After prostate cancer treatment ends, you will face a whole new world. Whether you are creating a survivorship plan or an end-of-life plan, nothing will be as it was before diagnosis. You will confront new fears, new opportunities to help others, and new social and physical situations.
Let us help you refocus your hope on where you are today and boldly face this new phase.
This is the secondpart of a three-part series which deals with common concerns on returning to work after a cancer diagnosis.
In Part 1 of this series, I shared some tips with you on how to prepare for your re-entry into the workplace. In this article we will look at practical ways to handle issues such as fatigue and concentration, managing your workload, and dealing with stress.
Let’s start with some tips on coping with fatigue as it’s probably the biggest challenge you will face, regardless of whether you are working during treatment or returning to work after treatment has ended.
Coping With Cancer-Related Fatigue
Cancer-related fatigue (CRF) is increasingly recognized as one of the most common and distressing side effects of cancer and its treatments. It has been estimated that from one quarter to nearly all cancer patients experience CRF during and after treatment. Although things generally improves after therapy is completed, some level of fatigue may persist for months, or even years, following treatment.
Commenting on the impact of CRF on her own work, Kate Bowles, who was diagnosed with breast cancer in 2013, says, “The main advice I give is that chemo related fatigue is real and lasting. And also that your priorities change, often in very empowering ways. I am very calm in my job, because I really know now that it’s just a job.”
A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of CRF. If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you. Before you can address CRF specifically, your doctor needs to determine if there are any underlying medical issues which may be contributing to your fatigue.
Making some adjustments to your everyday routines can also help you cope with CRF.
Here are three ways to do this.
1. Make deposits in your ‘energy bank’
You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.
2. Plan your day
Planning is key when you have fatigue. Write a ‘To Do’ list each evening so you can prioritize the things you need to do at work the next day.
3. Do some regular light exercise
Try to get out in the fresh air for a walk at lunchtime. Although exercising may be the last thing you feel like doing when you’re tired, if you don’t exercise, you’re more likely to experience fatigue.
I also recommend you download a free app called Untire, which contains a program that will help you track and improve your energy levels. The app uses theories and techniques from scientifically proven cognitive behavior therapy, mindfulness-based cognitive therapy, positive psychology and physical exercise interventions.
Managing your time at work is all about learning to work smarter, not harder. It’s not about packing more tasks into your day, but about streamlining how you go about your work and prioritizing key tasks.
Here are seven tips to develop better time management skills.
1. Track your time and eliminate the non-essential
First things first. If you’re going to manage your time better, you need to figure out where you spend your time. Use a tool like RescueTime to track your activities for a week. This will help you determine how much you can realistically accomplish in a day, identify the time of day when you are most productive, and uncover daily timesucks, such as reading emails (unsubscribe from those e-mail lists you no longer need). When we can clearly identify our daily time sinks and remove them, we become more focused and productive.
2. Do the most important thing first
Mark Twain once said, “If it’s your job to eat a frog, it’s best to do it first thing in the morning. And if it’s your job to eat two frogs, it’s best to eat the biggest one first.” The point that Twain was making is that you should take care of your biggest and most-challenging tasks first thing in the morning.
Each day, identify the one or two tasks that are the most important to complete, and get started right away on them. If a task is too big to complete in one day, divide it into smaller tasks to be spread out over several days. When you have accomplished a task, mark it off your list with a pen. This provides a psychological boost as it gives you visual confirmation that you are getting somewhere.
3. Batch related tasks
Batching refers to the process of using blocks of time for specific repetitive tasks. Different tasks demand different types of thinking, so save yourself time and mental energy by focusing on one type of task before moving on to the next.
4. Focus on one task at a time
Finding it hard to concentrate is a common effect of having had cancer. To combat this, focus on one task at a time instead of multi-tasking. Research tells us it can take up to 30 minutes to return your attention to whatever you were doing before an interruption. Put your phone away, close your email applications and any unnecessary browser windows on your computer. Concentrate fully on the one task you need to complete.
5. Take regular breaks
Allow yourself down-time between tasks. Break for lunch and take additional short breaks throughout the day. Maintain your energy reserves with nutritious snack breaks. Pack nuts, fresh fruits and veggies, hummus, or low-fat cheese to take to work with you.
6. Set time limits for tasks
Give yourself a certain time by which you will complete a task. For instance, reading and answering email can consume your whole day if you let it. Instead, set a limit of one hour a day for this task and stick to it. The easiest way to do this is to assign a solid block of time to this task rather than answering email on demand.
7. Let go of perfectionism
Stop trying to be perfect. When you’re a perfectionist, nothing will ever be good enough. That means you’ll stick with a task long past the deadline. You’ll say yes to too many things and take on too much in an effort to prove to yourself, and others, that nothing has changed since your cancer diagnosis.
Sometimes you need to realize that good enough is sufficient and when you reach that point, then simply stop. This is not an excuse to do a poor job, but it is intended to give you permission to do a good job and then leave it there. Don’t waste precious energy and time polishing and perfecting something past that point.
It’s normal to feel some stress on returning to work, so it makes sense to plan ahead for how to deal with stressful situations. Here are some tips to help you.
1. Identify your body’s stress response
How we experience stress is individual to each of us. Learning to tune into what happens in your body when you perceive a stressful situation is the first step in understanding your own individual stress response. Does your jaw clench? Is your breath shallow? Are your muscles tense? When you become more aware of your physical response to stress, it will help regulate the tension when it does occur.
2. Slow down and pay attention to your breathing
When stress hits, everything speeds up. Our thoughts race, our heart pounds and our breathing increases. This can make it difficult to think rationally. Consciously slow down your breathing. When we are stressed we tend to breathe more shallowly. When you feel stressed, practice taking some slow deep abdominal breaths. Deep abdominal breathing slows the heart down, lowers blood pressure and helps us feel calmer.
3. Come back to your senses
One of the best ways to stop getting lost in your thoughts is to come to your senses and ground yourself in the present moment. A simple exercise is to notice five things around you. Practice this periodically throughout the day, especially at those times you find yourself getting caught up in your thoughts and feelings.
Look around and notice five things that you can see;
Listen carefully and notice five things that you can hear;
Notice five things that you can feel in contact with your body (for example, your feet upon the floor, your back against the chair);
Finally, do all of the above simultaneously.
4. Take Some Exercise
Physical activity is one of the simplest and most effective ways to reduce stress and anxiety – providing a natural outlet for your body when you are exposed to too much adrenaline.
Research has shown that there are many benefits to exercise. Not only does it help reduce the symptoms of fatigue, exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.
Go for a walk, head to the gym or find a lunch-time yoga class. Throughout the day take short breaks to stretch or do simple exercises at your desk.
Handling your re-entry to the workplace after a cancer diagnosis is all about organizing your time better, prioritizing your workload, establishing boundaries and becoming more comfortable with saying no to unreasonable demands.
Above all, it’s about making your health your top priority. Get adequate sleep, eat healthily, take some exercise and incorporate stress-management techniques into your daily routines.
I know from personal experience it isn’t always quite as straightforward as I have laid things out here. There will be many ups and downs. Deborah Bowman, a Professor of Medical Ethics, who was diagnosed with cancer in 2017, urges self-kindness and patience. “Don’t be afraid to say if it becomes unexpectedly (or expectedly!) difficult,” she says, “be kind to yourself and allow others to be kind to you too. Accept it may be up and down rather than a straightforward trajectory. Celebrate your good moments and forgive yourself the harder moments.”
Next month in Part 3 of this Returning To Work series, we will take a look at the opportunities and challenges of finding a new job after cancer. Until then, if you have any tips to share with readers about how you coped on returning to work, please share them in the comments below.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
https://powerfulpatients.org/pen/wp-content/uploads/Returning-To-Work-After-Cancer-Treatment-1.png600600Marie Ennis-O'Connorhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2018-12-20 16:29:422022-09-09 11:51:25Returning To Work During or After Cancer Treatment: Part 2
Self-care is essential for all of us; it’s something that allows you to take a mental health break while also making sure your body is in good shape. After a period of stress or anxiety, you need a little time to heal and get yourself back to a good place. This is especially true for cancer survivors, who battle stress, physical pain, anxiety, depression, and worry every day. Cancer comes in many different forms and affects the body and mind in different ways, meaning no two people will handle it the same way. What works for you when it comes to coping may not work for someone else, and vice versa.
Fortunately, there are many different ways you can learn to cope with your feelings and take a time-out. From daily exercise to learning to listen to your body’s cues, self-care involves a variety of activities for you to choose from. You may choose to practice self-care alone or with a close friend; you can do it from the comfort of your own home or at the gym. Whatever makes you feel good in a healthy way is classified as self-care.
Keep reading for some great tips on how to practice self-care as a cancer survivor.
Take Your Medication as Directed
Most cancer survivors need medication to help with pain, nausea, and other symptoms that will make daily life a little easier. Some take several different medications every day, and it’s imperative to keep track of these and make sure you’re taking them correctly. You might use an app on your phone to help you remember what time you need to take specific pills, or invest in a sorter that will keep all your medicines measured out for each day.
If you feel that the dosage on a medication isn’t right, talk to your doctor immediately rather than attempting to change the dosage yourself or discontinuing use. Because many of these can be habit-forming, using them correctly is important not just in maintaining your health, but because opioids can be highly addictive and can cause many more issues than they treat if used incorrectly.
If you’re concerned about using prescription medication like opioids to treat your pain and nausea, it’s worth talking to your doctor about the option of CBD. It’s a natural, non-narcotic and non-hallucinogenic treatment that provides relief for many of cancer’s most troubling side effects, such as muscle pain, nausea and anxiety. As with any treatment, be sure to consult your physician before giving it a try.
Sometimes, medication or chemotherapy can interfere with appetite, making it extra important to make sure you’re eating well when you are hungry. Try to eat small snacks throughout the day made up of whole, unprocessed foods, and remember to stay hydrated. Talk to your doctor about the best foods for your body’s needs, and consider hitting up the farmers market for fresh produce as often as you can.
Make Your Needs a Priority
Many individuals who are faced with a battle against cancer find that they are so focused on the people around them that they rarely take time out for their own needs. You may be worried about how your family will pay for treatment or how your illness is affecting your children. While these are valid concerns, one of the best ways to help ease your mind is to take a little time for yourself. Go for a short hike, sit down with a good book, or lie in bed and listen to your favorite music. Learning how to slow down and reset your mind isn’t always easy, but it’s necessary.
Try Something New
As long as you have the energy for it, now is the perfect time to try something new. Finding something that is enjoyable and allows you to shake off worry or anxiety for a while is a great way to take care of yourself. Whether you want to learn a new language or travel to a place you’ve never been, don’t put it off. Just make sure your health won’t be affected negatively, and talk to your doctor before making any major plans.
Taking care of yourself can be a big job, so remember that there are only so many things you can do in a day. You might try yoga and meditation during this time to learn how to practice mindfulness and focus on the present; this can help you cope with stress in the moment so that you can turn your mind to more important things.
https://powerfulpatients.org/pen/wp-content/uploads/Self-care.png600600Dana Brownhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngDana Brown2018-11-27 17:59:492022-11-08 13:48:07Self-Care During Illness: Tips for Cancer Survivors
This month’s article is the first in a three-part series which deals with common concerns on returning to work after a cancer diagnosis and offers practical solutions for helping with your re-entry into the workplace.
A diagnosis of cancer is a profound disruption in our lives, leaving no area untouched. Cancer impacts our family life, our relationships, and our careers. If you have been absent from work, the decision to return often brings with it mixed emotions. While you may welcome a return to normality, a steady income, the company of work colleagues and a sense of identity, you may also be feeling apprehensive about how you will cope.
Particularly if you are used to identifying closely with your job, a prolonged absence from work can be difficult. Even if you continue working during treatment, you may also experience some difficulties. You may be wondering how you will cope with your workload. Will your co-workers treat you differently? How will your boss react to you? Will your promotional opportunities be affected?
Although the majority of those who return (or continue) to work after cancer adapt well, some will encounter difficulties. In Part 1 of this series, we will take a look at some practical ways to prepare for your re-integration back into the workplace.
When Do You Know It Is Time To Return To Work?
There is no one-size fits all answer to the question of when it’s time to return to work. It will depend on the type of treatment you received, your financial situation, your physical and emotional state and other personal factors.
Only you know whether it would be better for your psychological health to be at home, away from any professional stresses, or at work, where distractions may take your mind off other things. Chris Lewis, founder of Chris’s Cancer Community, believes that “work can be a fantastic therapy, when dealing with life’s challenges. We feel valued, and of course, can provide an income for our family.”
On the other hand, perhaps you see cancer as an opportunity to re-evaluate your career. You may find that your work priorities have changed, or you feel unable to keep up with the demands of your previous work pace. Perhaps you want a new job which will allow you more flexibility to pursue other goals or you may want to explore working in a field which is more personally fulfilling (we will look at this in more detail in Part 3).
Preparing the Ground
Doing some groundwork before you return to work should help make re-entry more manageable. Plan in advance how you will respond to questions from co-workers, deal with your boss’s expectations, and handle your workload. Here are some tips to help you.
1. Making adjustments and accommodations to your work environment
Your employer has a duty to make ‘reasonable adjustments’ to your workplace and working practices. What is considered a ‘reasonable adjustment’ depends on factors such as the cost and practicality of making the adjustment, which is why it’s important to discuss things as soon as possible with your employer. Some things to discuss include the possibility (at least temporarily) of a phased or gradual return to work, job-sharing, working from home or flexi –time.
A word of caution here. It is not unusual for part-time work to turn into a full time job. Set clear boundaries about what is achievable in the hours you have agreed to work. If you are thinking about working from home, be aware that this can be quite isolating. Will you miss the camaraderie of the office?
Breast cancer blogger @lifeafterlola suggests that “A phased return is good, combining time back at work with work from home or a day off on, say, a Wednesday to break up the fatigue. The hardest thing to cope with,” she says, is getting back up to pace with early mornings, late finishes and travel on top of work and social adjustment.” Julia, co-founder of breast cancer Twitter chat, #BCCWW offers a practical tip to reduce the stress of traveling to work. “If it’s possible travel outside rush hour,” she advises.
Next, think about your physical environment at work. Revisit you work-station. Does it need to be redesigned or fitted with equipment such as back support or other devices to make you more comfortable?
The size of your company may affect how much accommodation to your needs you can expect to get. Larger organizations are in a better position to offer you more flexibility and support, but most employers will be understanding if you communicate your needs clearly with them. It may be helpful to have a letter from your doctor to document any accommodations required.
2. Getting up to speed with changes at work
Depending on how long you have been absent, you may find things have moved on since you were away from work. If this is the case, take some time to get up to speed with new systems and developments. This may include attending formal training sessions in advance of getting back to work, or having a colleague take some time to get you caught up again. Julia explains how she struggled initially with her job which “involved reading lots of draft legislation, policy papers, etc.” and after speaking to her boss, did some refresher training to get up to speed again.
3. Updating your co-workers on your plans to return to work
Most of us have built up a carefully constructed professional persona and we work hard at protecting it by keeping a fairly strict line of demarcation between our personal and professional lives. It can be unsettling to find these lines have become blurred by your illness.
Not everyone knows the right thing to say or how best to offer support. Connecting with colleagues before you return to work can, in the words of Julia, “get a little of the first day nerves out of the way, especially if you are feeling anxious about their reactions to your changed appearance.”
In general people will take their cue from you, so take the lead with colleagues. Talk them on the phone, send an email or arrange to meet for coffee or lunch. Reassure them that you are doing ok and that you still want to be a valued member of the team. Decide in advance how much you are comfortable sharing. If you are a naturally open person, then you can talk frankly with your work colleagues, letting them know what they can do to help you ease back into work. If you are more private, just tell everyone that you appreciate their asking, you are doing ok now and you are looking forward to getting back to normal.
4. Communicating with your manager
Most managers and bosses will support your transition back to work, but they may be unsure of how best to handle this. As Kate Bowles points out in this post: “The particular challenge of having oncology patients (which is what we still are) as staff under your management, as colleagues and as workplace friends, leaves everyone falling back on adhoc interpersonal skills.”
It can be difficult for managers and colleagues to know how to strike the right balance between giving you extra support and allowing you to carry on as normal. As Julia points out “Your line manager isn’t a mind reader. Be honest about what you can/can’t do, offer solutions, about managing work and don’t just leave it to them. It should be a two way process.”
For your part, you may have concerns about being perceived as a productive member of the team. Open and honest communication is key here. Check in regularly with updates on how you are coping and to review your productivity. If there are things that you are not ready to undertake initially, then be honest, and ask for help if you need it. Set clear boundaries that will allow you to say no to certain types of requests, such as staying late for non-essential projects. “Learn to say I can’t ….YET,” advises Siobhan Freeney, founder of Being Dense, an organization which raises awareness of Breast Density and its associated links to breast cancer and screening.
A note on work discrimination. Legally, your cancer history can’t be used against you in the workplace. But it can be difficult to determine this, because discrimination can be subtle. Know your rights. Look into whether you are protected by the federal Americans with Disabilities Act or your state’s Fair Employment Law.
5. Book a counseling session
If you are worried about how you will cope on your return to work, consider booking some sessions with a counsellor or cognitive behavioral therapist to build up your confidence and coping skills. Some employers have an employee assistance program in place which allows you to speak in confidence to a trained professional about your concerns. Ask if this is available in your company.
Learning some stress management techniques in advance of your return will also help you cope better (we’ll look at this in more detail in Part 2).
6. Stock your freezer
When we’re tired, we tend to gravitate towards processed food which depletes our energy reserves further. Siobhan suggests you “stock up handy home cooked freezer meals in advance of returning to work to avoid being tempted to skip dinner when over-tired.”
The key to managing the stress of working after a cancer diagnosis is to prepare as much in advance of your return to the work place. Be prepared to be flexible in your planning approach. Cancer recovery is an ongoing process. There will be many ups and downs. You may have to deal with late side-effects of treatment or side-effects related to medication. Be ready to adjust your work practices if and when you need to.
Next month, I will share more tips and practical advice on handling your work load, managing your time and dealing with issues such as fatigue and concentration once you return to work. Until then, if you have any tips to share with readers about how you prepared your own return to work, please share them in the comments below.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
https://powerfulpatients.org/pen/wp-content/uploads/Returning-To-Work-After-Cancer-Treatment.png600600Marie Ennis-O'Connorhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2018-11-26 17:14:522022-02-22 16:14:08Returning To Work After Cancer Treatment. Part 1: Preparing the Ground
Navigating a prostate cancer diagnosis can be challenging. Where can you access information about your condition that’s easy to understand? What should you expect from your healthcare team? This program, produced in partnership with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, will feature Dr. Maha Hussain along with Nurse Practitioner Brenda Martone Oncology Social Worker Catherine Cassingham, and prostate cancer patient Gary. The experts will help viewers understand treatment options, emerging research and tools for symptom management. You’ll also hear advice for staying educated and informed about prostate cancer including tips for identifying resources and support for living well with prostate cancer.
Hello. I’m Andrew Schorr. Welcome to this patient empowerment network program. I’m joining you from Philadelphia, and this program, of course, is titled Tools for Living Well With Prostate Cancer. It’s produced by my organization, Patient Power in partnership with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago.
We want to thank our sponsors, Astellas, Clovis Oncology, and Pfizer for their support. Of course, they have no editorial control and what you’ll be hearing over the next 90 minutes, comes from our experts.
Now, of course, you need to think about what they say and see, does it apply to you, discuss it with your own doctor. That’s how you get the treatment that is right for you. Over the next 90 minutes, we’ll be discussing the latest in prostate cancer treatment and research, tools for managing symptoms, and advice for living well for patients and their loved ones, and of course, we wanna answer your questions, so be sure to send them to email@example.com, and later in the program, we’ll be taking your questions and we have a really – a wonderful panel and I want to introduce them now.
I want to begin with our patient, someone living with more advanced prostate cancer. That’s Gary Andrus, and Gary was diagnosed in 2006. He joins us from Bloomfield Hills, Michigan. Gary, welcome to the program.
Hello, how are you?
I’m okay. Gary, you’ve been through it, but it started in 2006. Just briefly, we want to help people understand a little bit about your journey. What led to the diagnosis, was it just a routine physical?
It started out as a routine physical in ’05, the latter part of ’05, and then a couple different PSA tests brought it about to a need for greater look, and then it was a biopsy in ’06 and then I was diagnosed in, really, February of ’06.
Now, I understand, when you had that biopsy, the cores kept coming back positive.
All 12 cores were positive.
Right. That must have been – I wanna – was gonna say a mind-blower, very upsetting, for sure.
It begins to change your life.
Yeah, I’m sure. We’re gonna talk about that and we have an oncology social worker who will be joining us in a couple of minutes, and we’re gonna talk about that part of it as well as, what are the medicines, what are the treatments, what are the side effects, how do you go on? Now, you’ve gone through a lot of treatments. It was recommended not to have surgery and go on with radiation, correct?
Yes, it was. There was a concern that, due to my Gleason Scores, and possibility to have the cancer leaving the capsule, some other areas that showed up, that the best thing to do was not to go through a series of surgeries, but then to go right to a radiation regiment.
Now, of course, for some men who are newly diagnosed, they might even be in, we’re gonna learn more about this along the way, an active surveillance situation where they’re monitored, and then some men have surgery, some men have radiation, some men go on other treatments. You’ve gone on to a number of treatments, both chemotherapy and other more targeted therapies, and they’ve changed over time, right?
Yes, I guess, most notable, I’ve been on Lupron and I’ve been on intermittent treatment since ‘06, which then led to more of a regular treatment right now on Lupron. In 2014, there were two locations in my spine that were used with stereotactic radiation and then that worked very well for me, and then, lately, my bone scan showed numerous other current locations on my skeleton at this point.
Right, and you’ve had some of the oral therapies you can take now, and you’ve cycled through a couple and they’ve been switched at different times based on your situation.
Currently, I am on an oral, which is called Zytiga. Previously, I was on Xtandi. I think the Zytiga may be working better for me, but it’s very early in the process. I’m only on day – oh, this is Wednesday. I’m on day seven.
Wow, so very new. One last question, I’m gonna come back to you more during the program and our audience may have questions for you, too, Gary, living with it, what keeps you going? I mean, the disease has progressed over time, what propels you?
Life itself. I mean, there’s no reason to ever give up or whatever. I have too much I enjoy doing and I usually try to take the upbeat attitude, and I’m driven to enjoy everything that there is out there and there’s so much to enjoy.
Well, fortunately and as we’re gonna hear, for men, even with more advanced prostate cancer, there is a lot of living to do and there are more medicines than ever before, and we’re gonna talk about the research as well. Let’s meet your doctor, Gary, who you first met in Michigan and now she’s in Chicago, you followed her there, and that’s Dr. Maha Hussain. Dr. Hussain is a world-renowned medical oncologist specializing in prostate cancer, and she is now the deputy director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern in Chicago. Dr. Hussain, welcome to the program.
Thank you, Andrew. It’s a pleasure.
You’ve known Gary for a while, and I’m sure, even though his condition has progressed, as a specialist, I’m sure you’re gratified that you have more to offer him as the need comes up.
Absolutely. I cannot believe that it’s been 12 years-plus since Gary and I met. We both were a younger crowd, and we’ve been together. He’s been a phenomenal patient, partner, in all kinds of ways. I think one of the greatest things about him is he is very positive-thinking, and always, the glass is more than half full.
Amen, yeah. It’s the way – for those of us – and I’m a cancer survivor, too, that’s how we – there’s uncertainty and we know we have today, and fortunately, medical science has been moving forward and we’re gonna talk about that. He mentioned Gleason Score, and also, he had a PSA test, so for men who are not so familiar with that, first of all, Dr. Hussain, when we say PSA, think prostate-specific antigen –
How is that important in triggering, oh, this person may have prostate cancer?
Prostate-specific antigen is a blood test, and it’s a product of prostate cells. A normal prostate will actually have, what we call PSA, prostate-specific antigen, and because the cancer cells are a product of the normal prostate cells, they will, in the vast majority of times, retain the ability to make the PSA.
Now, as you know, prostates can change in size over time, and when we do blood tests for the PSA, there are ranges from what we would consider normal range, and this normal range is – also has to be adapted by age, so someone who is, let’s say, 45 years old, normal range PSA for that person ought to be different than someone who was, say, 75 years old and that has to do with the size of the prostate and other factors.
Because the cancer can make the PSA, an elevation in the PSA could be something that could be cancer related, but I want to point out to the men who are joining us on this session that there are other things that can make the PSA go up, including infections in the prostate, irritation, things of that sort, enlargement of the prostate, so not every elevated PSA is necessarily cancer related.
Okay, he mentioned Gleason Score. What is a Gleason Score and why is that significant?
The Gleason Score is named after the pathologist who came up with the grading system, Dr. Gleason, and this was intended to basically better characterize, how aggressive is the cancer? As you know, if you think of the prostate as sort of like a peach, it has both sides, and at the microscopic level, there is what we call glandular tissue. When cancer happens, there are different shades of grey in terms of, how aggressive does it look under the microscope, and the quantity of the worst cancer versus not-so-aggressive cancer does matter in terms of the prognosis and the forecast in terms of risk of relapse and so on.
Dr. Gleason came up with a system whereby, under the microscope, the pathologist will look at the cancer that is present and characterize it by how aggressive it looks. The more it looks like the normal tissue, that’s the less aggressive, and the less it looks like the normal tissue, that makes it more aggressive, and because the prostate is a large organ, there could be the possibility of multiple areas that might have the cancer in it.
Essentially, what they do is try to come up with a lump sum sort of read that gives you the most predominant pattern that’s given a score, and then the lest predominant pattern that’s also – I’m sorry, the next most predominant pattern is also given a score, and those two numbers are added up, and that’s how we come up with the Gleason Score.
Okay, and is that the –
Historically, that goes – I’m sorry – from two to 10, and that means a person’s Gleason Score, again, historically, was two or it could be three, or it could be anywhere between that and 10. Then, recently, the pathologists have changed the way the grading system is, so now it really goes from one to five and it’s not the Gleason Score itself.
On the old system, Gary, what was your Gleason Score? What did you find out at the onset?
Nine, I think.
Nine, okay, and the old system?
Gary: I don’t know, it was an awfully long time ago.
Andrew: Right, and Dr. Hussain –
I think most of them were Nines.
Dr. Hussain, is the Gleason Score – that is a result of doing those biopsies, did I get that right?
Yeah, the Gleason Score is not the result of it, but it’s basically the product of a pathologist looking at the tissue that was removed by the biopsy, and obviously, what they do is, when the surgeons, urologists go in, they try to sample multiple areas in both lobes of the prostate.
Okay, so Gary was determined not to have surgery because of how much was found. Tell us about that decision and let’s start with, what I think you call active surveillance. What are the qualities, the analysis going where you say to a gentleman, we can do active surveillance, and what does that entail, and then whether or not surgery would be indicated, and-or radiation, and then, do we need to do systemic therapy?
Sure. Let’s begin with a hypothetical case. A person comes in for one reason or another, they end up either having a symptom or even without a symptom they go for their routine follow up with their primary care doctor and the PSA is done. That PSA is done and let’s say it comes back as five. That is monitored and at a next time it’s evaluated, the number is the same or slightly higher. At that point, the patient is referred to a urologist.
The urologist will start the evaluation and part of the evaluation right now, we have, also, integration of MRI to evaluate the prostate that will give better views of where things need to be done and the size of the prostate, and the potential risk in there based on the morphology, and so on. At the end of the day, the definite confirmation of presence of cancer is gonna be driven by biopsies. Let’s say the biopsy is done and then this tissue is evaluated, and the pathologist comes back with a Gleason 6, let’s say. A Gleason 6 prostate cancer is deemed to be, generally, a non-aggressive cancer.
Assuming the patient on evaluation, again, by the urologist and the MRI, there is not a concerning lesion in the prostate, meaning it’s too large or some tumor, or something else that is of concern more so then what the Gleason is showing, and assuming by all other criteria the patient is in good health, compliant, is gonna come back, then usually a process is put in place. Generally, this happens with the urologist where there is routine monitoring of the PSA of the prostate and periodic biopsies are done, again, depending on either for a cause, and it’s not for a cause, as part of routine evaluation.
This is something that was implemented primarily to minimize the risk of unnecessary treatment. Doing radiation treatment or so on can leave the patient with residual side effects from those treatments, when in fact, in the first place, that cancer may not be – ever been harmful and they could have lived and died decades later from something else.
That’s generally the routine, and I generally advise my patients who come in, let’s say, for a second opinion to actually consult with their urologists, have a routine follow up, and never assume that the history is gonna predict the future, which means there are times when patients in follow up, either their PSA goes back up or they develop a mass in their prostate that’s more palpable, or the – on a follow up biopsy, the score goes up, at which point the patient needs treatment. Really compliance becomes a critical part of the process.
Okay, so it’s a team, and I want to introduce someone else who’s part of your team. I think this is a good place to do it. That is a nurse practitioner who works with you, with prostate cancer patients, and that’s Brenda Martone. Brenda is a very regular part of your team. Hi, Brenda, thank you for joining us.
Hi, Andrew. Thank you very much for having me.
Brenda, when somebody is in active surveillance, they’ve got to be communicating with their doctor, right, and then there’s a certain routine that Dr. Hussain just talked about, maybe some repeat biopsies with some frequency, monitoring the PSA. When you talk to patients, you have to say, we’re in partnership, right?
Absolutely. We can’t do this by ourselves and we need to make sure the patient understands what their responsibilities are, and then we need to make sure that we follow up with them if they do get a little bit lost, so we can continue the process and the act of surveillance.
Okay, and if we have partners of our patients listening, you’re part of the team, too. I know my wife is one who has to remind me sometimes, whether it’s to take my medicine that I take for the cancers I have or scheduled a visit or call and follow up. It’s a family affair or it could be your daughter, or even grandchild sometimes, depending upon your age. Dr. Hussain, let’s go back and take it further now. We talked about active surveillance, but what are the indications then for surgery?
Well, I’m gonna say indications for local therapy –that could be surgery or radiation, and as I mentioned, if in fact, upon re-biopsy, there is an upgrade in the pathology, so the Gleason Score goes up, let’s say, to start with, someone’s Gleason Score was six, and now it has gone up to, let’s say, eight, then that is not something that we want to sit on. That would be require a treatment. A change in the characteristics of the way the prostate is such that even though things may not be changing, but there appears to be now growth of the tumor and the prostate itself bigger, different things will trigger an evaluation.
The other part, there are times where the patient himself feels uncomfortable continuing to do this and would rather have their prostate out, and certainly, it’s a shared decision, which means the physician’s job is to explain the pros and cons, and at some point, the patient will have to decide, does he want to continue with this active surveillance because it is a commitment. This is not something you do for two years and say then, okay, I’m done, nothing else is necessary.
When it is deemed necessary to proceed with local therapy, I should highlight, we look at the patient fresh. For example, is this repeat biopsy, is such that is requiring that the patient undergo staging, which means cat scans repeated, bone scan done to make sure there is no visible cancer spread because that obviously will impact on whether it’s appropriate to proceed with local treatment versus not.
Generally speaking, the medical oncologists are not directly involved, although, I have to say, Brenda and I have our share of patients who come in for a tie breaker, so to speak. They might have consulted with a radiation oncologist and with a surgeon and the question comes back, well, what do you think, Dr. Hussain or which is better? I think this is where clear information and education of the patient with regard to the pros and cons of both approaches – the good news, Andrew, is that prostate cancer is highly curable, and that’s the great part. The other part, even if it’s not curable with local therapy, it is highly compatible with long living.
The intent is to do the best possible upfront and again, we focus a lot on shared decisions, so surgery or radiation is done. Now, depending on the aggressiveness of the cancer, the level of the PSA, the Gleason Score and so on, if a patient chose radiation therapy, they might have earned, also, a finite duration of hormonal therapy with is. That’s part of the tradeoffs to discuss with their physicians.
We’re gonna talk about that in a second. Radiation, is that typically a – years ago, they developed the seeds they could put in, and there are other ways of delivering radiation too, right?
The seeds is one tool. Generally, the more – tool is what we call the external beam radiation, and these are given generally daily, five days a week for a period of time. Recently, actually, ASCO and I believe ASTRO modified the guidelines and this hopefully will be reflected in patient material to look into in terms of shortening the duration of the radiation so that patients don’t have to go for two months worth of treatment or something of that sort. That would be the case.
In terms of the seeds, there’s two types of seeds, there are the permanent seed implants, which are general put for the lower grade, like the Gleason 6 cancer, but there are the high seed implants that generally are placed, then they’re removed, and these are intended to maximize the radiation together with the external beam radiation.
Okay, and Gary, am I right, you did have radiation to the prostate, is that correct?
Okay, how long did you have that for?
Okay, so we’re talking about maybe more compressed now, Dr. Hussain?
Okay, new guidelines. All right, Brenda –
I’m sorry, there are tradeoffs, and I think that’s where it critical for the patient to talk with their radiation doctor about the side effects.
Okay. Brenda, there they are. There’s maybe a husband and wife sitting across from you, and they heard this, they’ve come to your clinic, as well, maybe they’ve also been a urologist, and they’re trying to sort this out. How do you counsel people? Then, I’m gonna talk to our final guest Catherine in a second, who is a social worker, but for you, as a nurse practitioner, people trying to sort out the pros and cons. Oops, you’re muted. I’m sorry.
Okay, there we go. Can you hear me now?
Oftentimes, it’s joint decision-making with the oncologist and presenting the data to the patient and whomever they’re with, and then focusing on outcomes as well as the risk benefit ratio and reassuring them that symptoms and side effects can be managed, and we go through what those symptoms and side effects would be, as well as potential management, and just let them know that they’re not going through the treatment and the process by themselves. They have a team that’s supporting them.
Okay, well, part of the team and joining us now is Catherine Cassingham who is with us, joining us also from Northwestern. She’s an oncology social worker, so there is a team approach and it makes a difference. Catherine, Gary gets hit with a ton of bricks, that he’s diagnosed with prostate cancer, cancer, and it’s – the biopsies all come back positive, and he’s – and he said it was life changing and you deal with that in patients you meet at the clinic. Let’s talk about coping with that, first, emotionally for the family member as well as the patient, and then, also, this decision-making where, do you go left, do you go right, it’s hard.
It is, definitely. First of all, thank you very much for having me and I do – whether it’s prostate cancer or any type of cancer, when you first get that diagnosis, it can be incredibly stressful. Everybody deals with that and copes with a diagnosis differently. I think it can be really important that, whatever you are experiencing, to know that that’s normal, and to then seek out supports based on kind of what you’re going through.
There are times where I will see somebody when they are first diagnosed and they’re pretty much in a state of shock, and so we’ll just kind of go through what they’re experiencing and what their shock looks like. Then, typically, as people get into treatment, they kind of feel like, okay, now I’ve got a plan. Sometimes they tend to be doing better when they feel like, okay, there’s something that I can be doing.
Then, I will typically end up seeing people a little bit farther down the road when they’ve been going through treatment for a while, and still going through treatment is a stressful process. You typically have more doctor’s appointments. There’s ongoing stress. I like to talk about – it’s kind of like you start off with a glass full of water and that’s your ability to cope, and with every stressful event that happens, that keeps going down. It also gets to a point then where it’s really important to start filling that glass back up, and there’s many different forms of support that can help with that.
Yeah, you can get to a point where you feel like you’re running on empty. I know I was diagnosed 22 years ago with leukemia and my wife and I were in tears, I felt like I was on the floor, and little by little, you pick yourself up. Gary, how did you do that? How did you get past the shock and move on?
You know what, I really can’t tell you how I did it. I just did it. It was more about – I did make a series of life-changing moves, diet, I was in a position I didn’t have to really work anymore, so I quit working, I focused on my own health and everything outside of that, but then I made it fun. I mean, very honestly, Dr. Hussain used to say to me – I drove a 1967 Camaro convertible to nearly every one of my radiation treatments, again, right after the July 4th holiday in ’06, and I had the top down and the music on and would go up and have my treatment, and then jump back in my car, drove back down.
I refused to wear hospital gowns. When you go into this room, you’re supposed to go in and change and put on your hospital gown one front, one in the back, and go in, and you sit down in a room, and patients – everyone’s kind of hanging out there and then your number is called, or you go in and get your treatment. The first thing you have to do is take your robes off, so I decided that I wasn’t doing that anymore, and about my third treatment, I walked in in a pair of boxers, really fancy boxers, and a t-shirt and all the guys looked at me, and they’re like, are you in the wrong place? I was like, no, but I’m not sick either, and hospital gowns mean your sick. I just have cancer. I’m just here to get this done.
The next thing I knew, we had a room full of guys sitting there in boxers, that’s what happened, and then we all exchanged email addresses and we stayed in contact for quite a while, about two years. A lot of us stayed in contact with each other, but it was – you go in and you just do it, and yeah, there are side effects and there are things that happen. That’s part of the journey. That’s okay.
We’re gonna talk more about that, but I think what you’re saying is you found some brotherhood, as well, and I would say, if your partner is a female, there’s a sisterhood among partners of men who are dealing with prostate cancer, and you can find support groups. One of our partners in this is Us Too International, they have support groups all over the country, you have our friends at Malecare, there are other prostate cancer groups, and so you can reach out to them. You are not alone. Somebody has walked in these shoes ahead of you, like Gary, and men have had those range of treatments that Dr. Hussain described.
Just back to you for a second, Brenda. We talked about the decision-making that Dr. Hussain was talking about, whether it’s with your clinic or with the urology clinic, if it’s related to surgery, people are afraid of being wrong. Oh, my god, did I make the wrong decision? And you’re worried about that. Are there wrong decision or it’s just based on the best evidence and what the patient feels is right?
It’s definitely based on the best evidence, and there really isn’t a wrong answer, especially when Dr. Hussain and I are counseling patients or talking about treatment options. We definitely present the options that are appropriate, and we often tell our patients that we’re giving you options because they’re all appropriate for you and equivocal, and we just have to match the right option for you and what you feel the most comfortable and confident doing.
Okay, and that’s what we’re gonna do. That’s the last thing I wanted to ask you about, is, Catherine, again, people fear being wrong, or have they made their situation worse, have they made a misstep, and what do you tell people there?
Right, well, typically, we talk about, do you trust your doctor, and usually the answer is, yes, and so, do you trust your doctor that they’re giving you all of the information, and once you have all of that information, we just kind of work through what seems like it’s going to fit best with your life and still kind of keeping apart of you.
I love what Gary said about wearing a t-shirt and boxers, that that’s very much your personality, and to find a treatment option that will fit best with the decisions and how you live your life normally, then, going from there as far as once they’ve started treatment, are working through that and then are concerned it’s not working as well as they wanted it to, that kind of thing, that then we start talking about managing that fear and insecurities about decisions, that kind of thing, because nobody has a crystal ball, so we can’t figure out what’s gong to be the best option. Oftentimes, it’s just coming and finding acceptance with the decisions that we have made.
Right, and I think what you underscored is, having the healthcare team that you believe in, and you have the confidence. Gary’s had tremendous confidence in Dr. Hussain and her guidance over many years, and while it’s gone through a range of treatments, he’s had confidence that they’re doing the right thing. We talked about some of the approaches, surgery, and radiation, and I just wanna check with Brenda about side effects, okay? There’s no free lunch, if you will. Surgery is a significant decision and can have issues that come with it, as can radiation, so could you just talk about that for a minute?
Yes, of course. Surgery, men can – after surgery, can have issues with incontinence, which is leakage of the urine. After surgery, there are exercises and things like that that can be helpful to recover some of the muscle strength, but you may not be back to baseline, and so, managing that, men may need to wear a pad.
There are other side effects, of course, in terms of sexual function, depending on – the surgeons try their best to do what they call nerve-sparing surgery, to allow, obviously, erections and that, but not all the time is that maintained or preserved after surgery. Men need to be aware that they could have some sexual dysfunction following surgery, and again, there are sexual health clinics and options there to help manage that side effect.
Okay, and radiation, what I hear from people, really, the radiation, is they just get tired.
They do, they do get extremely tired, and it’s a progressive thing, the longer that they’re on treatment, and it’s sort of a funny thing, you can’t see, smell, or feel radiation, but you become so fatigued. There are also the side effects of, depending on where the radiation beam is aimed, sometimes men can have irritation to the rectum, so there can be problems with diarrhea, and then, depending on how they’re able to keep up with fluids and all that kind of stuff, sometimes men can suffer from a little dehydration. Nausea isn’t so much of a big deal, but again, the fatigue can be very, very challenging.
Okay, is there anything you can do to help?
Oh, yes, absolutely. Oftentimes, we focus on hydration, we focus on encouraging men, even when they’re feeling so tired, to get up off that couch. It doesn’t have to be a jog, but just walk around the block, walk around their house, stay active. Exercise is s really good – or just physical activity is a really good problem solving or a really good intervention to help minimize some of that fatigue, and then, of course, looking for other things like making sure they’re not becoming anemic and things like that, we could support them, making sure their diet, even though it’s very restricted on radiation, has foods that are high in protein and iron, and things like that.
That’s a good point. Gary, I understand in reading up about you that you changed your diet, too, right? Tell us about that.
It was a personal decision to stop eating meat, chicken. I went on a very – for a while, it was even macrobiotic, very – just all greens, but that was just the way I chose to do it for my own mental thought, if I felt as though I want to get rid of that, but I haven’t had any meat since ‘06. I stopped right away. Still, I don’t eat meat, but everybody has to find their own sense of what is best for them.
Right, Catherine, I think what all of us, any of us diagnosed with cancer want to do is, how can we try to take back control rather than feeling like a victim. If it’s diet, if it’s driving the car with the music up, if it’s wearing t-shirts and boxers instead of the gown, that’s all to the good, isn’t it?
Oh, of course. No, that’s what we really encourage. Of course, I’m a social worker, so I usually give the spiel about therapy and support groups and all those things, and those are really wonderful, but on your day-to-day, if you can find things that really help you still feel like you during this process, that’s really important, and so, often, that’s having a conversation with a patient because I can’t just give them a list of, oh, here, do these 10 things, and then you will still feel like you. Often, it is just looking and seeing if there were other rituals or traditions that you did naturally before that you can still keep doing now.
There may be new ones. Gary, if I’m correct, you actually became sort of an evangelist for men knowing about prostate cancer within your community and talking to individual patients, right?
Well, most men won’t talk about prostate cancer. Women will talk about breast cancer openly, and they’ll gain the support of other women, but men get very standoffish about talking about their own prostate cancer. I’ve tried a couple ways of letting guys get together, I’ve had some docs even at Oakland Hills come in and speak to men, hosted different things. Dr. Hussain and myself and a few others, we tried the Blue Boxer thing, didn’t get enough groundwork to kind of launch it, but it’s till out there. You can still look up the Blue Boxer Foundation.
I’ve tried to do it, and I still find, guys, they don’t want to talk about it. Occasionally, at Oakland Hills, now, somebody will – when they get that first diagnosis, somebody will say, go call Gary and talk to him, he’s been through a lot of it, but one thing I do know is everybody’s on their own journey. They have their own lifestyle. They have different feelings. They can’t just walk away from a job and focus on themselves and their health and go to yoga three times a week, and just get a mindset that I’m gonna win. Their life can’t stop like that. Everybody’s got to do their own thing to find their comfort.
Right, on the medical side, too, how do they cope? I wanna just ask the question of Dr. Hussain. Dr. Hussain, we’re in the age of personalized medicine, and in a second, were gonna start to run down some of the treatments you have, both the approved ones and also the ones in research, but we’re in this age of personalized medicine, so that’s part of the decision-making that you do with the patient, with the family, right, is what’s right for that individual, correct?
Absolutely. I think this is one of the longest conversations, because you’re dealing with the stress of knowing you have a cancer. That word is scary to everybody. There is not a – I can’t even say anything that says, oh, it’s okay because it is a scary word to patients and their families. There is the whole mental stress part of it, then there is the stress of what it means down the road, and then there is the stress of needing to make the decision about the treatment. There is also the stress to patients about what treatment to pick and what are the potential side effects, because remember, most people are asymptomatic. They’re just going about their life, and suddenly, they get diagnosed with the cancer.
We try to very much individualize when – and we talk about personalized, it’s really personalized at the macro and micro level, which means at the patient-doctor interaction and their choices with regard to what they prefer, all the way down to, obviously, downstream in terms of the biology of the cancer itself. The good news is this, is that, in most places, and if they’re not – if this info is not available, there is the potential for patients to have access to material, but I do think that, in most places, there are support systems available for patients to help them and guide them in terms of a decision making.
Okay, let’s talk about hormones for a minute. Is prostate cancer, Dr. Hussain, fueled by testosterone? Is that like throwing gasoline on the fire? Is that what it is? Then, where does controlling hormone with medicine come in?
As it turns out, testosterone is the feeder for the cancer, and essentially, potentially even the instigator, so to speak, of causing, potentially, the cancer, and therefore, starving the cells from the male hormone is essentially the backbone of treatment when we get to the level where systemic therapy is necessary. In the old days, this was accomplished by removing the testis, and subsequent to that, medical therapy hit the clinic and there are many choices right now that we have, primarily injections to try to suppress the testosterone production and shut down the testis.
By starving the cancer, that causes the cancer to first arrest and it doesn’t grow, and then, ultimately, the cancer cells will die. Then, depending on the setting and how much cancer there is, and how resistant or how smart are the cancer cells, the downstream outcomes can vary by individuals. There are people who continue in a good response for a long period of time, and there are patients who, unfortunately, literally, I say, respond for five minutes and their cancer ends up progressing, but the majority is not like that.
The majority is, you can buy a lot of time and hormone treatment has gravitated now to the earlier stages of the disease because that is where, when you have lesser cancer, you have a better chance of eradicating it from the system with the hope that you can cure the patient, and so, consequently, that is part of the operation when we have patients choosing radiation treatment, but let’s say they have borderline bulky disease in their prostate, a finite duration of hormonal treatment is added to the radiation and that ends up prolonging life.
Gary, you had hormonal therapy for quite a while. It worked for a quite a while for you, didn’t it?
Yes, I still am on hormonal therapy.
Okay, so that’s part of it. Let’s talk, Brenda, about side effects. You’re shutting down, as best you can, the testosterone, so it’s not a free lunch, there are some side effects with that, right?
Yes, there are. The most frequent side effects with androgen deprivation therapy is hot flashes, men can get hot flashes. They can be infrequent, or they can hop into hourly, and they can be distressing. They can also gain weight. We are altering their metabolism by taking away their testosterone. Men often gain weight in the same – kind of the midsection where women gain weight during menopause, there can be muscle mass wasting, so their muscle mass can go down, and then probably the most – or more distressing would be the lack of libido because it’s testosterone that kind of drives that sex drive, as well as having erectile dysfunction or not being able to get an erection.
Okay, so we see on TV, there are pills for things like that. I think, do they work in men who are going through prostate cancer treatment?
There are times where men can get erections with medications such as Viagra, I’m not advertising, but those sorts of medications that help with that. What we don’t want men to do is pay attention to those commercials that talk about low T and what you should do for that because that’s exactly what we want to avoid, is supplementing the prostate cancer with additional testosterone.
Yeah, gas on the fires.
Don’t want to do that. Gary, what side effects have you had with hormonal therapy and how have you coped?
All the ones that Brenda has mentioned. The hot flashes, I think the doctor was saying, we’ll probably use the right word, but I guess I would say I’ve been chemically castrated for years, the hot flashes, but you cope. I always looked at the hot flashes as, it’s no different than what hundreds of thousands – every woman has to go through at some point in time, and actually, sometimes in the winter, they kind of warm me up.
Living in Michigan, yeah.
Yeah, living in Michigan, but you just deal with it. I still get hot flashes. I mean, the drugs I’m on now, everything – you still get hot flashes, they’ve never stopped. At different times, they’re pretty intense, but that’s better than any other times.
As far as the sexual nature, Dr. Hussain and I talked years ago and I’m like, you’ve got to be kidding me. I mean, I don’t really care. At this point in my life, whether I was 48, 50, and now 61, it’s about living. I don’t hold that side of my male character as being what makes me male, and I’ve tried to explain this to other men, it’s – that is not what makes you a man, and I’m a pretty strong alpha male, and I’m on the board of directors at Oakland Hills and I’m – and guys see me as extremely strong alpha male and they follow me, and it has nothing to do with whether or not I have a strong libido or not. It doesn’t come into play. It’s all in your head.
Well said Gary. Well, let’s go on. If I get this right, Dr. Hussain, these are what you call androgen deprivation therapy, did I get it right? Is that the right term?
Correct. The intent is to deprive the cancer cells from the androgens, which are the male hormones, essentially, testosterone and testosterone-like products, to starve the cancer.
Okay, now, I have heard the term, castration-resistant, so what does that mean when a doctor says to a patient, well – does that mean that hormonal therapy or anti-deprivation therapy is no longer working?
Correct, and maybe, if we have a minute, let me maybe walk the audience through, why did we come up with this terminology?
Historically, what we used to call the situation, hormone refractory, and then, over the years, we’ve discovered, just because you’re shutting down the testis, it does not mean that if you are gonna introduce a new hormonal treatment, that the cancer isn’t going to respond. A perfect example is what Gary is on, so the medication that he is getting, the Zytiga, is a hormonal therapy.
In some way, it’s intending to shut down sources of androgens, and so several of us in the United States, we actually developed working group type criteria for calling the disease itself as to what it is and essentially, what a castration resistance implies is that a person is on hormonal treatment, their testis is meant to be shut down completely by the Lupron or the Zoladex, whatever hormonal agent they have, or they might have chosen to actually go through surgical removal of their testis.
Now, despite the fact that they don’t have a lot of male hormone in their body, their cancer is actually growing, and that is what we refer to as castration-resistant disease.
Okay, so you may be on this, treatments like this for continuing to try to keep that shut down as best you can. Let’s go on and understand, though, chemotherapy. Chemotherapy has been used in prostate cancer and across all cancers for a long time. Does it still have a place in prostate cancer?
Absolutely. I would point out that, if we’re gonna be focusing more so right now on the more advanced stage of the disease, I would point out that the first drug that has ever demonstrated in the history of the disease, of castration-resistant disease, in overall survival improvement in prostate cancer was actually chemotherapy, a drug that’s called docetaxel approved by the FDA.
Prior to that, we had different agents that were potentially palliative, but not necessarily life prolonging, and then subsequent to docetaxel, another drug also was evaluated in patients who’ve been exposed to docetaxel and also showed an overall survival advantage, which is also a drug approved by the FDA and called Cabazitaxel. The good news is we don’t have to just have chemotherapy. There are other agents that have had a track record ever since 2004 by demonstrating an effect against the cancer, which we measure by, generally, criteria of prolonging life and overall survival improvement.
Okay, and someone could be on chemo with one of these other drugs, as well?
Well, it’s too early to say at this moment. Right now, the sequence of events is generally if a person has developed castration-resistant disease in general, most of the time outside of clinical trial, patients preference, and a lot of times physician preference, is to offer oral therapy, and the oral therapy would be hormonal agents that are oral agents like the Zytiga, which is abiraterone with prednisone or enzalutamide, which is – these are both drugs, again, FDA-approved for patients with castration-resistant disease. Then there are clinical trials looking at maximizing the anti-cancer effect by combining these types of hormonal agents with chemotherapy.
What we know is this, is moving chemotherapy earlier in the cycle of disease, before it becomes castration-resistant, and-or agents like the Zytiga into the earlier phases where the cancer, let’s say, just became metastatic, but it’s not yet resistant to the hormone treatment, that gives a much better return on investment, so to speak, in terms of prolonging life. There’s been a stage – a shift, a migration to earlier phases of the disease where we’re implementing these types of treatments.
I want to go through some of the other medicines and approaches that are used, and also the research, which I think is very encouraging. Dr. Hussain, a few years ago, time passes, there was a vaccine developed for prostate cancer. When we think of flu shots and other vaccines our kids get, things like that, this is different, and where does it come in?
Well, the vaccine is an agent called sipuleucel-T, or Provenge, and this was actually the first vaccine approved in prostate cancer, There aren’t many vaccines, by the way, historically, for treatments of cancers in general, and where this comes in, essentially, the intent was to, in fact, personalize the care of the patient by arming the body with this particular vaccine to fight the cancer itself.
It’s an approach available commercially at this moment, and certainly, patients should consult with their physicians regarding the appropriateness of it, and partly because some aspects of this particular vaccine as such where you the acuteness of the situation may determine which agents you want to pick up, whether it’s going to be a vaccine versus a chemo, versus a hormonal agent, so this is where I would say personalizing the care to that individual becomes very critical.
Certainly, if it’s appropriate, that’s available, FDA-approved, and patients could explore it. There’s a lot of work looking at, essentially – I don’t know if this is premature to address, but the adoptive cell therapy and other things to try to arm the body with the tools necessary to fight cancer.
Right. We’re gonna talk more about that, but basically, can an approach be developed to boost your immune system or make a personalized drug to fight your cancer? A lot of work is going on, on that. We talked about radiation earlier, Dr. Hussain, and I know at least there’s one radiopharmaceutical. What does that mean and how does that come into prostate cancer treatment?
Radiation, as you know, is a technology that is intended to kill the cancer cells in a directed manner. In patients who have metastatic disease, you obviously cannot put the body through a radiation machine and try to hit it in multiple areas. There are times where we can do that, and certainly, we have done that with Gary when you have limited number of spots, certainly, that the trend nowadays is – what we do is to target as much as possible those areas to try to maximize the cell kill, the kill of the cancer, on top of getting the hormone treatment to starve it.
One of the features of prostate cancer and what I call the hallmark of metastatic prostate cancer is actually spread to bone, and it’s still puzzling, why does it go to bone, say, compared to any other cancer as the number one site in the vast majority of times? Trying to target the bone while you’re sparing other body parts from treatment is certainly a legitimate treatment approach with the intent of maximizing the potential benefit and minimizing the potential side-effects. Radium–223 is such a radiopharmaceutical, I would point out, it’s not the first radiopharmaceutical that was utilized in prostate cancer.
Years ago, there were other radiopharmaceuticals that were approved by the FDA then, I would say, and this is more like the 90s. Those were not life-prolonging. They were more of a palliative-type treatment. Radium, on the other hand, was a treatment that demonstrated the potential for prolonging life. Same thing, I think, for patients. If, in fact, they are interested in it, they should discuss with their doctors whether it’s appropriate for them, and the reason that is the case, it’s not going to work for cancers that are outside the bone. If a person has bone and lymph nodes or spots in the lung, or spots in the liver, or somewhere else, then certainly, the Radium would not be the appropriate treatment for them.
Brenda, again, let’s talk about any issues related to bone. If Gary or another gentleman says, my back hurts or I’ve had this pain in my hip or something, that’s kind of an alert to you and you may want some bone scans, right?
Absolutely. Any time that a patient complains of pain in a new location or something that is persistent, absolutely, you need to get scans, again, because the prostate cancer is prone to go to bone, and the pain doesn’t tell you exactly what’s going on in the bone, and so you need to investigate that.
All right, and Gary, you’ve had radiation. I have a feeling it’s external radiation for where you’ve had these bone issues. Is that right?
Yes, I have. Recently, there was a cancer that was found in my shoulder and I had radiation for that that eliminated some of the pain, but more recently, I’ve had some bone scans and it shows some other areas that have lit up, so right now, I’m on a host of drugs and being watched closely by Dr. Hussain and Brenda.
Okay, did the radiation help –
I’ll be back to see – radiation eases the pain at time, but right now, I don’t think – it’s not a general, overall answer for me.
Okay. Well, we wish you well, of course. I want to talk about bone targeting or maybe bone strengthening agents, Dr. Hussain. I know there were drugs developed for women in particular for osteoporosis, but there are also some benefits that have been around for some of these drugs for people with these bone issues. Am I right? Do they come into play for prostate cancer?
Yes, they do, and there are two general case scenarios where they apply, and I would encourage patients to specifically discuss that with their physicians. Let me start with the simple case scenario, and you brought up the issue of women. As you know, when women go through menopause, or if they are, say, with a specific treatment that causes reduction in the bone density, that is when we talk about osteopenia, osteoporosis, and then the potential medication to strengthen the bone in that direction.
Men who go on hormonal treatment without having spread of cancer in the bone can also have osteopenia or osteoporosis, and so, generally, what we do, once the patient is started on treatment, a bone density, or what we call a DEXA scan like women get when they go through menopause, is done for the men, and based on risk a fracture, usually we calculate that. Brenda is an amazing resource because I can never keep this in my mind. She has an easy access to figure out what the risk of fracture is going to be and that will then guide us in terms of telling the patient whether they need bone strengthening medication or not.
The reason that’s important to distinguish, because the strength of those medications and the frequency of administration is quite different than when we start using those medications for the purpose of preventing prostate cancer damage on the bone, so that’s the two distinguishing factors. To start with, in general, we advise our patients who go on hormone treatment to take vitamin D and calcium, to have weight-bearing exercise, upright exercise, and so on, to try to enhance the bone effect.
Now, if you move to the other stage, which is a spread prostate cancer, at this moment, as far as we can tell from the clinical trials that have been done, if a person has a hormonally responsive cancer that has spread to the bone, there is no clear indication that a bone strengthening medication is necessary at that point.
The flipside is, when patients move into the castration-resistant phase of the disease and if they have cancer in the bone, in that situation, there are agents that are what I would call – minimize the cancer damaging effect on the bone that are generally given on a monthly-type schedule. These are agents that have been FDA-approved, again, based on large clinical trials that demonstrated reduction in what we call skeletal-related events, and what these things are, fractures, pain, different damaging effects of the cancer on the bone.
The one thing I should point out, they are not life prolonging, but they are what I would put under the category of supportive care. The critical part of this is that patients should be evaluated by their dentists to ensure that there is no need to have a major dental extraction or some kind of major surgical intervention on the jaws because, in a certain percentage of men, and certainly in women is the same story, going on these medications and then having to have a tooth extraction or some major jaw procedure can lead to problems with bone healing there. This is the kind of stuff where all dentists have been notified by the FDA and alerted regarding what they need to do.
Okay, and just to be clear, we’ve gone through the range of approved therapies, is there anything that has been changing the landscape of late?
Well, actually, this is a perfect question in terms of timing because, just recently, there was the European Society of Medical Oncology meeting, ESMO, and there’s some very interesting information emerging from large clinical trials that were conducted in Europe demonstrating the potential value for adding radiation to the prostate area in men who have metastatic disease that is responsive to hormone treatment, but do not have a lot of cancer in their bone or lymph nodes, where, in fact, radiating the prostate is leading to a prolongation in terms of overall survival, life prolongation.
I would encourage patients who might have just started hormone treatment for metastatic disease to discuss with their doctors whether they would be appropriate candidates for this type of approach, and certainly, there is a lot of research going on to better understand the biology of prostate cancer and how the cancer escapes the effect of the treatment to try to come up with better treatments to attack it. One of those, I guess, treatments are the PARP inhibitors.
All right. Let’s talk about that. We’re producing this program just days after the European Society of Medical Oncology meeting has happened in Munich Germany, and so news comes out about different approaches. PARP inhibitors that you just mentioned had promise, I believe, in ovarian cancer and now they think in breast cancer, so do they have a role in prostate cancer, Dr. Hussain?
Well, I think my gut feeling is yes. PARP inhibitors have had a track record in ovarian and in breast cancer, and there are several FDA approvals in that regard. We began to discover that there are subgroups of men with prostate cancer who are potential candidates for PARP inhibitors, therapy, and literally, I, just about two days from now, will be giving a special lecture at the Prostate Cancer Foundation and have a table of all the PARP inhibitor trials that are going on in the US or in other parts of the world, and it’s an amazing list of clinical trials.
Several of these trials are what I would consider registrational trials, and several of them have either approved or are undergoing approval. It’ll be interesting to see, at the end of the day, the results because that’s really what’s gonna prove the principle, but the early indication would suggest that it is quite likely that prostate cancer will be one of those diseases that will benefit from PARP inhibition.
Okay, so gentlemen, as you and your colleagues there, your partners take notes about this whole discussion of clinical trials, you should be asking your healthcare team, would a clinical trial apply in my case, and do some research on it. Certainly, a major center like our partner today, the Lurie Cancer Center has trials going on and you need to ask about that. We’re gonna take your questions in just a couple of minutes. I just want to go over a couple of other things.
I have to ask about, I guess, the field of immuno-oncology, Dr. Hussain. People have been seeing that people, even with more advanced lung cancer, have been helped by helping their immune system fight back against the cancer. Does this apply to prostate cancer?
I think, as we talked about, we already have an immune therapy approach, which is the vaccine that is approved for patients with prostate cancer on grounds of prolongation of survival. Currently, there are multiple clinical trials that have been looking at the newer class of drugs, the checkpoint inhibitors, and so far, on the surface overall, there is not a positive result, although we’re learning from all of these trials and that there might be subsets of patients who may be potential candidates and may have a better chance of responding to these treatments.
The other part, there is also work going on with combining the immune checkpoint inhibitors, immune therapy with PARP inhibitors to try to create a synergistic effect against the cancer. There’s a fair amount of research going on, and there are other potential trials coming up looking at essentially what I call personalized immune treatments where the tumor is taken out and then analyzing the cells, and then creating an antibody against that particular cell and putting it back in and so on, and certainly the CAR T-cell, which is something that’s highly celebrated in hematologic conditions.
I know that there’s a clinical trial going on, I believe, on the East Coast, so there’s a fair amount of interest in the immune therapy and its potential in this disease. One of the things that I would encourage patients to consider, particularly when the cancer is in situations where there may not be many options, certainly having a biopsy of the current cancer tumor as opposed to the old biopsy and having it be evaluated for certain features that may actually potentially predict for response to immune treatment.
There is a blanket FDA approval for one of the immune agents in that regard in multiple diseases, so this is where I would encourage every patient to discuss it with their doctor and explore options, either clinical trial or standard of care.
Right, one of the things we can explain to people, and let’s see if I get this right, Dr. Hussain, is the biology of your cancer cells matter, not just that it’s fueled by testosterone, and so now we’re developing these immune therapies where matching up with your biology of your cancer is really important. Did I get it right?
Yes. It’s still work-in-progress. It’s still more of what I would call preclinical, at least for prostate cancer, preclinical, early clinical research phase, but I would say stay tuned. I think that this is a disease that is clearly complicated and clearly very smart, and very much different than other cancers, including lung and other cancers, or kidney cancer, or breast cancer, and so on. Clearly, a focused approach on this cancer and doing research specifically in it to better understand, why does it not respond to normal hormone treatment and how can we outsmart the cancer with new strategies? There’s a lot of work going in that area.
Right. Development on – could there be other anti-prostate cancer vaccines, the checkpoint, or immunotherapies, CAR T-cell therapy, which I know very well in blood cancer, some of my friends have had it for various hematologic conditions. Are there combinations you alluded to with chemotherapy or combining other agents, better bone targeting agents? Just to wrap up on where our window – you’re our window, Dr. Hussain, into research. Are you encouraged about where science is going for the men who are listening?
Absolutely. I would say I got into the field in the mid-80s. I worked in Detroit, and prostate cancer, as you can imagine, was quite prevalent at the time. I worked in a VA hospital, and literally, we were diagnosing prostate cancer as part of an emergency diagnosis. Somebody shows up to the emergency room paralyzed or having severe pain, and then we discover that they have prostate cancer, and from treatment, with hormone treatment, and then death, the time was quite short. We’ve seen a significant prolongation of life, significant progress, and practically, I would attribute the progress 100% to investment in research and partnership with patients in terms of the clinical trials in there.
I will also say this, and this is, again, something that perhaps Gary’s situation highlights, is that men, even when they have advanced prostate cancer, they are likely to live a decade or more, and so I do think it becomes very critical to focus on quality of life, focus on health in general, focus on multiple parts, and as I tell patients – is that, if you give up, nothing I do will make a difference, so having to have a positive attitude and thinking that the glass is more than half-full is very critical, but just to give you a feel, from one of the trials that I ran, more in the late-90s and the 2000s, believe it or not, somewhere about 17% of prostate cancer patients with metastatic disease in fact can live 10 years or longer.
If you think about it, there aren’t many cancers that can do that, and this is in an era where we did not really have that many treatments for patients with metastatic disease, with a spread cancer, so I would say the future is much brighter. It’s never easy to have cancer, there’s no question about it, but I do think that the glass is more than – way half-full. It’s much more than that.
Very encouraging. Brenda, a question for you about trials. There are times when you and Dr. Hussain talk to your patients about trials, and often, people are hesitant, they’re unfamiliar with it, people don’t want to be a guinea pig, but yet, Dr. Hussain talks about all this research and the partnership with patients. How do you explain it to them, about trials, Brenda?
Trials can be complicated, and these are long discussions and they’re important to have. Oftentimes, all clinical trials come with an informed consent document, and this really details everything about the trial, why it’s being done, the expectations, and what the expected outcomes could be, as well as the risks and the benefits, so patients are given this, and it can be quite long and quite overwhelming. Initially, the first discussion is basically about their disease, how they would potentially qualify.
All people have to qualify for the trial, certain eligibility criteria, and then letting them know, oftentimes, the trials at our stages in the prostate cancer population, we see patients with more advanced disease, rarely include a placebo, which is always a big concern, that patients don’t want to be treated with sugar. If, by chance, the clinical trial does have a placebo, that is always included with an act of treatment, so patients are always getting the standard of care with the addition of maybe an extra medication.
Patients oftentimes will know what they’re getting, so it’s rare that things are double-blind, and no one knows what they’re getting. Patients will know what they’re getting, as well as just telling them about the expected side-effects, giving them a chance to think about things, giving them a chance to ask questions. We never have a patient see us in the clinic, hear about the trial, and then sign consent. That is not true consent.
Consent is understanding and having your questions answered, so when we have the initial discussion, we send the patients home with the consent document with everything written down so they can read about it in a quiet environment, discuss with their family members, and then come back for another visit to talk about what their thoughts are, what their impressions are, and if that’s something they’re interested in doing, the clinical trial.
Okay, just a couple of personal comments, I was treated for leukemia in 2000 with a new combination therapy, and they’re studying combination therapies, as well, in prostate cancer phase two trials, so it was not the earliest trial, but not the latest, and the combination I got, which worked for me and gave me a 17-year remission in that leukemia, that was approved ten years later, so I got it ten years early. There’s the chance of getting tomorrow’s medicine today.
You have to consider it, there are a lot of good options now, do these options that are being studied make sense to you, and evaluate that with your healthcare team. That’s my plug for trials, to at least consider it, not be afraid of it. Dr. Hussain, we had a question that came in from William, and he wonders if he, at that point, doesn’t have metastatic disease, but he might develop, that would be a fear, how do you delay it, and is that just all these different procedures you were talking about?
Well, if a person – if William has had a diagnosis of prostate cancer, and assuming that it was the type of cancer that requires treatment, essentially everything we do in the beginning is intended to not only delay, but hopefully prevent metastases, and so, depending on how, big is the cancer in the prostate, how aggressive it looks, how high is the PSA when local therapy is done, it could be done either by itself or surgery or radiation, or we would add, potentially, hormonal treatment for a finite period of time with the intent of essentially cleansing the system from any cells that might be running through the system there. This is sort of the upfront type treatment with the hope, again, not to delay, but rather prevent, and certainly, it could delay the prostate cancer.
Okay. Catherine, you’ve been sitting here, and I want to ask you some questions that are so important, and one of them is, let’s say whether you went to Dr. Hussain or another doctor somewhere and you still have questions in your mind, should a patient be hesitant about seeking a second opinion?
Never. That’s actually something – here at Northwestern, we’re really lucky to have people like Dr. Hussain and Brenda, who are wonderful practitioners, but for anybody else, and anybody here, if you do have any questions, please don’t ever hesitate to reach out to your own physician and ask clarifying questions, or the nurse practitioner, or go seek a second opinion somewhere else. This is your body, your family, your relationship, your life, and so you need to be as most informed about it as possible, so I really encourage that, and if you’re struggling with that, also, please always reach out and ask to speak with a social worker and they can help you formulate what questions to ask.
Catherine, another question for you. Gary talked about how he got his head on straight for him related to libido and sex. That’s a touchy issue depending upon your age and maybe just how you feel about it. How do you counsel patients, maybe couples, about communication related to the sexual issues?
Sure, of course. That’s something that, for anybody listening, I would really want to empower you to ask those questions. As Andrew just pointed out, oftentimes those are topics that people might not feel very comfortable bringing up and talking about with their doctor, but find somebody that you do feel like you can talk to about this, so whether that’s the doctor or the nurse practitioner or a social worker, know that there are urologists who specialize in the physical aspects and that there’s also people like social workers and health psychologists and sex therapists that can help you identify new ways to be intimate with your partner or yourself.
Sexuality is a very crucial component of people’s identities, and also their day-to-day life, so I think that just because it’s a touchy subject, doesn’t mean that we shouldn’t be talking about it.
Brenda, here’s a question for you. Joe writes in, he’s wondering, if PSA goes down, a man already has prostate cancer, should he feel secure that the disease is not progressing? In other words, can it fool him into a sense of security when maybe the prostate cancer is progressing, but the PSA has gone down?
PSA gives us an idea of what’s happening, but it doesn’t tell the full story. Oftentimes, you can do PSA, but then you also need to look at imaging if that’s appropriate for the patient, as well as physical exam and other laboratory findings. The PSA itself isn’t the end of the story. It gives us an idea. Now, obviously, if your PSA is 0.0, which is undetectable, and depending on the stage of your prostate cancer and your therapy approach, it is reassuring when your PSA is down, but again, that’s part of the picture and your provider, talk with them, will be able to help address that question, as well as comprehensively evaluate you basically head to toe as needed.
Another question for you, Brenda, and that is from Kevin who had his prostate removed at age 55, he’s 62 now, and his PSA has remained zero. He has two sons, 34 and 32, and he wonders, should they have some kind of genetic testing? In other words, are they at risk?
That is a really good question and it’s based on family history, as well as the characteristics of the prostate cancer. We actually have a genetic counselor that works with us specifically for prostate cancer, so if you have any concerns about a hereditary component or your sons being at greater risk, please discuss that with your current provider and talk about wanting to meet with a genetic provider. They’ll be able to look at the family very comprehensively and take a cancer history, and then, based on that, they’ll be able to guide you as to what they recommend and what sort of additional testing should be completed.
Okay, Dr. Hussain, we got this question in from Stephen. He says, at what level, what PSA level, do you start hormone therapy – when he’s got a second recurrence, and also, at what PSA level can a scan find out where my cancer is located?
Maybe I can begin with the second question, and that is at what PSA level the scans will be positive, and the answer is, there is no specific PSA level for that. When there is suspicion and there is concern about a relapse, certainly scans are appropriate. The one thing I should point out, the lower the PSA, the less likely that the scans will be positive. Having said that, if a scan is done and it’s negative, conventional scans as in bone scan and a CAT scan, there are, right now, specialized imaging that is FDA-approved called Axumin PET scan, which is approved by the FDA for men who do have what appears to be an elevated PSA, but certainly negative scans, otherwise. I’m sorry what was the first question?
The first question was, at what PSA level do you start hormonal therapy for a second recurrence?
Right, so I would say this is one of, perhaps, the longest conversations with patients. If a patient has a PSA relapse and has received, already, radiation treatment, then certainly, imaging is gonna be critical, and if the imaging is negative, then it’s essentially a conversation about pros and cons because there is really no indication at this moment starting the hormone treatment earlier somehow prolongs life, and there’s obviously the trade-offs of potential side effects from the hormone treatment.
For patients who actually have a second relapse and you do scans and there is definite evidence of relapse of metastatic disease, irrespective of the PSA level, I would say, in that situation that the hormone treatment is – and additional potential treatment is what I would recommend for the patient.
Here’s one we got from Bob. Bob says, given that there are second-generation drugs for androgen deprivation therapy, why would one ever start with a first generation, Dr. Hussain?
Well, I think maybe we can clarify so that there is not a mixing of the intent of the words. Essentially, the hormone treatment, the backbone of the treatment is going to be suppressing the testis, and so that is sort of the – at this moment are the injectable agents. The first generation, so to speak, androgen-targeted agents like the Bicalutamide and drugs of that class are generally pretty much not that much used in the situation where patients have metastatic disease where we’re beginning to see benefits from the second-generation and much more powerful.
The difficulty is gonna be essentially like anything else. Prostate cancer is not one-size-fits-all, so depending on the stage of the disease, the prior exposure to the treatment, whether the cancer is resistant or not resistant, hasn’t seen hormones before or not, the second-generation agents are sort of making their way into the different stages of the disease.
Bob sent in a key question, and he says, simply, what does the word cured mean when it comes to prostate cancer, Dr. Hussain?
Cured, that is a word for any cancer, is you live and die from another natural cause with no evidence of cancer presence. The one thing about prostate cancer, one may not be cured from it, but it certainly is amenable to living with it without it causing harm, which means there are times where the PSA is elevated, the scans are negative, and the PSA is slowly going up, and like anything else, no human being will live forever. If, in fact, there is cancer activity, but it’s not visible, a person could actually live and die from something else and not the prostate cancer.
Is it true what I’ve heard, that most of us, as we get older, I’m 68, even if prostate cancer hasn’t reared its head, if you did an autopsy and we live a long life, you’d find some evidence of some of it?
Correct. In fact, there were some statistics – by the way, 68 is not old. So basically, the answer is yes, the prostate can actually harbor what looks like prostate cancer, but that is not necessarily something that’s gonna behave like a cancer, and certainly, there were some data, and I don’t recall when it was published, but it was decades ago, where if – the essence of it is, if you took the prostates of men in their 80s, a good percentage of them will, in fact, have evidence of cancer in that prostate, but that never manifested itself.
Okay, Kevin sent in another question. I want to get to that as we just have a little time. Kevin said, of the 29,000 men who will die from prostate cancer each year, do they die directly from the prostate cancer or do they die from some form of the spread of the cancer to other parts of their body?
It’s the latter, the spread of the cancer to other parts of the body, and patients always ask, if I’m gonna die from prostate cancer, how am I gonna die? I always mention to them, almost, it’s attrition. It’s essentially the gradual failure of the body because of the cancer essentially imposing itself on different parts of the body. Unlike some other situations where people die from bleeding, from difficulty breathing because there’s a buildup of the cancer in the lung, or something like that, the vast majority, again, of the patients who die from prostate cancer don’t die because of bleeding, don’t die because of infection, they just gradually – it’s body attrition, basically.
Catherine, we’ve heard a lot over the last 90 minutes, and we’re just talking about maybe where prostate cancer spread. Dr. Hussain and her colleagues and Brenda working together around the world are trying to knock it back, and Gary’s been living that, but there’s a lot of uncertainty for the man and his family. How do you counsel people to go on? I mean, Gary is going on, but just generally, what do you say to people when there’s this uncertainty of living with the cancer, trying to control it as best you can, but you don’t know how long that’ll last?
Right, so a lot of it is figuring out how you best cope, right? That can be support groups, and you can find support groups through organizations like us, too. You can also find really great education materials on there, that sort of thing, but as Gary also mentioned, oftentimes, men with prostate cancer don’t really want to talk about it. For example, I don’t see many men with prostate cancer in my clinic just because talking one-on-one with somebody isn’t what they’re interested in, so in that case, then I really encourage any form of informal support groups that you can find and that can just be creating a group of friends to go golfing together or something like that.
You don’t even necessarily need to be talking about the cancer, but having a support system around you, or having one or two people who you do trust that you can talk to about this, whether it’s your significant other, a friend, another family member. You don’t have to tell everybody what you’re going through if that doesn’t feel comfortable to you, but having at least a few people, one or two in your life, that you can talk about what you’re experiencing can be really beneficial for people.
Okay, thank you. That’s wonderful advice. I just want to – as we wrap up, I want to mention a couple of things quickly. See if the clinic you go to has a social worker you can talk to. They can help you with financial issues, communication issues, travel issues, even if you’re going to a clinical trial, sometimes there’s logistical support to help you with that, and certainly, with communication. It’s so important to talk to your doctor, your nurse practitioner like Brenda, and call with questions, call with questions, right?
We talked about the sexual issue, the emotional issues, all important. Just a final word, Gary, what do you want to say to the men and their families who are listening to maybe give them some hope?
There’s always hope. I mean, there’s always hope. I don’t take where I am right at this particular point and say that I’m giving up any hope. I’m not giving up anything. I’m still planning to do things, and I believe that around the corner will be the next challenge, but that’s not gonna stop me from planning a Harley ride next week or getting out to Phoenix and going up in the mountains with my motorcycle or jumping in my Corvette and zipping around the neighborhood. When we hang up here, I’m going to get up to the Oakland Hills and go have some laughs with the guys.
There is no – to me, there is that, what I call, the dark 30 in the middle of the night where you get scared, but you’ve got to stop that, and if you really are scared and you reach out and you type something through these portals, we have some tremendous communications. Northwest has got the portal. Every hospital now and every caregiver has a portal. You can be very open and honest and ask the questions, and then, if you need to, you zip down, and you go see your doctor. I did something that most people won’t do. I followed Dr. Hussain to Chicago. I lived in Bloomfield Hills, and next thing I did is I now have an apartment just minutes from the hospital on the 33rd floor. It’s a penthouse apartment.
With a doctor you trust. With a doctor you trust, and that’s so important.
With a care team I trust.
Care team, right. So true, and we have two of them with us, too. I want to say, Brenda, thank you so much for being with us, and I want to urge people, and Gary just stressed it, the care team, it’s the whole package. It’s an eminent specialist, a doctor such as Dr. Hussain, it’s a nurse practitioner, it’s a social worker, and sometimes it’s a financial navigator. There are people there to help you. Hey, Brenda, thank you so much for being with us.
You are very welcome, and I’d like to say that the patient is always in the center of that circle surrounded by the providers.
Amen, and the family members, ask questions, speak up, ask questions, and Catherine, I wanna thank you so much for being with us. Your field of oncology social work is so critical to help us feel more confident.
Thank you, Andrew. It’s been a pleasure.
Lastly, Dr. Maha Hussain, you’ve been devoted to men with prostate cancer for decades and helping spur research. Now you’re in Chicago. I want to thank you so much for being with us, and I want to thank you on behalf of the prostate cancer community, I’m sure I speak for them, for your dedication.
Thank you very much, Andrew. It’s been a pleasure, and as I said, I think the future is much brighter, and it would be great for patients to contact their physicians, speak with their care team, and also access material that’s available through different venues, which I’m sure you have them available for them, but I would encourage you to look at what I would call vetted material because that would really, really help you also prepare.
Right, wonderful, and certainly, there’s information from your hospital at Northwestern, The Lurie Cancer Center, from patientpower.info, from the Patient Empowerment Network, that’s one of the supporters of this program, of course, and also, Us Too International was mentioned in male care, ustoo.org and malecare.org. Thank you so much for being with us. I want to thank our supporters for this program, Astellas and Clovis and Pfizer, and certainly, I want to thank the Patient Empowerment Network. Signing off from Philadelphia and wishing Gary and all of you the best of health, I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.
https://powerfulpatients.org/pen/wp-content/uploads/Tools-for-Living-Well-With-Prostate-Cancer.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2018-11-07 17:23:572021-06-24 11:54:13Tools for Living Well With Prostate Cancer
June is National Men’s Health Month. This month’s patient profile emphasizes the importance of continuing to explore options for maintaining optimum health after diagnosis, treatment, and recovery.
Peter Blaze Corcoran concedes that there is never a good time to get a stage four cancer diagnosis, but he says his diagnosis came at a time in his life when he felt secure in managing it. It was 2015 and he was a university professor nearing retirement. He had insurance, a supportive employer, and access to excellent medical care. “It came at a time when I was mature enough, secure enough, and knowledgeable enough,” says Peter. “I felt quite stable in dealing with it.” It was prostate cancer, a particularly aggressive form that was not confined to the prostate. Treatment required a radical prostatectomy and several months of radiation. During treatment doctor’s discovered a second cancer, liposarcoma, but fortunately it is non-threatening to date.
During his treatment, Peter was able to continue working part time which he says helped with his recovery. “It was a bit of a life line being able to work during treatment,” he says. “Work is so central to one’s identity.” The diversion of work meant Peter was able to maintain his pre-diagnosis identity. “I was not a cancer patient, but a professor who was still writing and administering.” It was important to him to maintain that persona because his goal was to return to the classroom, finish his career, and to be able to “go out on top” rather than retire early due to cancer. “The goal was to get back in the classroom, to teach again, and do another book and be involved in the university,” he says. “Which I was blessed to do.”
Peter retired this year and while he does have some health difficulties as a result of his cancer and treatment, he now has no evidence of disease (NED). He also has some other lasting effects from his experience. “I think I’m on a different path than I would have been without the cancer,” he says. “Cancer is an effective teacher.” Peter says he hopes he has learned to be more compassionate, empathetic, and more humble, and that he has developed a deeper gratitude for life. Cancer has been a source of spiritual development for Peter and he says it has brought him into what he calls a sacred space. “A diagnosis this serious is a wake up call to deeper questions.” says Peter who used his experience as a means to address life’s bigger questions, including questions about his own mortality and about the amount of suffering in the world. He also tackled the “why me” and “will it come back” questions, and in the answers he found what he calls a turning point. “I wanted to craft a life that diminishes the chance for cancer to return,” he says.
To do that, Peter turned to the Commonweal Cancer Help Program (CCHP). The program is a week long retreat for cancer patients in Bolinas, California. Patients can attend the retreat at any stage of their illness, but must be under a doctor’s care and able to care for themselves during the remote retreat. Each retreat is open to 8 or 9 participants at a time and focuses on integrative healing techniques. Peter says treatments include music, art therapy, qi gong, individual and group therapy, traditional Chinese medicine, massage, exercise, and nutrition. “Commonweal helps you integrate treatments and the importance of good nutrition,” he says. Patients develop a practice of intentional healing and Peter says it is a great opportunity for insight into your own cancer. While the program is expensive, Peter says there is a scholarship program. “Many people who’ve been there have made it possible for others to go,” he says. While Peter recognizes that Commonweal’s broad-minded approach may not be in some people’s comfort zone, he says that one of the lessons he learned from having cancer was to say yes to all forms of healing. He says that he had the best of western medicine and he’s grateful for that, but that he continues to be open to a variety of modalities and methodologies that can help him. “What distinguishes Commonweal is that they have analyzed and studied all methodologies that have helped people,” he says. “I feel as though it’s really helped me make a turn for the better in my life.” Peter adds that the program empowers patients to care of themselves. “You set your intention,” he says. “The power comes from setting your intention.”
A career educator, Peter moves forward with the intention of teaching others the lessons he’s learned. He’s very thoughtful about what he wants to share and he emphasizes the importance of his faith community to him and how comforting it was to him to know that people were praying for him and his healing. “My faith community was extraordinarily important in my recovery,” he says and credits being open to the power of prayer in his healing process. Peter encourages others to be open to a variety of healing, too. “It’s good to say yes and stay open to all possible ways of healing whether it takes you out of your comfort zone or not,” he says. Another thing Peter says to say yes to is a buddy. “It’s important to have a cancer buddy,” he says. Find someone who has been through cancer and can give you advice and can help you through the process. He credits his cancer buddy for helping him to be open to the opportunities that cancer might bring. She told him that if anyone should ever mention the word cancer to him, he should stop and pay attention. “Listen for the opportunity to help others,” he says.
You can learn more about the Commonweal Cancer Help Program at commonweal.org.
“In a society which is much more inclined to help you hide your pain rather than to grow through it, is necessary to make a very conscious effort to mourn.” -Henri Nouwen
Grief is a natural response to loss. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part it. Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.
Coping with the losses associated with cancer is challenging. Grief brings many emotions with it. Patients as well as caregivers and family members may go through emotions of anger, denial, and sadness. While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life.
10 Ways to Cope With Cancer Grief
1. Acknowledge Your Feelings
Attempts at avoiding or ignoring difficult feelings hinder the healing process. Nancy Stordahl, who writes about living with breast cancer on her blog, Nancy’s Point, says we need to “grieve for things we’ve lost to cancer. We aren’t the same people in some ways post diagnosis. We have lost parts of ourselves (figuratively and literally). We need to grieve for people, things and pieces of ourselves we have lost. Too many times we aren’t given the time or ‘permission’ to do so.” By facing our losses and feeling the pain we allow grief to take its natural course and can emerge the other side with greater self-awareness and acceptance.
2. Tune Into What You Are Feeling
It is helpful to get into the habit of checking in with your feelings. Take a moment to stop and be still. Breathe deeply. Now ask yourself what you are truly feeling. Grief? Guilt? Sadness? Anger? Whatever arises, see if you can just be with the feeling and feel it fully without judging your thoughts or emotions. Is there a physical discomfort associated with this feeling? For example, when you’re anxious or afraid, you may notice a tightness in your chest. Can you soften and relax those areas of tension in your body? You may find the intensity of your feeling lessens as you do this exercise. If the emotion deepens or adds to your distress, discontinue the exercise and try again later.
3. Write Down Your Feelings
If you feel stuck when sitting with your emotions, try journaling about the experience. For some people, it’s easier to write thoughts and feelings down on paper than to say them out loud. Keeping a journal to write down your thoughts is a way to come to terms with your feelings of grief. Many cancer patients choose to write about their feelings in a blog. Blogging in a community of other patients who understand what you are going through can be very therapeutic (to learn more about starting a blog read this earlier post).
4. Take Care of Your Physical Health
Grief is as much a physical as an emotional process – (we often refer to grieving as ‘grief work’) – so it’s important that we get a good night’s sleep, take some exercise and eat healthy meals to regain our physical strength and heal fully.
5. Pay Attention to Grief Triggers
Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken sad memories and feelings. Plan ahead for those times.
6. Go At Your Own Pace
There is no time-table for grief, yet so often we push ourselves to ‘get over’ our grief as quickly as possible. Adapting to and coping with cancer is a process, which neither you nor any well-meaning friends or family should rush you through. Grieving is not something that occurs once and then you are ok. Psychiatrist Elisabeth Kübler-Ross introduced what became known as the ‘five stages of grief’ as a way of looking at grieving process, but quite often these stages don’t follow a sequential order. In reality grief can be much more disordered. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your experience, it’s important to be patient with yourself and allow the process to unfold naturally.
7. Learn To Adjust To Your New Normal
Often we want to rush through our grief (or others want us to rush through it) so we can get back to ‘normal’ again. The thinking behind this is when we ‘get back to normal’ we are healed. But we may find that it is no longer possible to go back to who we once were.
Your ‘new normal’ may include adapting to changes in energy and activity levels, adjusting to changed relationships at work and in your personal relationships, coming to terms with an altered body, and managing pain and treatment side effects. Be compassionate and gentle with yourself as you move through this process. Don’t judge yourself or try to hurry the experience along.
8. Take Stock
Many people see this as a time to create a new way of being in the world. Psychotherapist Karin Sieger sees in this time “opportunities of reflection, contemplation, looking at life and ourselves. And sometimes new realizations and decisions can come from that”. Ask yourself what is most important to you now? How do you want to live each day? Hidden within grief is a healing potential that eventually can strengthen and enrich life. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.
9. Don’t Go It Alone
Grief can feel very lonely, even when you have loved ones around. Turning to others who have experienced similar losses can help. Look to cancer support groups in your area or search online to connect with those who truly understand what you are going through. Talking to a psycho-oncologist or counsellor can also help.
10. Recognize There Is No Right Way To Grieve
Grief is a highly individual experience. How you grieve depends on many factors, including your personality and coping style. Commenting in her last book before her death in 2004, Kübler-Ross said about the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Don’t let anyone tell you how to feel. Your grief is your own, and no one else can tell you when it’s time to ‘move on’ or ‘get over it’.
When Grief Doesn’t Go Away
We all cope with grief in our own way and most of us reach resolution and acceptance in time. It’s normal to feel sadness, depression and grief following a loss, but as time passes, these emotions should become less intense. If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression. If your grief is overwhelming or lasting for a prolonged time, seek out a mental health professional with experience in grief counselling. They can help you work through your feelings and overcome obstacles to your grieving.
Grief can be a roller coaster full of ups and downs, highs and lows. It takes courage and time to work through your feelings of loss. Grief counsellor Taruni Tan has written that “everyone’s healing process is unique and while there may be universally recommended tools and techniques to try, we each have to discover our own individual formula.” The good news is that most of us who grieve recover with time. We may be radically changed by the experience, but we find a way to continue to face the future.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
https://powerfulpatients.org/pen/wp-content/uploads/MEO-March.png600600Marie Ennis-O'Connorhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2018-03-27 16:19:062022-11-08 13:57:50Grief, Loss, and the Cancer Experience
Cancer can happen at any age, but it’s most common in the elderly. The American Cancer Society explains 87% of all cancer cases in the United States are diagnosed in people 50 years old and over. Cancer in older age brings with it many unique problems, including, pain, depression, loss of strength and fitness, cognitive decline, and dementia. If you’re caring for an elderly cancer patient, it’s important you coordinate with their cancer team. Recovery plans focus on physical, social, and emotional health to give senior cancer patients the best quality of life possible.
Prepare healthy food
It’s never too late for anyone to start eating healthy. It’s important you give the elderly person you’re caring for enough nutrients from a variety of fruits, vegetables, dairy, pulses, and grains. Red and processed meat should be limited, or preferably avoided altogether. You should also check with their doctor whether they have any special dietary requirements.
Cancer patients often have reduced appetite. The key is to give them calorie-dense food — soups, smoothies, and stews, for example. It’s also important to set routine family meal times. Socializing is an important part of recovery.
Protect their safety
An elderly cancer patient is in a vulnerable position. Do your best to make sure they’re safe around the home before they return from the hospital. Install night lights in the hallways and bedrooms. Ensure carpet is securely fixed in place and remove loose rugs to prevent falls. They may need help with everyday tasks, such as, bathing, dressing, moving around, and going to the toilet.
Unfortunately, cancer treatment takes its toll on the body and mind. It often leaves patients fatigued, which is a feeling that can often strike without warning. Nonetheless, a gentle yet regular amount of physical exercise is highly beneficial seniors. Not only does it boost their mood, but it also helps improve mobility, strength, flexibility, and balance.
Give emotional support
Cancer treatment is stressful, but talking about it can help. While it’s up to the senior you’re caring for how much they open up, let them know you’re there for them if they want to talk. They may also be interested in joining a support group for practical advice.
About the Author: Chrissy Rose is a Content Manager and is working to build one of the best senior resource sites.
https://powerfulpatients.org/pen/wp-content/uploads/Cancer-Recovery.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2018-03-13 19:29:552022-11-09 15:58:21Health Tips To Support A Senior Through Cancer Recovery
What is significant to Kirk Beck is not that he’s had cancer. He delivers his story with minimal detail about his diagnosis, his treatment, and the subsequent life-threatening complications he endured as casually as he might tell you what he had for breakfast. It’s not until his wife Kelly joins the conversation that the full impact of Kirk’s medical history becomes clear.
“He wouldn’t have lived to be 50,” says Kelly of the first time Kirk was diagnosed with cancer. They weren’t married then, but it’s not lost on Kelly that their marriage never would have happened if he hadn’t survived. “It was caught very early and he was lucky,” she says. What’s lucky is that Kirk’s prostate cancer was detected at all. It was the mid-90s and he was 44, much too young to have a prostate screening in those days, but Kirk had a friend with the disease so during a routine physical he insisted, despite his doctor’s protest, that he get tested.
That test ultimately resulted in his diagnosis and a radical prostatectomy. Through the help of his brother, a physician, he sought treatment at Johns Hopkins Hospital where the surgery was done using the “nerve-sparing” technique — which helped prevent side effects such as urinary incontinence and sexual dysfunction. The surgery was a success, the cancer hadn’t metastasized, and Kirk didn’t require chemotherapy or radiation. “I got operated on and came home,” he says and in the 20 plus years since he’s had no recurrence or side effects.
He did, however, get another cancer diagnosis. This time he had tonsil cancer in October 2005. Within days his tonsil became extremely swollen. He had surgery the next month, followed by chemotherapy and radiation which was accompanied by a drug designed to protect his salivary glands from the radiation. This time there were complications. By New Year’s Eve he was back in the hospital and then again, after his second round of chemo, at the end of January 2006. He had what he calls episodes of extreme pain. “It was excruciating. Unbearable,” he says.
What he had was a blood clot, portal vein thrombosis, which is a rare condition to which he had a very rare reaction, and his small intestine had begun to die. He was unable to digest food and was vomiting a lot. His body had created what is known as collateral veins which were enough to keep him alive, but not enough to prevent damage to his small intestine. The hospital told Kelly that there was nothing more they could do. He was too high risk for surgery, they said. She was advised to contact hospice care.
“If I had listened to them, he would be dead. I just knew deep down this wasn’t supposed to be happening this way,” says Kelly, who instead of calling hospice called Kirk’s brother, the doctor, and got Kirk back to Johns Hopkins where they were able to save his life.
Of course, it wasn’t that simple. Kirk required intensive and careful treatment of his clot, continued radiation for his cancer treatment, and surgery to remove the damaged area of his small intestine. The process was scary and daunting and full of unpleasant details, but that is not what Kirk chooses to focus on. “If you look at it properly, it’s a gift. Not a penalty. Not a punishment. It’s an opportunity to reconsider your perspective on life,” says Kirk.
“It was a great experience. It might be strange to say, but its what I believe. It’s not something I want to go through again, but it was priceless. It changed my entire life and made me a lot more appreciative.” That is what is significant to Kirk. Not having cancer twice. Not having a life-threatening blood clot, but the living that he has done and the opportunity that these experiences have given him to help others. “I’ve been able to share my story and offer help to others that I couldn’t have offered without the experience. People knew I was speaking the truth. There’s no fiction in it. I try to give people a real and truthful perspective and that is invaluable.”
Kelly has a similar take away. She says the experience afforded her a new perspective, but also made her a strong advocate for patient empowerment. “Don’t always accept what they say. Be an advocate,” she says. “If you have a bad feeling and you are not getting answers, go elsewhere. There are so many places you can go for information. Take advantage of every opportunity. Having a good, strong advocate will save your life.”
In addition to his two bouts with cancer, Kirk has had a number of pretty considerable medical issues over the course of his 67 years, but he’s never let any of it slow him down. “Everyone has their own journey and also their own destination,” says Kirk who believes that a positive attitude is crucial to recovery. “You just can’t allow yourself to be destroyed by these situations.”
Today I am a male survivor of bladder and prostate cancer – annual Oncology visit…still here, still healthy, PSA still less than 1%. Possibility for bladder cancer’s return are extremely minimal. That’s now six years in remission. Now thinking about removing the alien (aka port). To those either starting to deal with this inconvenience or have dealt with it…STAY POSITIVE!
Where it began…. The port was installed yesterday. No big deal, only discomfort came from injection site for the IV (I have crappy veins) and learning how not to sleep on my right side…could be worst. Day 1 of chemo was this morning not bad. I have an incredible oncologist, he’s upfront, informative and has a sense of humor!! The entire Cancer center staff is incredible. With their support, my great friends and especially my wife, the road (although, interesting) will be made a lot easier. Day 2 (consisting of three significant meds) will be interesting.
Completed my first round of chemo yesterday, only two rounds (8 treatments) remain. What have I learned; trust your doctors, do your research to be as informed as possible, surround yourself with positivity, support your body’s recovery by; eating, staying hydrated, and stay positive.
Last week’s sessions marked the halfway point for me, as well as reminded me how tough back to back treatments can be. The good news, my oncologist feels chemo is working and that’s all I need to know. My Christmas present…no treatment this week, well deserved!!
Having a positive, ‘I will survive this’ approach is the only one to take if living is your objective. Due to the aggressiveness of my ureteral carcinoma, bladder removal is being proposed as the best (next step) option. It’s the consensus of four doctors. This includes my oncologist who is someone that consistently emphasized a focus on my life’s quality and quantity above all else. As a result, we continue to have very frank and realistic conversations. Essentially, I trust him. It will be a significant change, however a good friend endured a similar situation more than six years ago. Her insight benefited me greatly during chemo and I’m certain, will continue prior to and after surgery. Stay positive and continued success to you.
A year ago, my life changed significantly…I was diagnosed with stage 3 bladder cancer. Later it was determined prostate cancer had also joined the party (need to limit those medical malady invites). The prior 12 months allowed me to experience (against my better judgement) life’s highs, lows and a great deal of uncertainty. But with support of friends, their prayers, a positive mindset, humor, access to an incredible medical staff, and an extremely supportive wife, I’ve continued to stay upright. Manage to stay upright despite; 12 rounds of chemo (Cisplatin sucks), bladder removal/reconstruction, losing 30 pounds in 2.5 weeks’ post bladder surgery, an inability to taste food during the holidays (not to mention I couldn’t drink), a dreadful winter, multiple catheters and pills, lots of pills. Not that I think about it…. I didn’t have a good time.
This week my last three-month consult was completed. All the news received was the best I could hope for….no indication of cancer at this time. Now I am no longer a patient, but a patient/survivor who should share his experience with others. To all of you who posted to my diary…. THANK YOU!! I can only hope to do the same for others!
As a patient advocate you may be invited to speak in public about your cause, and while some of you will relish this opportunity, many others will find it daunting. According to the National Institute of Mental Health, 74% of people suffer from speech anxiety. Surveys show that the fear of public speaking ranks as one of the most common phobias among humans. There’s even a name for it – glossophobia – the fear of public speaking. Whether you are daunted or excited by the prospect of speaking in public it pays to have a plan in place to communicate effectively. For a presentation to impact an audience and be memorable, you must structure the content, design the slides, and use public speaking techniques effectively. Next time you are asked to deliver a presentation, follow this step-by-step guide designed to help you become a more confident, prepared, and persuasive speaker.
STEP ONE: PREPARE YOUR TALK
Good presentation skills begin with thorough preparation. Here are seven tips to help you prepare for your next talk.
1. Decide what you want to say. What is the purpose of this talk? What do you want your audience to know, feel, or do after they have heard you speak? Your presentation should have a purpose, something that the audience walks away eager to do. Write down your core message in one or two clear sentences. Include a call-to-action (CTA) detailing exactly what should happen next. If you find that you have several messages you would like to deliver, challenge yourself to focus and simplify your message. Once you have a clear focus for your talk, you can then group your other ideas around it.
2. Know your audience. Who will be coming to your talk? Why are they coming to listen to you? What do they already know about the topic you will be speaking on? Find out as much as you can about your audience so you can better speak to their interests and in the language they are most familiar with.
3. Do your research. Do you want to present facts and figures in your talk? Are there any research studies you could incorporate to make your core message stronger? Use online tools like Symplur, the Journal of Internet Research (JMIR), and Google Scholar to help you with your research.
4. Structure your presentation. Now it’s time to put your key messages and research points together in a structured way. Having a structure is a helpful roadmap to keep you on track and to allow the audience to follow along with your points. Start with astrong opening, for instance, share some compelling statistics, outline a current problem, or share a memorable anecdote. If you feel comfortable sharing a personal story, this is one of the most effective ways to get your audience to pay attention. Stories leave a lasting impression on listeners. Patient advocate Martine Walmsley points to the importance of sharing your patient story because the story “behind the diagnosis is a side researchers and clinicians don’t usually see. Don’t assume they already know those details.” (Read Why Your Patient Story Matters for more tips on how to tell your patient story). Healthcare consumer representative and patient experience consultant Liat Watson advises patients to speak from the heart. “People want to connect with you and your story”, she says, “Share like you are sitting around the kitchen table”.
Next, organize your main points into an order that will make sense to your listeners. Reflect on your key points and how you might emphasise them. Finally, determine the take-home lesson (CTA) you want to close with and how you will convey this to your audience. Your CTA should transmit a sense of urgency. Why is it important they hear your message and act now? What will happen if they don’t act?
5. Add visual interest. If you decide to use slides in your presentation aim to create highly-visual slides with minimal text. Never cram information onto your slides. Instead, present one idea per slide so the audience can process each point fully before being presented with another idea. By presenting only one point at a time the information is easier to understand, and the audience is less likely to experience information overload. Avoid excessive use of bullet points, not only do they contribute to the phenomenon known as Death by PowerPoint, but they are also proven to be an ineffective method of communication for presentations. Take care when choosing fonts for your presentation– how you present your text is an important factor in making your slides clear and compelling. Type Genius is a useful tool to help you find the perfect font type and which fonts complement each other.
For a change from the usual PowerPoint presentation, consider using an alternative such as Keynote (for Mac) Prezi or Haiku Deck. Whichever tool you decide on, your slides should be visually engaging. Make good use of diagrams and charts and find some compelling images to hold your audience’s attention. When choosing an image make sure it is high resolution so that it will still look pleasing to the eye when it is blown up to full-screen proportions. Don’t be tempted to use an image you have sourced from a Google search unless the image is licensed “Creative Commons”. Instead look for images on sites such as Foter, Pixabay, and Unsplash, all of which gives you access to a bank of high resolution free-to-use photos. As a general rule of thumb, stick to one image per slide – anything more than that simply looks too cluttered. If you want to add text to a background image, choose a background with plenty of “whitespace” which will allow the text to be read clearly. If your image is lacking whitespace, try applying a blur effect or a gradient fill when you want to add text to your background.
6. Stand and deliver. Rehearse out loud using whatever slides, notes, or props you plan to use during your talk. Don’t simply practise by sitting at your desk clicking through your slide-deck; stand and deliver your talk as if you are doing it in front of an audience. Work on your voice intonation and emphasis, flow and transitions, and practise controlling filler words, like “ems” and “ahs” (Toastmasters Internationalpoints out too many fillers can distract your audience). Crohn’s disease patient, Nigel Horwood, who has spoken to a large audience of nurses at Kings College Hospital, London, UK, recommends reading your talk out loud when you are practising. “I find that simply reading through what I have written doesn’t pick up the likes of over used words or even ones that are missing. Much better to hear it being read,” he has written in his blog Wrestling the Octopus.
Modulate your speaking voice to a lower pitch (if you can do so without sounding unnatural); the deeper the pitch of your voice, the more persuasive
and confident you sound. In “The 5 P’s of Powerful Speaking for a Memorable Speech”, professional speaker Pam Warren points out that “in public speaking clarity and tone are far more important than volume in that they imply authority, a certain gravitas and above all, confidence.” When speaking on certain points you may want to stress their importance, so practise the power of the pause – a slight pause before you’re about to say something important. Take a printed copy of your text and make marks, such as a forward slash (/) or use color coding in your paragraphs to remind you to pause at key points in your talk.
The most important thing you should practise is the opening of your talk. Focus on conveying a strong, confident start which will set the stage for everything that follows. Time your presentation using a stopwatch, or one of the many free countdown timers available online. After practicing a few times on your own, ask a friend to listen to you. If you don’t want to do this, video or audio record your presentation so you can play it back and see how you might improve on delivery.
7. Final preparations. Make sure you have a good night’s sleep the night before your talk and have your clothes freshly pressed and ready on hangars. Back up your presentation to a flash drive (or the cloud), pack a plentiful supply of business cards and handouts (if you are using them). Health consumer advocate Melissa Cadzow recommends making it easy for people to follow up with you after your talk, by having a dedicated business card for your patient advocacy work. She also recommends including information on your LinkedIn and Twitter profiles and providing an email address in your presentation slides.
STEP TWO: DELIVER YOUR TALK
It’s the day of your big presentation. Plan to arrive early so you can familiarise yourself with the room, meet the technical team, check your slides are working correctly, and practice using the microphone.
When you take to the stage, resist the urge to begin speaking straight away. Take a few moments to ground yourself – set your feet slightly apart, toes pointing towards the centre back of the room (this gives you balance and is the most secure and comfortable way to stand when talking). Pull your shoulders back and down – this allows your chest to expand, so you have more breath when you begin to speak. Make eye contact and smile at your audience which will help to relax you if you are feeling nervous.
When you begin to speak, do so slowly and clearly to give your audience time to absorb your words. Remember to take full breaths between sentences.
Dealing with presentation nerves: Feeling anxious or being nervous before a big presentation is normal. If you feel nervous, focus on the fact that your audience wants you to succeed. They are on your side. You were chosen to speak and you are the expert they have come to hear. There’s no need to tell them that you are feeling nervous – people probably won’t even notice if you don’t mention it. Whenever you feel those first signs of nerves such as a racing heart, sweaty palms and shallow breathing, bring awareness to the physical sensations, take some deep breaths and anchor yourself by touching something physical, such as a table or the slide advancer, or push your weight into your toes and feet. It’s perfectly natural to feel nervous, but try to focus your attention away from your nervousness and concentrate instead on what you want to say to your audience. Recognize that nerves are a signal that this is something that matters to you. Turn your nerves into enthusiasm and passion for your topic.
STEP THREE: AFTER YOUR TALK
Spend time after the presentation to reflect on how things went. Ask yourself (or others) what you thought went well and what could have been better? Take some notes on which techniques worked to help calm your nerves, which stories resonated with the audience, and how you answered any questions in the Q&A. The purpose of this exercise is to become a better presenter the next time you are asked to give a talk, by putting the lessons you learn each time into practice. Take every opportunity you can to practise speaking in public. Not only is it an important way to get your message out into the world, but mastering the art of public speaking is a wonderful way to boost your personal and professional confidence.
Editor’s Note: For another creative presentation design tool, please check out Canva.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
Success means so much – its definition is reflective of the heart & soul of the perceived successor. To me – Success is not just about chasing a dream and securing it – true success is a lot deeper than pushing through a physical barrier to win the prize on the other side.
I believe true success is flying in the face of danger, marching towards the fire and leaning towards the negative perception that your efforts will reap nothing or your existence is un-important.
Success is proving that your hunch was right, your dream was correct and your gamble paid off – NOT because you put in resources to get back (something for yourself). But, rather you gave your all for the good of others, for the delivery of kindness, for love in the form of understanding and ultimately sacrificial leadership for the fulfilment of a need in your community. Success can take many years and in most cases it does. It’s a gradual slope of hard work and its rewards are up there – on top of the mountain.
Why do I believe this? I am a survivor of cancer x 3, medical negligence, a disability as a result and currently 77 doses of cancer treatments to keep me alive and very soon a bone marrow transplant. I’ve seen people lose their fight, right in front of me. I’ve heard people tell me to be quiet and stop fighting for the suffering of others. Success is being a survivor and that’s what I am!!
What do we need to be a survivor? What do you need to be a survivor? A very important element for me has been faith and foundation. My faith is everything and the family who love me, combined with my faith are my foundation. Without a strong foundation – we may topple and fall, either mentally or emotionally. However, many people find other elements of underpinning to keep them strong, through the largest hurricanes of life.
Even with these ropes of strength in our greatest storms, we may still topple – however a secure footing will help us find it easier to rebuild again and seek help when we need it. This may include a shoulder to cry on, someone to take us to medical appointments/assist with medication or someone to call a Psychiatrist. There is nothing wrong with asking for help, I believe it proves our strength and resolve.
Being a survivor takes a strong desire to continue no matter what, a resolve to not listen to the masses or those who do not support you – this may include family and friends. Believe it or not, when we have a difficult health journey, people walk away – even folk who should not or those we thought we could rely on. Some of us often discern these individuals, as they run for the hills and never return, yes – even those who are related to us.
We may not understand this behaviour at the time, but often the ones that run cannot cope with our journey (even if it’s a long-term success) and in the end, we may find that these relationships weren’t contributing to our health anyway. For myself personally – of course, there are days when physically I find my daily duties difficult to fulfil – these days, I discipline myself to know & practice when I need a little extra medication/a little extra rest and a little extra prayer, these things are what survival currently look like for me.
After my Bone Marrow Transplant, I will have less cancer pain and more resolve to survive in a different manner – I will continue forward and enjoy each day blessed and given to me. I will enjoy every day granted to me with the family and friends who love me and the ones that have stuck around – they are the ones we are surviving for. They are the people who value our survival – we may not realise how many people around us cherish our life and the energy we put into surviving, however, I know most of us have a good handful and many more supporters after that.
Treasure the people who cling to you and love your survival – you are worth more than all the gold and jewels, on our beautiful planet – your life and the days you have are more significant than you could ever know – just ask the people who love you.
https://powerfulpatients.org/pen/wp-content/uploads/Success-is-Being-a-Survivor.png600600Jodie Guerrerohttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngJodie Guerrero2014-11-21 09:52:292022-02-16 15:46:23Success is Being a Survivor
This is important! And often overlooked, neglected, procrastinated, or ignored…for many reasons. If you are an adult, you need to think about your future and your wishes and desires in terms of your health care. And you need to discuss these wishes and desires with those close to you. It is only by doing this that you can ensure that your choices will be heard.
It is sometimes a difficult conversation to start, but those around you and close to you need to hear you. Start by thinking about quality of life, choices, and what is important to YOU. Think about who you can trust to listen to you and carry out your wishes if you are no longer capable of doing so.
If you are a cancer patient, think about what treatment options are available to you, what makes sense to you and what doesn’t. Do your research, talk to your provider or medical team and talk to those close to you. Then think about those discussions and what is important to you.
This is ultimately an individual and very personal decision. However, family members need to hear and respect your viewpoint, so include them in the conversation early on.
So many times, it happens that when a patient is unconscious or incapacitated in some way, family members get together and try to make decisions. Often, the family members cannot agree on what the patient would have wanted and their opinions and emotions cause conflict, anger and heartbreak. And then, since the patient never made her wishes clear, they are not carried out.
You can avoid this.
Take action now and start the conversation.
Once you have discussed your wishes with family members and loved ones, it is important to fill out the correct paperwork. Medical directives are legal documents that will state your wishes and help to see that they are followed. But do not rely on medical directives alone. Be sure to talk to family members or others close to you.
According to a recent article in the New York Times, large national studies showed that although more patients are completing medical directives, these directives are not always available to hospital staff when they need to be. Patients often keep them filed at home and they do not find their way into patient medical records or into the hands of those caring for the patient in an emergency situation. Be sure and make your wishes know to those closest to you and give them a copy of your directives.
Advance Care Planning is also a process. You can change your mind and may do that as time progresses. Be sure and update family members as your wishes change.
You do not have to do this alone. There are numerous avenues of help.
Here, you can find information, a “starter kit” to help you get your thoughts together and start the conversation with your loved ones. This kit is available in Spanish, French and Mandarin as well as English.
There is also a PDF on how to have the conversation with your doctor, in Spanish and French as well as English. The website has a blog with patient stories and stories from staff members and advisors.
MD Anderson has an entire web page dedicated to Advance Care Planning . Specifically for cancer patients, this page was developed by an interdisciplinary team of doctors, patients, social workers, health educators and other health care professionals.
On this page, you will find step by step guidelines on how to start discussions with family members, talk with your provider, assign a family member to be your spokesperson and how to complete the legal paperwork necessary. PDFs are available in English and Spanish.
There is also a 5 part video series explaining the process of Advance Care Planning in depth with patient viewpoints and advice on how to make the decisions and discussions go as easily as possible.
The MD Anderson web page also includes information on Advance Medical Directive documents such as Living Wills, Power of Attorney and Out of Hospital DNRs (Do Not Resuscitate) with links to the legal documents and instructions and advice on filling them out.
This page is an excellent resource and also includes a number to call for further questions.
Don’t hesitate. Start the conversation now.
https://powerfulpatients.org/pen/wp-content/uploads/Bladder-Cancer-Care-Partner-First-Office-Visit-Planner.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2014-06-28 18:51:562022-10-25 16:44:37Advanced Care Planning – What to Do Now!