PEN Blog Archives

#patientchat Highlights – Looking Back on 2021 and Ahead to 2022

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Last week we hosted a “Looking Back on 2021 and Ahead to 2022” #patientchat. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Which healthcare trends were important to you in 2021? What trends would you like to see gain momentum?

A Year in Review #patientchat Highlights

Which healthcare trends were important to you in 2021? What trends would you like to see gain momentum?

A Year in Review #patientchat Highlights

 

Full Transcript

The Benefits of Exercise for Cancer Patients

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Most people know that exercise is good for them. It has physical and mental benefits no matter your age, current activity level, or the condition of your health.

For cancer patients, however, exercise may be even more beneficial.

When done properly and in moderation, exercise can help with your emotions, your physical state, and your mental health whether you’ve recently been diagnosed or you’re in the thick of treatment. Even if you’ve just finished your treatment, exercising can help with your recovery in ways you may not expect.

If you haven’t been exercising regularly, it could end up being your secret weapon1 to fight back against cancer and start feeling more like yourself. Let’s cover a few of the important benefits you can expect as you get physical.

It Boosts Your Mental Health

Studies have shown that 1 in 3 people experience mental health issues when they’re dealing with cancer. It’s easy to feel depressed, anxious, or stressed after receiving a diagnosis and going through treatment.

While seeking professional help for any mental health condition is important, there are also things you can do on your own to manage your symptoms daily, including:

  • Meditation
  • Mindfulness
  • Journaling
  • Self-care
  • Leaning on your support system

Exercising is another great way to boost your mental health and your mood2  each day. It lowers stress, boosts your energy, helps you sleep better, and can even improve your self-esteem – something many cancer patients struggle with.

Staying physically active can also help to regulate your hormones. What does that have to do with your mental health?

When you’re stressed, your body produces more of the “stress hormone” called cortisol. That can cause you to feel more anxious. Your treatments, including chemotherapy, can also impact your hormones and put you at a greater risk for mental health struggles. Even getting in a few minutes of activity each day can combat those hormonal shifts.

It Can Make Treatment Easier

There’s no denying that cancer treatment is difficult. Grueling. Hard to get through at times.

While a tough treatment is needed for a tough illness, some of the complications of chemotherapy can include everything from fatigue and hair loss to infection, nausea, and anemia.

Exercising throughout your treatment can help in a variety of ways.

First, if your treatment is making you feel sick, exercise can help you feel less nauseous and fatigued, making it easier to get through each day. Those are often two of the biggest complaints from chemo patients, so finding any small thing that can help with those symptoms is a big deal.

It also makes it easier to take care of your body every day, warding off other illnesses and keeping you strong throughout treatment. One big benefit is how much physical activity helps with deep vein thrombosis (DVT). Cancer patients are often at a greater risk of developing blood clots. That can be dangerous and usually requires immediate medical attention.

Exercising reduces that risk and helps to improve blood circulation. If you have to sit for most of the day for work, travel, or even at home, a little bit of exercise can go a long way to help prevent DVT.

There will be some days where you feel like you can’t do much as you’re receiving treatment. That’s understandable. Don’t push yourself too far and only do exercises that are approved by your doctor. Everything from stretching and yoga to walking, cycling, and swimming are great options.

On those days when you have a bit more energy and strength, make it a point to get active doing something you enjoy. Your mind and body will thank you, and you’ll be stronger, in the long run.

The Long-Term Benefits

If you’ve officially beaten cancer and you’ve completed your last round of chemo, it’s certainly okay to give yourself a break! Give your body time to relax and repair – you’ve earned it. But, make exercise a priority as soon as you feel up to it. Staying physically active can help you to stay strong and get back to feeling like yourself quickly.

Some of the long-term benefits4 you can expect from exercising include:

  • Boosted immune system to fight off infections3
  • Improved bone and muscle mass
  • Better heart and lung function
  • Reduced morbidity from other co-existing illnesses

Even when you’re cancer-free, exercise should be a regular part of your life. You might even find that you enjoy it so much that you start to do more. It’s a wonderful way to increase your strength and prove to yourself that you can do anything.

Beating cancer is no small feat. If you can do that, you can do anything. Run a marathon, try to lift a goal weight, or take a chance on a dance class you never would’ve tried before. Exercise is a great way to challenge yourself and take full advantage of the next chapter of your life.

The best part? The benefits will never stop.

Sources

  1. Your secret weapon during cancer treatment? Exercise!
  2. The Mental Health Benefits of Exercise
  3. 5 Ways to Boost Your Immune System – G&G Fitness Equipment
  4. Cancer & Benefits of Exercise | Cancer Foundation for Life

MPN Hero: Jeff Bushnell

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The Patient Empowerment Network (PEN) is proud to congratulate and honor our dedicated and passionate Network Manager Jeff Bushnell, who is being recognized as an outstanding patient advocate. Jeff’s passion and enthusiasm for helping patients and caregivers navigate their cancer journeys exemplifies PEN’s mission of fortifying cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcomes. We are proud of our growing team of Network Managers and grateful for their engagement in the PEN community.

 Jeff Bushnell, recognized for his advocacy through the PEN Network Manager program, has been named a Voices of MPN 2021 MPN Hero. The MPN Hero award is given to those who have demonstrated a strong commitment to making a difference in the lives of people with myeloproliferative neoplasms (MPNs). Jeff, whose wife Summer is living with myelofibrosis (MF), has accompanied and supported Summer on her MPN journey and has helped thousands of patients through the Network Manager Program. Jeff and Summer  serve as a duo of Network Managers who reach out to patients in the MPN community through e-newsletters, program development, and support groups. Jeff makes connections to others through advocacy and humor presented via videos.

“My goal is to help the caregiver and the patient understand that the caregiver’s a significant portion of the team. We thought we’d try to tell our story to anybody who was listening. We make videos every month about different things. We try to make them informative and humorous and little stories, telling about the challenges that myelofibrosis presents. I’m trying to get the word across that it’s important to support these folks that have myelofibrosis. You have to listen to your patient. What does that person need? Some need significant physical help. Others just need reassurance, emotional reassurance. But at the same time the patient needs to ensure that the caregiver is taken care of and has their time. Summer gives me the time to pursue my photography interests. She understands that I’m recharged when I go to these natural places. I never thought of what I was doing as anything other than what needed to be done. Because I think if you’re involved with somebody you care about that you should do the best you can to support them.” – Quoted from  Jeff’s Voices of MPN Hero Award. See full video here:

 The PEN Network Manager program is a volunteer group of patient empowerment ambassadors from around the U.S. Designed to further enhance health literacy, the program was launched in March 2020 and has grown exponentially. The volunteers engage with PEN’s network of cancer patients and families with the goal of providing support and navigation on their path to empowerment. Learn how you can get involved here.

 

Care Partner Profile: Mike Crocker

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The first time Mike Crocker became a care partner was in 2016 when his wife Dr. Gerri Smoluk was diagnosed with Acute Myeloid Leukemia (AML). The second time was in 2020 when, after being in remission for four years, Gerri was diagnosed with leukemia again. The two experiences couldn’t have been more different, says Mike.

Gerri’s first diagnosis came shortly after she started a new job. Gerri, who had a PhD in biochemistry, worked in the pharmaceutical industry. She was feeling tired a lot, but she was brushing it off, blaming it on the stress that comes with a new job. However, Mike urged her to see a doctor, so Gerri had a coworker, who was also a doctor, check her out. The coworker sent Gerri directly to the emergency room. She was admitted and was in the hospital for 45 days undergoing chemotherapy. “She had a very severe case,” says Mike.

It was overwhelming to say the least, but Mike quickly took on the role of caregiver. He soon realized that the simple things were the most helpful. Mike made sure to bring Gerri some of the comforts of home. He made sure she had t-shirts and sweatshirts to wear instead of hospital gowns. He brought Gerri her laptop and yarn for crocheting. He brought her the few foods that she could actually taste after the chemo wiped out her taste buds. Mike was also her sounding board. He listened as she talked through her care options and how they would affect her quality of life. He was simply there for her, walking with her daily so she could get some exercise and maintain circulation, so she didn’t have to stay in bed with the compression sleeves on her legs. “I did all the little things that could help her be a little more in control and have as close to a normal day as possible,” says Mike adding that Gerri’s background in biochemistry and the pharmaceutical industry gave her unique insight into her care. “She started charting her tests and data so she could be a part of the solution and have informed discussions with doctors. She wanted details and wanted to know what to expect.”

Mike and Gerri learned that patients and care partners are given overwhelming amounts of information and that they have the responsibility of learning all they can and asking questions and making decisions. He says that doctors aren’t always keeping up with the latest research and that it is easy for them to get stuck in routine treatments. He found that doctors talk about options based on their experience and their skill set, but that doesn’t mean that approach is best for the patient. He says that being comfortable with the doctor and getting a second opinion if wanted are also important. He and Gerri learned to be active participants in her treatment and care.

In addition, Mike and Gerri were always looking ahead and focusing on the future. He concentrated on keeping her spirits up. When she was bald from chemo Gerri was looking at wigs and Mike says he encouraged her to go wild and get a bright red wig. “She didn’t go for it but being outrageous and adding humor to the moment was a way for me to help,” he says.

It was while she was in her fourth year of remission that Gerri found Patient Empowerment Network (PEN). “Gerri liked PEN’s focus on making the information understandable for patients, giving them easy-to-digest information to make decisions,” says Mike. Gerri jumped right in and helped to develop the Network Manager program which launched in March 2020. The program is made up of volunteers around the country who use their own patient experience to support patients and their care partners through their own cancer journey and on to a path to empowerment. “PEN is very important because it is patient-focused,” Mike says, and that’s why PEN appealed to Gerri. She liked that she could use her scientific background to help patients understand the information and to make sensible decisions for themselves. Gerri served as the AML Network Manager and was named a finalist for the 2020 Reuters Patient Champion Award in the Patient Advocate category.

Then in July 2020, Gerri got her second diagnosis. She celebrated her birthday July 7 and a week later, Gerri was back in the hospital. “This time she had a second type of leukemia which threw doctors for a loop,” says Mike. “Usually when leukemia patients relapse, it’s with the same type of leukemia.”

Although they had been through a leukemia diagnosis before, this experience was nothing like the first. “It was very different. It was during covid so of course, unlike before, when she could have friends drop in, she no longer could have visitors. Everything was more restrictive with covid,” says Mike. “At least I could be there every day.”

This time, Gerri and Mike were not expecting a longer hospital stay. They were expecting outpatient treatment that would be easier, and they were looking forward to time away from the hospital. The first time was so scary, but this time they were experienced, and they knew what to expect, but what they expected is not what happened.

After about a week Gerri got worse. Doctors were trying to figure out what was wrong, but they were unable to save her. Gerri died July 27, 2020. The autopsy revealed she had an antibiotic resistant bacterial infection.

More than a year later, Mike says he’s doing okay. “Everyone handles it differently,” he says. “You have to give yourself permission to not be happy and also give yourself permission to keep going and find other things to fill the hole.” In September 2021, he retired from his career as a web project manager, and recently he reached out to PEN looking for a way to use his skills to help others. “Gerri was the driver, so now I’ve been drifting,” he says. “That’s why I contacted PEN. I wanted to do something of value.”

Mike will be an invaluable addition to the PEN network of volunteers.

Managing Medical Mistrust: Creating a Healthy, Trust-Based System

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If there’s anything “positive” that has come out of the pandemic, it’s that it has brought to light the many disparities that are still prevalent in healthcare. These have translated into disparities in the Covid world based on where people live, their education level and income, and their race, among others.

The same can be said about oncology specifically. Health disparities in the diagnosis and management of cancer can be described as being “higher cancer death rates, less frequent use of proven screening tests, and higher rates of advanced cancer diagnoses.” This was (and still is in some areas) exacerbated by the pandemic, where patients either opted to delay treatment or were told they couldn’t undergo treatment because of the surge of Covid patients in clinics and hospitals. Additionally, there have been delays in patients undergoing screenings for cancers, including colon, cervical, and breast cancers, especially among those of racial and ethnic groups, who already had a decreasing level of access to healthcare services at the beginning of the pandemic.

Undoubtedly, this has increased the level of mistrust in the healthcare system. How are patients supposed to get the care they need? How do providers increase their level of trust with their patients who are already at a disadvantage and have a greater risk of becoming infected with Covid or any other disease? Below are ways the healthcare system can bring patients and providers together to create a healthy, trust-based system:

Providers should:

  • Establish empathy and understanding of patients’ needs and values (and reiterate them back to the patient)
  • Offer different treatment options, if available. Be willing to discuss the pros and cons of each option, including recommendations
  • Discuss clinical trials as a treatment option, if applicable. Yes, healthcare is a business, but instead of a provider seeing it as “giving up” a patient, understanding that the patient’s health and well-being comes first is much more important
  • Work with the patient’s insurance, if necessary, for prior-authorizations on medications and procedures
  • Be honest with your patients. Gauge and/or ask about the amount of information they can handle when providing a diagnosis
  • Tell a patient if they don’t know something and/or if errors have been made. Being vulnerable and transparent in this regard demonstrates that you’re human

Patients should:

  • Be respectful of the physician’s (and other patients’) time during each appointment by bringing in a list of questions that need to be answered
  • Utilize patient portals!
  • Ask questions if unsure of anything spoken about during an appointment, especially medications
  • Be your own advocate when discussing your health (i.e. bring up why certain solutions are important to you)
  • Understand there are multiple patients being taken care of and no one patient’s needs are more or less important than another

Questions to Ask Your Doctor About Essential Myeloma Testing

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Questions to Ask Your Doctor About Essential Myeloma Testing from Patient Empowerment Network on Vimeo.

Being empowered to speak up about your myeloma care is not only important but essential. Dr. Saad Usmani, a myeloma expert, shares advice for partnering with your doctor and provides key questions to ask about myeloma test results.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

See More From INSIST! Myeloma

Related Programs:

How Does Essential Testing Affect Myeloma Care and Treatment (1)

How Does Essential Testing Affect Myeloma Care and Treatment? 

 How Is Minimal Residual Disease (MRD) Testing Used in Myeloma Care_

How Is Minimal Residual Disease (MRD) Testing Used in Myeloma Care? 

 What Should You Ask Your Doctor About Myeloma Testing_

What Should You Ask Your Doctor About Myeloma Testing?

Transcript:

Katherine Banwell:

If patients are concerned about voicing their concerns and I think many of us are, why should they feel like they’re a partner in their care?

Dr. Usmani:

Well, that’s the only way that they will feel empowered. And we have to remember why we’re doing this, right? So, we’re doing this so that we can alleviate the burden of this disease from our patients and give them as good of quality of life as possible. And it’s a partnership. And in that partnership, the patient is the most important partner. Everyone else – it’s like you’re the main character.

The patient’s the main character in the movie. And all of us are supporting cast around them. I think that’s how you have to approach it. That’s how – that’s why it’s very important. And of course, patients – we’re not expecting our patients to read the papers and be knowledgeable about everything. But have a general sense of what to expect and it will be – so, having a more educated patient helps them deal with treatments better and have realistic expectations of what’s to come.

Katherine Banwell:

Right. As I mentioned at the start of this program, Dr. Usmani, patients should insist on essential myeloma testing prior to choosing a treatment. As we conclude, I think it’s important to point out that some patients may not know if that can even receive these important tests. So, what key question should they ask their physician about them?

Dr. Usmani:

So, you should be asking your physician about what kind of myeloma you have? What stage of myeloma you have? How much involvement in the bones you have? Do you have any chromosome abnormalities or any features of disease that put you at a higher chance of the myeloma coming back?

As you ask these questions, your physician will be prompted to think about “Okay. Am I missing something in my work?” And you can always ask is there anything else you need to do in terms of testing to give you a better idea of how best to approach my treatment and follow-up. 

How an MPN Patient Resumes Exercise After Time-off

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How an MPN Patient Resumes Exercise After Time-off from Patient Empowerment Network on Vimeo.

MPN Network Managers Summer and Jeff talk about Summer’s journey to resuming exercise after a shingles diagnosis.

Summer believes exercise is important and strongly helps with her myelofibrosis. She currently does a daily Zumba session and is working her way back up to 10,000 daily steps.

We would encourage you to continue and be as active as your disease allows you to be.

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

Hi, I’m Summer.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network, here to talk to you about…

Summer:

Resuming activity after you’ve been laid up and haven’t been active for a while.

Jeff:

How many steps did you get, Summer?

Summer:

8,000. Only 2,000 more to go, so yay!

Jeff:

That’ll be great. Summer’s always been really an exercise addict. She really, truly, she’s tries to get 10,000 steps a day. She does Zoomba for an hour and she really tries to get a lot of exercise. She believes that’s really helped her with her myelofibrosis, but then something happened.

Summer:

Yeah, about the middle of June I got shingles even though I had the vaccine and shingles really made me exhausted. Really affects the nerves, it was horrible. So, I got really out of shape. I was just doing exercises laying down, mainly. So now that I am recovered, I’m trying to get back in shape.

Jeff:

And how are you doing that?

Summer:

Well I started out trying to do 30 minutes of Zoomba on my exercise tape, and that was only a couple of days ago, so I’ve gotten up to 50 minutes today. And I’m trying to get a total of 10,000 steps. When I get that goal, I’ll be back where I was before.

Jeff:

And how do…what are you working your way up to it, dear? What’s happening?

Summer:

Yeah, so many steps a day and today I got 8,000. But part of it, this helps your exercise a lot. I hadn’t been clothes shopping in those two months, so we went shopping today and I bought something to wear to a birthday party. So, that kind of renewed me and gave me energy to walk through the mall.

Jeff:

So how many steps did you get in the mall, do you think?

Summer:

I don’t know. I have now, like I said, I have 8,000 total, so I don’t know maybe I got 2 or 3 thousand in the mall.

Jeff:

So, we would encourage you to continue and be as active as your disease allows you to be. It’s sometimes a struggle. You may only be able to walk just around the block, but it’s really important and Summer knows how important it is. And, it’s been a real struggle getting back to where you were. Is that correct?

Summer:

You’re correct. That was the worst thing in my life.

Jeff:

So, that’s our advice to you for this short bit of advice is stay active to the very best of your ability.

Summer:

Right. Well, we better get back to walking.

Jeff:

We have 2,000 more steps to go. Yep. Well that’s our advice for today. Till next time, I’m Jeff.

Summer:

I’m Summer.

Jeff:

Bye.

Summer:

Bye.

CLL Patient Profile: Allan Rosenthal

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When Allan Rosenthal shares the story of his chronic lymphocytic leukemia (CLL) journey, you can tell that he didn’t let the word cancer hold him back. Affectionately known as “Dr. Pickleball” by friends and colleagues, he led an active lifestyle when he was diagnosed and continues to live an incredibly active life with CLL. Right before he was diagnosed in 2018, Allan noticed when he was playing doubles tennis with some men younger than him, he just couldn’t keep up with them. This unusual experience of a lack of energy spurred him to see his primary care doctor. Yet his diagnosis wasn’t a typical diagnosis – far from it. He works as a podiatrist, and his internist helped him to decipher the diagnosis.

After a laboratory blood test came back, it was revealed that Allan’s white blood cell count was elevated. His primary care doctor actually misdiagnosed his symptoms as an infection and put him on a round of antibiotics. And after his usual internist returned from vacation, he thought right away that Allan had CLL and sent him to see a hematologist/oncologist. As Allan remembers, “My doctor said, ‘You’re not going to die from this. You’re going to do the watch and wait or watch and worry.’”

Like many cancer patients, Allan’s diagnosis brought concerns beyond his health. “I was worried about the financial burden. Through organizations like PEN, my oncology unit, and the social workers at my hospital I have received help.” A nurse from the pharmaceutical company also calls him every month or two to just check to see how he’s doing in terms of both physical and financial concerns.

As a physician, he’s well aware of patients’ ambiguity with their care, and it’s always good to gain knowledge. Allan has recommendations for other patients, “It’s good to have someone with you at appointments. My wife is a nurse practitioner and is also a former oncology nurse, but it’s still tough to keep up with all the improvements going on in the field of CLL.”

Allan was diagnosed in the spring and was fine until later on that summer. The lymph nodes in his neck started to swell, and he went to his oncologist who informed him about the medication ibrutinib (Imbruvica). Allan says of starting his CLL treatment, “I remember taking the medication on a Friday and then going to play golf the next day with a friend. Pretty quickly I had the energy I used to have. Now I play pickleball, golf, platform tennis in the winter, and I ski. I just bought a Peloton bike during the pandemic that’s really helped me. I have no side effects from the medication. I’m living my life.”

As for his CLL treatment, he thinks of ibrutinib in the same way that someone with diabetes or hypertension would take medication for a chronic condition. His CLL medication has allowed him to live with CLL as a manageable condition rather than dealing with common side effects that many cancer patients deal with. Allan has also learned that educating himself about CLL is vital even for someone with a medical background. He’s experienced the value of patient education. And after he learned about the Patient Empowerment Network (PEN) from his oncology team in Connecticut, Allan shares, “I also know from PEN that there are other medications if this doesn’t work out. And I’ll go from there. PEN is keeping me educated to the fact that there is ongoing research, and there are other avenues; it’s not a death sentence.”

When he was first diagnosed, despite his and his wife’s medical backgrounds, Allan felt scared and depressed. He spoke with a friend in the medical field who said, “My father and uncle have CLL. If you start fretting about it, I’m going to wring your neck. They’ve been living with it for years, and it’s not that big of a deal.” He’s since come across more and more people in his life living well with CLL thanks to their efforts to become educated and proactive in managing their diagnosis, which continues to encourage him.

Allan credits PEN with helping him in his CLL journey, “PEN has educated me further along than if I went at this alone. Dr. Google is not exactly the best source of information, and Dr. Facebook isn’t a reliable source either.” Allan looks for reliable sources, “PEN is where I can get questions answered and get the proper answers from knowledgeable people in the oncology field.”

During his CLL journey, Allan has received valuable advice from others and is now happy to be in a position to help other CLL patients. His advice for other CLL patients? “Live your life. Be active. Staying active helps tremendously. And don’t panic. Everybody has the tendency to go crazy. It’s the big C word. I was scared also. I didn’t know what this was all going to mean. But as my oncologist told me, ‘You’re not going to die from this. We can take care of it. Just don’t panic.’”

Mind the Gap: How to Handle a Cancer-Related Absence in Your Work History

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Are you looking for a new job after cancer treatment? Perhaps you left your last employment after your diagnosis, or maybe you are still in your current job but want a fresh start in a new position, one which offers you more flexibility or a new career direction.

If you had to leave a job to undergo treatment, this brings up the question of how to explain those missing months (or years) from your work history. How do you account for this time when updating your resume? Will you be expected to talk about it at an interview?

Let’s start with your resume.

For the moment, put aside any worries you may have about how to explain the gap in your job history. Instead, grab a pen and a piece of paper and list at least ten great qualities and skills you have. Ask your friends and family to help you brainstorm the list if you get stuck.

When it comes to writing your resume, forego the traditional chronologically based CV (listing job titles, companies and dates in chronological order), in favor of a more dynamic skills-based resume. If you really do need to add your work history include the number of years of service, rather than detailed dates.

Go through your list from earlier and circle any skills that relate to the job for which you are applying. Add your skills in bullet point format and under each bullet point, provide an example of an area of accomplishment related to this specific skill.

Review Your Digital Footprint

One of the things that I wish now I was more mindful of at the time of my own diagnosis, is the digital footprint I was leaving for future employers to find. Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment. But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.

With an increasing number of employers Googling prospective candidates, you may want to take some steps to protect your privacy online.

  • Google yourself to see what people who search for you online will find.
  • Set your privacy settings on sites like Facebook and Instagram to high so that nothing will be seen by people who aren’t on your friends and family list.
  • Delete what you can from your postings on Facebook and other media that talk about your cancer.
  • Set up a Google Alert to monitor mentions for your name online.

Create a Professional LinkedIn Profile

When it comes to your digital footprint it’s not all bad news. There is still one social network that you can turn to your advantage when it comes to job seeking. Spending time on creating a professional profile on LinkedIn can be enormously helpful to present the best online impression to prospective employers. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.

While you may already have a profile on the platform, is it optimized for a job search? LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform.

Here are some quick tips to optimize your profile:

  • Make your first visual impression count by displaying a high-quality professional photo.
  • Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
  • Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
  • Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
  • Join industry-relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
  • Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunchtime.

Handling the Job Interview

Congratulations, you’ve made it to the interview stage. Remember, you do not have to mention your cancer diagnosis during either the application or interview phase. If an interviewer draws attention to a gap in your career history, have a prepared explanation that you feel comfortable with – for example, you might put the gap down to personal issues that are resolved now. Then turn the conversation back to your strengths and suitability for the job. The more you prepare your answers prior to the interview, the more relaxed and at ease, you will come across during the interview.

Of course, you may decide to be upfront about your cancer diagnosis. Salivary gland cancer survivor and author of Travail et Cancer, [1] Magali Mertens de Wilmars, encourages job seekers to ask themselves “if you want to work for someone who would take the fact that you’re a cancer survivor as a weakness?”

What If You Decide Not to Conceal Cancer?

Everything I’ve written thus far supposes you have finished active treatment. What happens, if, you are, in the words of melanoma patient, Kay Curtin, “a cancer patient, who is well, but will always be in treatment,”? “Would we have the same resistance to disclose if say we were diabetic?” she asks. “How will I be perceived by potential employers, will they want to invest in me or is self-employment the lesser of two stressors?”

My own decision to start a blog after my breast cancer diagnosis sealed my fate for the future. It has forced me to be open about my cancer history, a decision which in turn catalyzed a new (self-employed) direction for my career. For me pivoting my career to patient advocacy is one of the more positive things to emerge from cancer. Perhaps this too will be an opportunity for you to reconsider how, instead of concealing your cancer history, you might use the experience to decide on a new direction for your own life.

Notes

[1] Travail&Cancer (travailetcancer.org)

Understanding the Oncology Care Model

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Some of you may have received a letter from your oncologist notifying you that your oncologist is participating in a program called the Oncology Care Model. It was sent out to Medicare patients who are currently being treated by this provider. This letter informs you that you still have all the Medicare rights and protections including which health care provider you see. However, if you do not want to participate in this program, your opting out will require you to find a new provider. This can be very daunting for a patient that has been getting care and have a relationship established. Therefore, I want to give a brief overview of the Oncology Care Model, (OCM).

This program was developed by the Center for Medicare and Medicaid Innovation (Innovation Center) which was established by the Social Security Act and added to the Affordable Care Act. Its purpose was to test innovative payment and service delivery models to reduce program expenditures and improve quality for Medicare, Medicaid, and Children’s Insurance Program beneficiaries. The practices participating in this program have committed to providing enhanced services to Medicare beneficiaries, which includes care coordination and navigation, and to using national treatment guidelines for care.

Because cancer is such a devastating disease and because a significant proportion of those diagnosed with cancer are over 65 years of age and Medicare beneficiaries, this provided the OCM, CMS, in partnership with oncologists, other providers and commercial health insurance plans, the opportunity to support better quality care, better health, and lower cost for this patient population. It is intended to improve our nation’s health by providing clear measurable goals and a timeline to move Medicare and the US healthcare system toward paying providers on the quality of care rather than the quantity of care that they give their patients.

OCM focuses on Medicare Fee for Services beneficiaries receiving Chemotherapy treatment and includes the spectrum of care provided to a patient during a six-month episode that begins with chemotherapy.

The benefit to the patient would include enhanced services, including

  • The core functions of patient navigation to find other patient-focused resources.
  • A care plan that that meets your needs
  • Patient access 24 hours a day, 7 days a week to an appropriate clinician who has real-time access to the practice’s medical records: and
  • Treatment with therapies consistent with nationally recognized clinical guidelines.

There is no additional cost to patients to participate in this program. Medicare will pay for the full amount of the services. There is however a survey that patients would need to participate in to provide feedback to help improve care for all people with Medicare.

To get a good understanding of this program so that you can make the best decision regarding your care, don’t hesitate to share with your treatment team any questions or concerns you may have. Visit online at www.innovation.cms.gov/initiatives/oncology-care or call 1-800-MEDICARE (1-800-633-4227).

#patientchat Highlights – Building Trust: Striving for Equitable Care

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Last week we hosted a “Building Trust: Striving for Equitable Care” #patientchat. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Equality vs. Equity

Increasing Trust in Medicine

#patientchat Highlights - Building Trust: Striving for Equitable Care

Share Your Story

#patientchat Highlights - Building Trust: Striving for Equitable Care

Full Transcript

How to Partner With Your Doctor on Treatment Decisions

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How to Partner With Your Doctor on Treatment Decisions from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasms (MPN) expert Dr. Mark Heaney explains the role of shared decision-making when choosing therapy and discusses how MPN patients can benefit from taking an active role in their care.

Dr. Mark Heaney is a hematologic oncologist and Associate Professor of Medicine at the Herbert Irving Comprehensive Cancer Center of Columbia University. Learn more about Dr. Heaney, here.

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Transcript:

Katherine Banwell:    

 The terms “shared decision-making” is being used lately when we talk about patient care. What does that term mean to you?

Dr. Heaney:

Well, I think it’s really important for patients to be involved in their care, and I think it’s part of shared care, and I think that patients who are really in partnership with their physicians are able to make better choices, and there’s much better communication.

So, to me, that’s the basis of the physician-patient relationship. It’s less of an asymmetrical relationship and much more of an equal relationship.

Katherine Banwell:

Why should patients take an active role in their care? How do they benefit?

Dr. Heaney:

Well, patients who take an active role in their care, I think, provide much more input to their physicians and let them know how they’re feeling, and I think that allows their physicians to know much better what kind of side effects they might be having, whether they’re getting any benefit from the drug, whether they’re having symptoms that are related to the disease, and that kind of communication is really central to patients being able to make the best decisions for themselves and getting the best advice from their physicians.

Why Should You Ask About Lung Cancer Biomarker Testing?

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Why Should You Ask About Lung Cancer Biomarker Testing? from Patient Empowerment Network on Vimeo.

Biomarker testing is a vital component of lung cancer care. Dr. Manish Patel, a lung cancer expert, shares important questions for patients to ask about this essential testing to help ensure optimal care.

Dr. Manish Patel is a medical oncologist and Associate Professor of Medicine in the Division of Hematology, Oncology and Transplantation at the University of Minnesota. Learn more about Dr. Patel, here.

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Transcript:

 Katherine Banwell:

Why should lung cancer patients ask their doctor about biomarker testing?

Dr. Patel:

It’s extremely important. Biomarker testing is really the guiding principles by which we make a treatment plan for lung cancer patients in 2021.

We know that every patient’s lung cancer is a little bit different at the molecular level. So, they might look the same under the microscope, but, you know, if we get to a more deeper level, we can understand that they are quite different and they may respond differently to different treatments.

And so, it’s extremely important. And I think it’s important to know that nationwide we don’t always do a great job of doing real adequate biomarker testing. And so, from a patient perspective, it’s really useful to be an advocate for yourself and to ask your physician, you know, “Have we done biomarker testing, and to what extent have we done biomarker testing?” because it’s not uniform across the country at the moment.

Katherine Banwell:

Are there specific biomarkers that affect treatment choices?

Dr. Patel:

Absolutely there are. So, as an example, the molecular testing with DNA mutation analysis – so we actually look at the mutations that are present within a patient’s tumor, and that really does define a group of patients both in the curative setting and in the setting with more advanced disease that defines our treatment choices. Likewise, PD-L1 is a biomarker now that is being incorporated onto whether or not we use immunotherapy or whether we use immunotherapy with chemotherapy for patients that don’t have mutations.

So, it’s become an extremely important part of our treatment regimen. 

Shared Decision-Making: Your Role in Lung Cancer Treatment Choices

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Shared-Decision Making: Your Role in Lung Cancer Treatment Choices from Patient Empowerment Network on Vimeo.

Lung cancer treatment decisions involve various factors, but what role should the patient play when choosing therapy? Lung cancer expert Dr. Manish Patel explains the considerations involved, the concept of shared decision-making when making a treatment choice, and provides questions to ask about a proposed treatment plan.

Dr. Manish Patel is a medical oncologist and Associate Professor of Medicine in the Division of Hematology, Oncology and Transplantation at the University of Minnesota. Learn more about Dr. Patel, here.

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Transcript:

Katherine Banwell:

When making a treatment choice, what three key considerations are there for lung cancer patients?

Dr. Patel:

Well, I think always the first one that’s most important is really the patient in front of me, you know, what their physical function is, what their other medical problems that they might have. Number two is always going to be to consider the stage of the cancer, how advanced the cancer is. And then really with regards to lung cancer these days, we really have to consider what kind of lung cancer it is. And I don’t mean necessarily just differentiating between the kinda major subtypes of lung cancer, but really looking at more detailed understanding of the specific type of lung cancer because it does, sort of, guide our treatment.

Katherine Banwell:

The term “shared decision-making” is being used a lot lately when talking about patient care. What does that term mean to you?

Dr. Patel:

Well, I think what that means is as the oncologist – the treating oncologist – my role is to educate the patient on what the treatment options are, give my recommendations of what I think the best options are for that individual patient.

But really the shared decision-making ultimately means that we have a discussion about what the goals of the patient are and how those match up with what my recommendations are and then come up with a treatment plan that suits both mine and the patient’s needs.

Katherine Banwell:

I know some patients are hesitant to talk to their doctor about questions they may have about how they’re feeling.

Does that come into the shared decision process?

Dr. Patel:

I think it does in some ways. I mean, we do try to explore how much the patient is understanding from what we’re talking about, also make a lot of attempts to understand the concerns or hesitations that a patient might have about what we’re talking about, or perhaps if they are hesitant to talk about certain aspects of their health with us. But we do try to tease that out as much as we can in our patient encounters so we can make really the best decision for that patient.

Katherine Banwell:

Are there questions that patients should consider asking about their proposed treatment plan?

Dr. Patel:

Well, I think it’s always useful for patients to ask, “What can they expect?” You know, we talk a lot about potential side effects – what can happen with the treatments – and oftentimes we’re discussing them in sort of worst-case scenarios.

But I think in some ways it’s sometimes helpful for patients to know what do we expect to happen, why we are discussing the extreme cases – best- and worst-case scenarios – really having an idea of what they should expect from treatment. 

How the Physician Shortage May Affect People With Cancer

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Cancer is a journey that no one wants to take. Yet every day, research is yielding new insights into this fierce adversary, technology is equipping patients with powerful new weapons with which to fight, and treatments are emerging which are boosting both survival rates and patients’ overall quality of life.

Because of this, cancer patients are more informed and more empowered than ever before. Unfortunately, however, there are still things about the cancer journey that are outside of the patients’ control. Among these is the persistent, and worsening, physician shortage.

Origins and Impact of the Physician Shortage

Health leaders, healthcare providers, and patients alike have long recognized that the shortage of primary and specialized care physicians is real, enduring, and detrimental to patients and care workers alike. Experts predict that, in the coming years, the field of oncology is likely to be especially adversely affected by the lack of cancer physicians.

According to recent estimates, the number of patients requiring chemotherapy treatment is expected to rise from 9.8 million to more than 15 million by the year 2040. But even as the demand for oncologists is predicted to surge in coming years, the supply of practicing specialists continues to shrink as current practitioners reach retirement age and leave the field.

The Impact on Cancer Patients

In the face of a physician shortage fueled by rising retirement rates and surging demand, cancer patients may expect some significant changes in how they receive treatment.

The Increasing Role of Nurses

As the physician shortage worsens, nurses are increasingly stepping in to fill the care gap. Not only are nurse practitioners gaining the authority to provide comprehensive patient care, but many nursing specialists including Doctors of Nursing Practice (DNP) are coordinating clinical practices, providing nursing training, and conducting advanced research to optimize patient care.

As healthcare providers turn to high-level roles other than that of the MD, cancer patients should expect to receive care from an array of practitioners, including experts in nursing practices. Cancer patients will benefit from this by having more options to tailor their treatment plans to their particular needs, goals, and values.

For example, DNPs are often strongly connected to clinical research. For patients who are also interested in participating in clinical trials, a DNP can empower patients by offering guidance, support, and access to experimental treatments that might otherwise not have been available through more traditional care methods.

The Ascendancy of Telehealth

In addition to receiving significant amounts of care from nurses and related specialists, the physician shortage is likely to also change cancer treatment through a greater emphasis on telehealth. Though telehealth long predates the outbreak of COVID-19, its efficacy as a treatment tool for the most vulnerable patient populations was truly revealed during the height of the pandemic.

For example, at-risk patients were able to access their healthcare team through virtual consultations from the safety of their own homes without risking exposure to the virus. During this process, many realized that telehealth could streamline healthcare processes and reduce pressure on the overall healthcare system.

As the physician shortage worsens, the healthcare system will likely turn increasingly to telehealth to ensure consistency and quality of care while driving system efficiency. In addition, technologies such as health apps and remote patient monitoring devices will allow healthcare teams to maintain a close watch over patients whenever and wherever needed, reducing the need for hospitalizations and clinical consultations.

The Impact of COVID-19

In addition to the rising tide of planned retirements, the devastating impacts of COVID-19 on healthcare providers are likely to contribute to the physician shortage. As new coronavirus variants emerge and the pandemic worsens, physicians are at significant risk of burnout due both to physical and emotional fatigue.

In light of this, cancer patients will likely notice an increased prioritization of infectious disease prevention in their treatment plan. For example, physicians are increasingly finding themselves battling vaccine hesitancy. For doctors who have dedicated their lives and careers to caring for cancer patients, misconceptions regarding the safety and efficacy of vaccines, and the loss of life such misinformation may lead to, can take a devastating toll on healthcare workers.

As a result, cancer patients are likely to find that vaccinations and boosters are strongly encouraged by healthcare providers as an essential standard of care. As vaccine acceptance rates grow, particularly regarding the COVID vaccine, not only will patients be more protected, but the psychological burden of care and risk of attrition for healthcare providers will also ease.

The Takeaway

The physician shortage is impacting patients and healthcare providers alike. However, cancer patients are likely to feel the impacts of this shortage most strongly. As a result of the shortfall, approaches to care will likely change to rely on specialty practitioners and telehealth technologies, and disease prevention will increasingly become a priority.