PC Whole Patient Support Archives
Prostate cancer can unleash a whirlwind of unexpected emotions and experiences for patients and care partners. You are more than just a patient; more than just a treatment plan.
Whether your concerns are physical, emotional, nutritional, or spiritual, we can help.
More resources for Prostate Cancer Whole Patient Support from Patient Empowerment Network.
What happens when someone close to you has been diagnosed with cancer?
How do you find the right words to say?
What is the best way to support them?
And how do you cope with your own emotions and feelings at the same time?
In this month’s article, I am sharing advice that comes directly from those who have personal experience of cancer – either as a patient themselves or as a friend or family member to someone with cancer. The following tips are some of the things that friends said and did that were most helpful to cancer patients at the time of diagnosis and treatment.
Firstly, acknowledge that this can be a hard time for you too
Hearing that a friend has been diagnosed with cancer may impact you in ways that you might not be prepared for. You may have many different emotions to cope with. You may feel angry, sad, and scared that this is happening to your friend. You may even find the news hard to take in and feel numb. Breast cancer survivor, Nicole McClean describes her feelings of numbness on hearing the news that her best friend was diagnosed with the same disease: “I didn’t know what to feel. I didn’t know what to say. Everything I had said to other people didn’t really apply because this was MY friend. Not a stranger that I was comforting. Not even myself that I had to give a pep talk to.”
But don’t make it about you
In the shock of hearing about a friend’s diagnosis, it can be tempting to slip into a place of dwelling on your own fears and anxieties. Nicole cautions others not to make this about themselves. “Please don’t be a friend like me. Don’t be the friend who makes the person with the diagnosis have to stop her own grieving to console you,” she says. “This is her moment. Her time to BE consoled. I don’t ever want her to feel like she needs to console me or comfort me during this time. That’s no longer her role. It is now mine.”
Just ask what’s needed
“My number one tip,” says radiation oncologist, Dr Matthew Katz (@subatomicdoc), is “just ask what you can do to help. It can be hard to predict and may vary at different times in the cancer experience.” Breast surgeon, Dr Deanna Attai (@DrAttai) agrees: “Ask the patient what do you need, ask if they just want some company to sit, listen and be present.”
Above all, advises author and advocate, Nancy Stordahl (@NancysPoint) “don’t try to be a fixer and please, avoid using platitudes. Don’t tell her she’s strong, brave or courageous. Don’t add to her burden by making her feel she must live up to some gold standard of “doing cancer right”. Let her be real. Witness her pain. Listen. Just be there.”
Listen, hear and do
“The steps to being a good friend and supporter are simple”, says Nicole, “Listen and do.” The first part is listening. “Listen to her. Or just sit with her silently. But either way, give her space where she’s comfortable sharing with you what’s in her heart without that moment becoming about you.“
John Moore (@john_chilmark), founder of Chilmark Research, echoes this when he says: “Listen, truly listen and they will open up in time to the fear they hold within – just how scary it can be at times.”
Julia, co-founder of online breast cancer support community @BCCWW agrees. “Listen and hear,” she advises, “if they have bad days let them, cancer isn’t fun times. Flip side: if they feel good, believe them.”
And it’s ok to not know what to say sometimes.
“Something that I think is helpful is for friends and family to remember that it’s okay if you don’t know what to say to the person with cancer,” explains Lisa Valentine (@HabitgratLisa), ·who blogs at habitualgratitude.com. “Show up, say “I don’t know what to say, but I am here for you.” Take it from there. Showing up and listening usually takes care of what can happen next.”
HER2 breast cancer patient, Tracy (@tracyintenbury) suggests offering to go to “chemo sessions if the person with cancer would otherwise be attending alone.” Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) appreciated those who attended medical appointments with her “especially during the first months when everything seemed to proceed at the pace of tar, and again during critical appointments/ chemo days.”
Do what needs to be done
“Don’t ask her what she needs, just do something that she needs,” recommends Nicole. “Show up, and help out.” Chair of Cardiomyopathy, CR UK patient board and NCRI rep for kidney and bladder cancer, Alison Fielding (@alisonfielding) agrees: “Make specific offers of help such as lifts, company or chores rather than waiting to be asked.”
“Anyone who said let me know if you need anything wasn’t going to get an answer,” explains Ilene “so during difficult times, one or two of my friends would do my wash, change the sheets and put the clothes away. She’d bring me smoothies while I’d be knocked out from my pre-taxol Benadryl and knew exactly what I’d like.”
Clinical Professor of Pathology, Dr David Grenache (@ClinChemDoc), cautions following through with offers of help. “From experience: when you tell them you will do what you can to help, then follow through with that when you are asked for help. You may have to drop a high priority task but when the call for help comes. Go!”
Victoria (@terrortoria), founder and community manager of @YBCN_UK (which supports young women with breast cancer), recalls a friend who “made home made soup for me when I told her I couldn’t bring myself to eat things. She left them on my doorstep as I couldn’t bring myself to see people either for a time. It was a 90-minute round trip for her. She’d listened to how I felt and then helped me within my limits.”
This theme of cooked meals comes up again and again.
“Cook meals so the person with cancer has something warm and nutritious,” recommends Tracy. Maureen Kenny (@MaureenKenny1), a patient living with secondary breast cancer, agrees, saying “you can never go wrong with a cooked meal.”
After a long day in hospital, breast cancer patient advocate, Siobhan Feeney (@BreastDense) recalls the day she came home to find “in the porch, cooked dinner, homemade bread, marmalade and fresh eggs.” A gift she says she’ll never forget.
Alleviating the pressure of cooking and housework is a super practical way to help a friend with cancer. Sarah Connor (@sacosw), shares a story about her neighbour who “came once a week, took away a basket of dirty clothes, brought them back washed, dried, ready to put away. She didn’t know me very well. Still makes me tingle.”
Give thoughtful gifts
From warm socks and soft blankets to body lotion and lip balm, there are many gifts you can bring a friend who is going through treatment. Beverly A. Zavaleta MD, author of Braving Chemo, writes: “Each time someone sent me a gift I felt a connectedness to the giver and to the “outside world,” which was a welcome escape from the cancer world that I was living in… when I received a gift, I appreciated the time that that person took to remember me, to think of what I might need and to choose, assemble or make the gift.”
Breast cancer survivor, Karen Murray (@murraykaren) recommends practical gifts like “hand cream (skin very dry after chemo), gel for mouth ulcers (also common), some nice sweets/fruit.”
Male breast cancer survivor, Dennis Keim (@denniskeim) suggests “a jar of Aquaphor might be a nice gift. Especially if their skin is getting hammered by chemo.”
“Help the cancer patient pamper themselves,” proposes Lisa Valentine. “You know your friend or family member well enough–get them something they wouldn’t get themselves because they would think it’s extravagant–i.e. the expensive chocolate or a pedicure.” What may seem like an indulgence can also be extremely practical. “Taking me for gel nails protected my ever softening nails,” explains Ilene Kaminsky.
Although be mindful that not everyone appreciates the same things.
“I wasn’t interested in toiletries, candles. Wine gums – they mask the taste of a nasty pre-chemo antiemetic,” says Syliva (@SylviaB_). “People often think buying flowers is naff. I adored it when people bought me flowers. A couple of people bought spectacular flowering plants.” Breast cancer blogger, Sheri received the fabulous gift of a monthly subscription to in-home flower deliveries during treatment.
Help with treatment decisions
If you have already been through cancer yourself, your friend may turn to you for treatment advice. You can guide them to helpful resources and share your own experience, but ultimately the final decision is theirs alone. Sometimes you may not agree about treatment decisions. This can be hard for both of you. Try to accept this and support their decision. “I think not being critical with someone’s choices is very important. Support should not be in spite of circumstances,” says Ilene Kaminsky.
Offer compassion and kindness
Two-times breast cancer survivor and patient advocate Terri Coutee believes the best gifts you can offer a friend is compassion and kindness. “Hold a hand if you are with a friend or loved one in person,” she advises. “You don’t even have to say anything. Perhaps your warm, human touch is enough. Tell them you have no idea how they are feeling at the moment but want to support them in any way you can. Be sensitive to the fact they may only need someone to listen, not advise.”
John Hanley (@ChemoCookery) considers “small practical actions and warm, soothing, short reassuring words are perfect.” Words like “I’m going nowhere and I’ll be here shoulder to shoulder when you need me. A little note/text/card “Here for you 24/7 anytime.”A HUG, an Embrace, a hand, eye contact.”
Sara Liyanage, author of Ticking Off Breast Cancer  reminds us that “a cancer diagnosis turns your world upside down and overnight you can become scared, emotional, vulnerable and anxious. Having friends and family step up and show kindness is a lifeline which can carry you through from diagnosis to the end of treatment (and importantly, beyond).”
Treat your friend like you normally would
Researcher, Caroline Lloyd (@TheGriefGeek), cautions us not to “make it all about the cancer, they are still a person.” Writer and metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle) agrees. “I prefer to keep conversation as normal as possible for my own sake – I don’t want cancer to take over my life.”
Stage 4 melanoma patient advocate, Kay Curtin (@kaycurtin1) suggests you talk to your friend “like you would any friend. We haven’t suddenly become aliens who require a different style of language,” she points out. Sherry Reynolds (@Cascadia), whose Mom is a 15-year metastatic breast cancer patient, talks about how her mother “really appreciated it when people talked to her about regular things vs always talking about her cancer or asking how she was doing. She was living with her cancer, it wasn’t who she is.”
Know when to back off
“What I didn’t want, which is equally important, was people trying to encourage me to go anywhere or do anything,” says Syliva (@SylviaB_).“ I spent a lot of time on my sofa and felt guilty saying no to people who wanted me to go out.”
Knowing when to be there for your friend, and when to give them space isn’t always easy. but it’s an important balancing act as a good friend. In Tips for Being A Great Cancer Friend, Steve Rubin, points out that “sometimes, the overstimulation from nurses popping in, PT sessions, and all the tests/drug schedules can become so exhausting that you just want to be left alone. Other times, the loneliness kicks in and you could really use a friendly face.”
It may take time to find the right balance, so let your friend guide you. Nicole McClean shares her experience with her friend: “I haven’t spoken to her a lot. I didn’t want to become that sort of pesky, well-intentioned friend who searched for every little thing that might show how she was feeling at any particular moment. Because I know that her feelings would change from moment to moment and sometimes… sometimes it’s just too much to have someone repeatedly ask you… “how are you really feeling?” even when you know they mean well. At this point, I am letting her guide me into how much she needs me and where she wants me to be.”
At the same time, Terri Coutee advises gentle persistence: “Don’t give up if you offer help and they don’t respond. Revisit your offer to do something for them with gentle persistence. One day they may decide they need your help,” she says. Maureen Kenny recalls “a friend who texted me every time she was about to go shopping to see if I needed/wanted anything while she was out. I rarely did but I always really appreciated her asking.”
Make your support ongoing
Support is not just one and done. In the shock and drama of a crisis, friends rally round, but once the shock has worn off many disappear. True friends stick around long after the initial days, weeks and months of a cancer diagnosis. Ilene asks that friends continue to“remember birthdays, cancerversaries, and remember me on holidays. A card means a lot even to just say hi.”
Many studies have found that cancer survivors with strong emotional support tend to better adjust to the changes cancer brings to their lives, have a more positive outlook, and often report a better quality of life. Research has shown that people with cancer need support from friends. You can make a big difference in the life of someone with cancer. 
“I personally loved just knowing I was cared for, says lobular breast cancer campaigner, Claire Turner (@ClaireTTweets). “A number of friends didn’t contact me or come and see me and that hurt, so simply be there in whatever way means something,” she advises.
“The truth is basic,” says Nicole McClean, “nobody wants somebody they love to go through cancer. Especially if they’ve been through it themselves. You want people you love to be spared this type of hardship. But you can’t protect them from it. You can only help them through it. Be there for them in the ways that they need.”
your help to what your friend needs and enjoys most is the best way to be a
friend to them. As four-times cancer survivor Sarah Dow (@he4dgirl)
points out “the answers will surely be as varied as we are, both in life
generally, our experience of cancer, and our connection with our friend.”
 Nicole McClean. My Fabulous Boobies.
 Beverly A. Zavaleta MD, The Best Gifts For Chemotherapy Patients
 Life After Why
 Terri Coutee, DiepCJourney
 Sara Liyanage, “What To Do (And What Not To Do) For Someone With Breast Cancer”
 Steve Rubin, The (Other) C Word
 American Cancer Society, “How to Be a Friend to Someone With Cancer”
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. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, 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.
The Alliance for Patient Access created a video to help you understand patient-centered care.
Suja Johnkutty Hi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life. betterrelaxation.com
Hi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life.
Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.
Top Tweets and Advice
Care Coordination Means Everyone Is Working Together
You Are Your Own Best Advocate
Work For What You Deserve
Dogs and humans have shared a special bond for over 12,000 years. Clinical research has shown that dogs increase quality of life, finding that those living alone with a dog have a 33% decreased risk of death. A study published by the Complementary Health Practice Review also found that pet owners are likely to have lower blood pressure, better cognitive function, and decreased anxiety than their non-pet owning counterparts. For those fighting along term or chronic illness, spending time with a dog can have broad health benefits for both the body and the mind.
A long term hospital stay is difficult for patients, particularly those in critical care units. Even physicians with exceptional bedside manner can only do so much to mitigate the clinical nature of a hospital room. A study published in Critical Care shows that animal therapy can help ICU patients overcome the mental health issues associated with an extended hospital stay. Bringing in a dog to engage with patients breaks up the monotony of the hospital, and improves mood. 74% of pet owners report improvements in mental health, showing that dogs lessen feelings of loneliness and isolation.
Dementia And Alzheimer’s
Patients in nursing homes go through many of the same problems as those battling in an ICU. Nursing homes pose a particularly great challenge for those with dementia and Alzheimers, as unfamiliar settings and faces can cause distress. A promising study published in the American Journal of Alzheimer’s Disease and Other Dementias shows that dementia patients enrolled in animal-assisted therapy had decreased levels of agitation and greater social interaction than a control group. Notably, many of the patients involved in the study had owned dogs in the past. A key part of treating dementia-type disorders is involving patients in activities that they have enjoyed over the course of their life. For animal lovers in nursing homes, playing with a dog for even a few hours a week can have a massive impact on their quality of life.
Exercise And Physical Fitness
Most dogs are seemingly boundless, furry balls of energy – particularly high energy, social breeds such as Black German Shepherds. Walking and playing with a high energy dog is necessary for their happiness, and comes with the obvious benefit of weight loss and a decreased chance of diabetes for people as well. The benefits of playing with a dog can be much broader than weight loss. Exercise is a vital part of physical rehabilitation, and has shown to cause remission of major depressive disorder on par with antidepressants in clinical trials. Coupled with the effort required to keep them healthy, a dog can give a person recovering from an illness a greater sense of purpose, which helps patients mentally as well as physically.
Registering a therapy dog requires a bit of work, but is a worthwhile vocation for both dog and owner. While medications and in-patient care are necessary for many illnesses, a visit from a dog can help make the arduous process of getting healthy a little less taxing and far more rewarding.
Music has always been a universal language with the power to heal, restore and challenge an individual. The history of music dates back to the beginning of civilization and music therapy came along a few thousand years later. Music therapy first became popular in the late 1940s, a few years after World War 2 and the beginning of what we now call “The Hippie Movement”. It has been proven to help patients self-sooth, reduce muscle tension, decrease anxiety while increasing self-awareness and self-confidence, increasing verbalization and the patient’s overall view of themselves and their future. In today’s world, there are many stories of how music has helped patients through their recovery period who suffered from a mental or physical illness.
Music Therapy and Mental Illness
One in five adults in the US suffer from mental illness in a given year, which is approximately 43.8 million Americans. Despite such a large percentage of Americans who suffer from mental illness there hasn’t been much progress in effectively treating the root cause instead of only the symptoms. Music therapy bridges the gap between medication and alternative therapy. The Nordoff-Robins approach to music therapy focuses on helping patients with autism, mental disorder, and emotional disturbances to increase their interaction with others while decreasing harmful tendencies and triggers.
Follow the Music
A recent study in 2017 discussed the methods in which music therapy helped to improve the emotional and rational tendencies of people with schizophrenia. The study went on to discuss the benefits of music therapy for other mental disorders like depression and anxiety. There is now a close correlation to an improvement in social and emotional skills to the various types of music therapy available for treatment. Mental Illness advocates and patients alike have supported the growth and progress of some of the largest music concerts all over the world. These moments of music appreciation has established a greater understanding of the healing power of music.
Music Therapy works due to the release of dopamine in the brain causing you to feel a sense of reward thus increasing your mood and desire to engage with others. A randomized controlled study in 2008 on Music Therapy for Depression indicated the potential for music therapy to lower symptoms of depression while improving overall mood. Further studies in 2016 supported this claim and extended it to anxiety disorders and some personality disorders as well. Results show that patients who have been exposed to several sessions of music therapy showed a significant improvement with coping skills and their overall self-image.
Beyond the Study
Music therapy has long proven its ability to reduce the symptoms of certain mental illnesses like depression, schizophrenia, personality disorders and many more. Future studies hope to acquire more diverse data samples and cross-analysis them with studies on introducing music to children in negative environments. These studies hope to prove and expand the understanding of how music is able to alleviate certain symptoms in the brain.
Data from over 20,000 people with cancer found that one in ten patients were also affected by depression. Helping patients to deal with both the physical and psychological side effects of living with and recovering from cancer needs to be a necessary part of their treatment. Many studies have found that art therapy is a great way to help cancer patients deal with how they’re feeling, including reducing depressive symptoms and physical pain, while improving their outlook on the future and making them feel listened to.
Art therapy helps to reduce pain and depression
Many studies have looked into the positive effects art therapy has on mental health in cancer patients. 1,500 participants were involved in research by the National Institutes of Health and they found a very clear link. Art therapy helped to reduce anxiety, depression and physical pain in patients, and most patients also reported a general improvement in their quality of life. The research suggested that the emotional benefits lasted as long as the therapy, but a reduction in pain was seen in patients afterwards too. However, another study found that the improvements in anxiety and depression symptoms were long-term.
Art therapy without a professional
Unfortunately, not everyone gets the opportunity to work with a professional art therapist when they’re living with cancer or they wish to continue once they’re home. People can still benefit from the effects as it’s easy to do at home by yourself. Art therapy will vary depending on the individual’s preferences as some people prefer to make or listen to music, others like to draw, paint or write, and some like to make things, like sculptures. It really doesn’t matter which art medium is chosen as the person will still be expressing themselves. For example, drawing a person’s face can be therapeutic as it can help to think of a loved one, or it can be symbolic as the facial expressions can illustrate emotions that may be difficult to discuss.
Benefits during chemotherapy and radiation treatment
Art therapy has been found to be useful during chemotherapy in three main different ways. One study found that art therapy was a relaxing and creative outlet, patients felt they were listened to more and they had a way of expressing their emotions and the opportunity to find meaning in their life. Another study looked at how women receiving radiation treatment for breast cancer could benefit from art therapy. Their overall health improved, along with their quality of life, physical health and psychological health.They also had a better body image, coping with physical side effects from treatment improved and they felt hopeful about the future.
Art therapy has the potential to be a powerful tool for helping people to live and deal with cancer, both physically and psychologically. It’s worth discussing medical professionals involved in your treatment about the option of art therapy to see what they can offer, but you can always start your own creative projects at home to help you heal.
Treating cancer often involves treating multiple symptoms, both physical and emotional. The symptom of pain, however, has been highlighted as one of the most critical due to the effect it can have on recovery and overall mental well-being. Pain is seen in approximately 25% of newly diagnosed patients, 33% of those having active treatment and up to 75% of those with advanced disease according to The American Pain Society. The World Health Organization have also identified cancer pain to be a global health concern, and also mention that a large percentage of patients are not adequately treated for pain.
While the normal regimes of medication treatments are usually prescribed by a variety of healthcare professionals, some elements of the pain or personal circumstances can be overlooked. In some cases the clinical approach doesn’t always work, leading many patients to look for alternative or holistic approaches to managing their pain.
Acupuncture, Reflexology and Art Therapy
Known as a physical therapy, medical acupuncture is an evidence-based medicine. It involves inserting sterile needles into certain points in the body which then stimulates the nerve to release natural chemicals which in turn give you a feeling of well being. Acupuncture, used alongside established drug therapy, has been shown to be most effective.
Reflexology is a type of massage that focuses on applying pressure to the hands and feet. There is no scientific evidence to support its use, but many people have reported positive outcomes in managing their pain. The belief is that having your feet and hands massaged in a specific way stimulates certain organs in the body which allows for the natural release of the body’s healing process and energy pathways – similar to the way acupuncture works.
Art therapy is a type of mental therapy that helps channel your focus away from the pain itself. “Art therapy does not replace the need for pain medication, but it can be used as an effective complement and reduce perceptions of pain experiences,” says Kelsey A. Skerpan, an art therapist with Harvard-affiliated Massachusetts General Hospital.
Furthermore, a study done in early 2018 and published inThe Arts in Psychotherapy looked at approximately 200 people who had been hospitalized for pain and found that just 50 minutes of art therapy significantly increased moods and lowered levels of pain.
The Benefits of Exercise
Depending on the stage of cancer you’re at and the treatment you’re having, exercise may be an option to help with chronic pain. Exercise regimes can be specifically tailored depending on your personal circumstances. Studies have shown that aerobic exercises like running, walking, cycling and swimming can have a positive influence on the way individuals react to their pain, resulting in effective pain management in the long-term.
The Importance of Sleep
Sleeping is the body’s natural way to rejuvenate and heal. If you’re living with chronic pain due to your cancer, a good night’s sleep may be difficult to achieve. Some medicines used in the treatment of cancer can also affect your sleep. To help get a better night’s sleep, try and be active during the day, avoid caffeine and carbonated drinks at night or sleep on a special mattress that curves to the shape of your body.
Pain can be difficult to manage if you have cancer. Speak openly and honestly about your symptoms with your doctor or nurse. If you’re planning on trying any therapies or alternative ways of managing your pain, always check with your healthcare team first.
Accessing Information and Support
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 firstname.lastname@example.org, 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.
Certified Yoga Therapist Raquel Jex Forsgren shares a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.
You can check out more of Raquel’s videos on her YouTube channel, Yoga With Raquel.
So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that. And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.
Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels. Just feel the body itself. Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way. Don’t analyze it. Don’t go into any thinking other than just noticing.
Begin to expand your muscles in your ribs as you take your next inhale. Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales. And I want you to bring to mind one thing you’re really grateful for today. One thing. The next before we move on, bring to mind a goal, an intention. It could be how you want to feel for the rest of the day, emotionally or physically. How do you want to feel or what do you need? Beautiful.
Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together. We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.
So as you inhale just open your arms like an (? cast) or goal post. And you’ll need to adjust this. If you have had surgery along the central plate, take it nice and easy, just open, inhaling. As you exhale bring your arms together, touching your palms together, elbows and forearms. Inhale, open the arms again. Exhale, closing the arms together. Just take two more only moving with your own breath. And closing. One more time just like that, beautifully opening and relaxing. And releasing the palms back down on your hands.
Close your eyes one more time. I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted. I just want you to notice. And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done. It’s published in the literature.
It’s called alternate nostril breathing. You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off. So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time. And I want you to breathe normally and naturally, okay. So this isn’t anything forced.
Close off the right nostril first, and just delicately push it. You don’t have to push it clear into your nose. Just delicately push it. Exhale all the way out the left side of the nostril. Then inhale through the left nostril, exhale out the right nostril. Inhale through the right nostril, exhale out the right nostril. We’re going to do three more of these. Inhale through the left, exhale out the right. Inhale through the right and exhale a little longer out the left. One last time. Inhale through the left and exhale longer out the right side.
Bring your hands back down to your lap and close your eyes again. Take a nice normal, natural breath. And I want you to notice what’s different in your breathing, if anything. Just notice it. Notice your heart beating. Come back to that intention or that goal you set for yourself. And softly blink open your eyes with a smile. I’m expecting all of you watching to be smiling even though I can’t see you. And Namaste.
MedHelp is an online health community that uses technology, data science, and expertise in consumer health behavior to deliver outcomes at mass scale. They help guide people through every step of their health journey and helps them achieve the results they seek.
With MedHelp, you are able to achieve the following:
- Connect with others just like you to get advice and share your experiences
- Track your health condition and easily share data with doctors and caregivers
- Learn from people who have your condition by reading articles and blogs.
- Ask questions from doctors via a Q&A forum
Imagine a world where music is prescribed as medicine – HealthTunes calls this MusicMedicine – and your music prescription is just a click away.
HealthTunes is the only publicly available online streaming audio service created to improve your physical and mental health by pairing credible medical research with active music links.
Walter Werzowa (a musician, composer, sound inventor, and music producer) founded HealthTunes after learning his son was diagnosed with a rare medical condition. After visiting numerous physicians who recommended surgical treatment, Walter and his wife, Evelyne, decided to have their son listen to music inlaid with binaural beats and isochronic tones. Physicians saw a drastic improvement in his condition and began requesting more information from Walter and Evelyne on how they accomplished such a feat.
Subsequently, Walter decided to share his knowledge of the healing power of music and created the API for HealthTunes in the hopes of assisting others who suffer from complex medical conditions.
HealthTunes’ MusicMedicine regulates the autonomic nervous system and accelerates endogenous processes. Binaural beats, which are the result of two slightly different frequencies, create a third signal in the brain. Coupled with music, binaural beats restore and balance a patient’s physiology.
The goal is to allow everyone access to credible medical research explaining the benefits of the music they listen to. Thus, HealthTunes provides all users access to medical research from knowledgeable institutions as well as music therapy all in one place.
To use HealthTunes, simply go to the website, sign up, and music therapy is at your fingertips. Therapies can be listened to anytime, anywhere internet access is available and no credit card information is necessary. All therapies were created by music composers with medical research in mind to treat specific ailments.
Chemotherapy is very important in fighting cancer but can have unpleasant side effects. HealthTunes music has been shown to relieve chemotherapy symptoms in patients both during and after undergoing treatment.
Therapy for anxiety, depression, stress, as well as numerous other ailments is offered on the HealthTunes site. Chronic pain patients recorded 30 percent less pain perception after undergoing music therapy.
Walter strives to lessen the cost of medical care; therefore, the service is free to all patients. Donations, however, are accepted and greatly appreciated.
UCLA Medical Center Nephrology Department and UCLA Center for East-West Medicine endorse HealthTunes.
HealthTunes’ wish is to help you conquer obstacles you’re faced with while providing you with music therapy you can truly benefit from.
People with cancer can stand to benefit from the many positive effects of indulging in swimming. It is one of the top 10 favorite physical activities according to the 2013 Recreation Survey. Swimming for fitness also grew in popularity, jumping to 2nd place behind walking according to PHIT America. It not only keeps you in a good shape but also offers many advantages empowering patients with cancer. From acquiring survival skills to enjoying the soothing effects of the water, swimming is a form of physical and recreational activity that provides immense advantages to everyone.
Swimming is An Empowering Exercise
There’s probably nothing better than swimming. Often dubbed as the perfect workout, it is a less weight-bearing form of exercise supporting your body in the water. It enhances muscle strength, improves endurance and keeps you in a good shape. In addition, research studies show that swimming has positive effects on the mental health. It improves moods, relaxes and calms the body.
For patients affected by cancer, swimming is a physical activity that offers benefits during and after treatment. Studies also show that even those with advanced stage cancer can take advantage of the gains offered by the activity. It helps combat the side effects of the disease by decreasing the intensity of symptoms such as pain, fatigue, and peripheral neuropathy. Through physical activity, people with cancer can relax relieving stress and reducing depression caused by the illness. Quality of life is, therefore, improved through physical activity such as swimming.
A Skill with A Lifetime Value
Swimming not only provides physical and mental advantages to cancer patients, it is also a skill that you can use throughout your lifetime. It equips you with the ability to judge situations in the water, find the best solutions and cope with challenges. Although over half of Americans or 56% know how to swim according to the Red Cross Society, the ability to swim is not merely judged by being able to tread or putting your head above the water. It is also the skill to find a way out of dangerous situations and preserve your life. Swimming teaches you how to stay safe in the water. Moreover, the physical activity enables you to know how to rescue others who are in trouble safely. It also trains you how to overcome any fear that you may have such as being in or near to water and even drowning.
For patients who are going through the cancer disease, swimming is a great form of exercise that offers physical and mental benefits. It helps in decreasing the uncomfortable symptoms of cancer and assists in improving overall wellbeing. Above all, it is a life skill that can save your life and that of others.