Care on the Rise: A Look at 2021 Healthcare Trends 

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With 2021 now in full swing, there are many healthcare trends to watch out for, as COVID-19 has brought to light many nuances of healthcare, including health disparities and inequity. Fortunately, some of these trends may push healthcare in the right direction as the country re-opens.

Telehealth

Telehealth, or an appointment with a doctor via video or over the phone, became a prominent form of care in 2020 and is continuing into 2021. As doctor’s offices began to shut down and everyone began to work from home, our healthcare visits became virtual. Doctors got an inside look at our personal lives and we got a look into theirs. Visits may have, hopefully, been longer than they were in the office because patients were able to get all of their questions answered and concerns addressed. On a personal note, I enjoyed my telehealth visits with my primary and specialty care doctors. Not only did I feel safer at home (and didn’t have to commute to an office), but I felt heard and fully understood – something I don’t always get in an office setting. I believe telehealth appointments will become an integrated part of healthcare in the future and will be especially helpful for patients with limited healthcare access in their geographic region. 

 Rise in Clinical Trials

Along with a new virus came a surge in the number of clinical trials to try and treat it, with many more on the horizon. The National Institutes of Health’s website, Combat COVID, has been a vital link between patients and the government, as they look to drive enrollment. More people became aware of clinical trials as a result of the Pfizer, Moderna, and Johnson & Johnson vaccines being pushed through for emergency use, and it became clearer that diversity in these trials still remains an issue. Moreover, the release of the vaccine has brought health disparities to light, including the disbursement of the vaccine to rural areas and the vaccination rates of White people compared to Hispanic and Black people. Of course, other areas of healthcare besides clinical trials have been grappling with these disparities for decades, but it took a pandemic to really shine a light on how we’re still behind and living in the past. 

Technology Health Apps

There’s an app for everything, right? No one knows the health app industry than the people who use it the most, including cancer patients. In 2020, people used apps more than ever, with over 200 billion hours spent on apps in April alone. Apps were used to stay healthy in a variety of ways, including meditation and talk therapy apps for mental health as well as fitness apps and YouTube videos for staying fit through activities such as yoga and cardio circuits. 

In 2021, the age of “Zoom fatigue,” many healthcare providers are using other apps for telehealth appointments, including Talkspace and Doctor on Demand. Integration with wearable technology, including virtual reality, augmented reality, FitBits, and Apple Watches (with series 4-6 containing an EKG app) is also on the rise. Unfortunately, there’s not one large patient portal that fits all of our doctors…yet. However, there are apps that try to collect a complete picture of our health that are built by using patient-generated health data. What does all of this mean for us as patients with data being collected about every aspect of our health? In my opinion, it’s a scary thought. However, being able to have all of this at my fingertips has actually made my life a lot easier. I’m able to rattle off my list of allergies and even longer list of medications when I visit a new doctor. I’m able to message my doctor via a patient portal through my phone and update him or her about my symptoms. I can tell my specialist about my lab results from a physical with my primary care doctor. As IT advances, apps will continue to populate our devices, collecting more data about us in the hopes of streamlining healthcare and making it more intuitive and efficient. In the age of safety and compliance, it’ll be important to recognize which apps keep our data private and secure. 

Peer-to-Peer Advice for Newly Diagnosed Myeloma Patients

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Peer-to-Peer Advice for Newly Diagnosed Myeloma Patients from Patient Empowerment Network on Vimeo.

Myeloma Network Manager Honora and Myeloma patient Barry stress the importance of finding a myeloma specialist as soon as possible, finding a support group, being comfortable with your healthcare team. Remaining hopeful and positive throughout your diagnosis is key.

Transcript:

Honora Miller

I’d like to point out the importance of finding a myeloma specialist as soon as possible in your myeloma journey. There have been studies done, I can’t point to the specifics of one at this moment, there have been studies done that have shown that myeloma patients who have a myeloma specialist have a better long-term outcome. When you get a myeloma specialist, they’re dealing, they’ve dealt with hundreds, perhaps thousands of myeloma patients, and because of the complexity and variation of the myeloma with the disease, really you need to have that level of knowledge. So that would be something that I would encourage somebody newly diagnosed to find, to be referred to a myeloma specialist, possibly not as their primary provider, but as a secondary guider of the process. I do have that. So, I have a second doctor who I meet with quarterly, say, who is at a different institution who guides my myeloma treatment, and he’s a myeloma specialist and he handled my stem cell transplant. 

Barry Marcus

I think it’s very important to have a support group. Somebody who is newly diagnosed, I would counsel them to seek out a support group now it’s hard in the time of COVID, the support group that I was in, quit meeting because of it. I’m right now in the process of trying to find another one that meets virtually, and I would highly recommend that it feels good to connect with people who are going through the same things that you are, and maybe get varied perspectives on different issues around myeloma.  

I really want to emphasize how important it is to get information and to feel comfortable with your health team and the care that you’re getting and pursue that. Don’t feel like you’re worried about offending anybody, because in the first place, probably you’re not. In the second place, it’s your life. If you die, they go on to the next patient. And you’re done. 

 Honora Miller

True enough. True enough. For new patients, and I’ve talked to quite a few, having hope is something that is very important and having a positive outlook, and when you get this sudden diagnosis, it’s very scary and overwhelming. But I want to encourage people to remain hopeful, to stay positive, this is an as yet incurable cancer, but it’s being treated more and more like a chronic disease, and there’s never been a time as good as now in terms of the number of treatment options and new drugs that are coming down the pipeline, so it’s a time of great hope for myeloma, and I want to emphasize that for people because I do think that it’s important for people to hold on to that. 

Barry Marcus

I couldn’t agree more. That’s well said.

Financial Corner: Health Care Coverage Special Enrollment

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One of the first things President Biden accomplished since taking office was by signing executive orders that will begin to restore and strengthen Americans’ access to affordable and quality health care. Let’s review what he has done and what that can mean for you, your family, and/or your friends. While you read this article, think of other people who you think could benefit and let them know. Just because most of you understand the need for quality insurance as a result of your cancer, others may not need it now but what if something happens in the future and they don’t have it? No one expects cancer to happen to them, it happens to other people, Right?    

The first executive order he signed in regards to health care was to reopen the enrollment period to sign up in the Health Insurance Marketplace (healthcare.gov). Many states that operate their own websites to enroll residents in the healthcare exchange have followed suit and have also opened. This special enrollment lasts from February 15th through May 15th, 2021. After a horrible year of the pandemic and the needs that have arisen as a result, this should be a huge step in bringing affordable healthcare to those who have lost their jobs and find themselves uninsured. The process is very simple and can be done via a phone call or online. And for those who have an illness, this is very comforting because the previous threat to limit access to quality and affordable care because of a preexisting condition is no longer on the table.    

In addition, President Biden is directing federal agencies to reconsider rules and other policies that currently limit Americans’ access to health care as well as consider rules and actions that will protect and strengthen that access.   

Agencies will be directed to review:    

  • Policies that undermine protections for people with pre-existing conditions, including complications related to COVID-19; (Critical since some of these complications can be long-term or lifelong). 
  • Demonstrations and waivers under Medicaid and the ACA that may reduce coverage or undermine the programs, including work requirements;
  • Policies that undermine the Health Insurance Marketplace or other markets that sell health insurance;
  • Policies that make it more difficult to enroll in Medicaid and the Affordable Health care Act; and  
  • Policies that reduce the affordability of coverage or financial assistance, including for dependents. This is important because many people think of children and college-age adults only as dependents but this could be an adult child that is permanently disabled that you take care of.  

These timely steps could provide additional coverage for millions of uninsured Americans. Some of whom may qualify for free or subsidized health insurance.     

As a cancer patient, you realize the cost of healthcare. Having quality care and affordable care can be what allows you to be proactive in your healthcare with your healthcare team to stay on your treatment plan as well as to mitigate and prevent financial toxicity.  

While thinking about these opportunities, don’t forget to consider your current insurance plan if you are enrolled in a Medicare Supplement, Medicare Advantage, or employer plan. Review with your healthcare providers to find out if your treatment may change. Then inquire if the costs are going to change as a result of medication changes or treatment facilities? Or perhaps you anticipate retiring before Medicare age or going on disability. Perhaps you are already on disability and will be completing the 2-year mark and can go on Medicare. Now is the time to review your options before the enrollment period expires.   

Make sure you have the best possible insurance for your needs that you can afford. Don’t let an opportunity pass you by without investigating its benefits. Take a step to strengthen your health insurance program and possibly lighten your financial load.   

Additional information can be found at:  

Read the Full PEN-Powered Activity Guide VI

Living with a Cancer Diagnosis Amid the Pandemic

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Living With a Cancer Diagnosis Amid the Pandemic from Patient Empowerment Network on Vimeo.

Empowered patients, Honora Miller and Barry Marcus, share what it has been like living through a pandemic while being immunocompromised because of their multiple myeloma diagnosis.

Transcript

Barry Marcus:

I have really never hesitated from telling people that I have cancer and I’m immunocompromised and it wouldn’t be a good idea for me to get together with them and people understand that. They know what kind of times were in so I feel like I haven’t really put myself at risk, I have gone out to dinner a few times at restaurants that have outdoor seating, which is now pretty common in my area, and I’m also very fortunate to have gotten both doses of the Pfizer vaccine, so the interesting part of that is going to be whether I’m going to change my behavior because of that, I know I will continue to wear a mask, always when I go outside even though I’m now vaccinated.

Honora Miller:

Yeah, I have found it interesting actually, among a group of my friends, we meet via Zoom every Wednesday, and it’s been interesting to see over the course of the year that we’re now in this. They certainly know that I am compromised, but they forget, and so, of course, I’ve been directed very clearly that I need to do as much sheltering in place as possible to not go grocery shopping, to have things delivered, or my husband often goes grocery shopping and to really…you know, I can’t go to the gym. The gym has been opened a couple of times during this process, it opens and closes, but I can’t go to the gym, I need to do my exercise differently, I can’t go swimming, so there have definitely been changes and I have taken extra care because I’ve really been told in no uncertain terms that I need to. I’m a little anxious about when my son, who I have a high school student, he’s been having remote school when he goes back to school, if I haven’t been vaccinated yet, I’ve been told that I will need to quarantine from him, so we’re hoping that everything will coincide so that I don’t need to do that.

It requires ongoing planning, and I do have friends who have just spent ski week up and Tahoe, and they invited me to come and I can’t come. It’s not something I can do now, and I feel clear in my mind that this is a period of time where I need to not do things so that I can tell the tale later on, and what this experience was like Once COVID is over ’cause it will be.

Read the Full PEN-Powered Activity Guide VI

How Can You Overcome Hurdles in Your Health Journey?

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How Can You Overcome Hurdles in Your Health Journey from Patient Empowerment Network on Vimeo.

Empowered myeloma patients, Honora Miller and Barry Marcus, discuss the biggest hurdle they faced in their health journey and the importance of finding a healthcare team you are comfortable with.

Transcript

Honora Miller:

Hi, I’m Honora Miller, it’s my pleasure to be the Myeloma Network Manager for Patient Empowerment Network and I look forward to speaking with Barry Marcus.

Barry Marcus:

I’m Barry Marcus. I am 70 years old; I was diagnosed with myeloma in 2015. I am a retired Geologist, I worked for the sacrament of County Environmental Management Department for 20 years, and I’ve been retired since 2012. I think my biggest hurdle was finding an oncologist that I was very comfortable with that didn’t hesitate to give me all the information that I wanted, and it took me a while. When I first had my diagnosis, I was in a health plan where I had a very hard time understanding my oncologist, I didn’t have a lot of confidence in him, and I was able — because I had just turned 65 to get on Medicare and change health plans outside of the open enrollment process, and I was fortunate enough to find an oncologist that I now have complete confidence in, and I’ve been seeing him for four or five years now, and I wouldn’t want anyone else.

Honora Miller:

That’s great to hear that you have found someone you’re comfortable with. That makes such a difference. I found that for myself personally, the greatest challenge was to actually get diagnosed, I was comfortable with my medical providers, yet we didn’t know what was going on with me, and it was through their perseverance in tolerating my ongoing questions, they were really helpful in continuing to do testing, because we had no idea I had mild anemia that persisted and I had fatigue, and they had no idea what that was, and I was fortunate enough that I felt confident in those medical professionals that when I did get a diagnosis, through a lot of perseverance I felt like, okay, we got to roll. The data showed that I needed to move quickly. I can’t imagine what I would have done in that moment if I didn’t feel comfortable with them.

Read the Full PEN-Powered Activity Guide VI

Is There Value in Seeking a Second Opinion?

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Is There Value in Seeking a Second Opinion from Patient Empowerment Network on Vimeo.

Empowered myeloma patients, Honora Miller and Barry Marcus, share the importance of getting a second opinion and how to navigate if you are reluctant to ask for another physician to review your case.

Transcript

Barry Marcus:

I sought out a second opinion right after my initial diagnosis, I knew very little about multiple myeloma when I was first diagnosed, and as I just mentioned, I didn’t have a lot of confidence in the doctors in my initial HMO, so I wanted to make sure just for myself and for the future, whether what they were proposing as a treatment plan made sense for me, and so I did seek out a second opinion and I was so glad that I did. It did give me a little bit more confidence in what the initial HMO was proposing because the doctor that I saw, said, Yeah, this is the correct thing to do for you. Now, since I’ve been with the same oncologist now for a number of years, I have gotten second opinions on things that he’s told me I wanted to do, and I did have to overcome my initial reluctance to do that for kind of fear of hurting his feelings or thinking that maybe he wouldn’t like me as much after that, but in speaking with many of the infusion nurses, they say it’s quite common and the doctors don’t mind at all, and it’s really something that I need to do to feel like I’m getting the best course of treatment.

Honora Miller:

I have found too that in speaking with people that same reluctance around not wanting to hurt feelings, but indeed the doctors themselves, I’ve have talked about it directly with my doctor, it’s so common at a practice. It’s just part of their world. Of course, we don’t know that and we’re trying to be sensitive, but they’re not concerned about it at all. In fact, even changing doctors, they don’t even blink at it because they’ve got so many patients that they don’t concern themselves when you decided to move on to a different doctor, ’cause I have changed doctors when I didn’t feel like it was the right fit, oncologists, and that has been a really good thing to do when I didn’t feel comfortable.

When I didn’t feel, I guess it was as a result of COVID, it kind of gave me like another lens to look at my relationship with my doctor and my comfort level, ’cause I’ve had several oncologists, several of them have moved on. Once I realized, okay, this is living with myeloma during COVID, do I feel comfortable with this oncologist being my doctor that I was realizing, no, okay, I need to switch doctors till I feel comfortable, and I did get a referral within the same practice of a different oncologist, and I’m so happy that I did that, ’cause it makes all the difference.

We communicate much more easily, and I feel like if anything goes on with COVID, like I could rely on him to make some good decisions around my health.

Barry Marcus:

One of the things that I’ve come to realize is that treating myeloma is just as much an art as it is a science, and there is no one-size-fits all for any patient, and if I get a suggestion from a second doctor, I bring it back to my primary oncologist, he’s been very accepting of it and willing to consider making some changes maybe that I got from seeking out a second opinion. So, I feel like I’ve been fortunate in that.

Read the Full PEN-Powered Activity Guide VI

A New “New Normal”: COVID-19 Vaccine Guidelines and Cancer Patients 

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Editor’s Note: This blog was updated 1/31/22 to reflect current vaccine guidelines.

As we enter the 1-year mark of living in a pandemic, there have been a lot of changes in a world that has seemed stagnant, void of time. The inadequacies in healthcare that have been hiding behind the transparent curtain are now front and center, including health disparities, as well as access to and quality of care. We have also witnessed an influx of information about COVID-19 and the vaccine, and as cancer patients, it makes everything that much more complicated. 

Luckily, there are trusted resources we can turn to for guidance on our most pressing questions: 

What are the current vaccines? What age groups are eligible to receive them? 

  • Moderna: 18+ years old
  • Pfizer-BioNTech: 5+ years old
  • Janssen (Johnson & Johnson): 18+ years old

How many doses of each vaccine are given and how far apart? 

Moderna

  • Primary Dose: 2 shots, 28 days apart 
  • Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (COVID-19 vaccines) 5 months after the last dose in their primary series.

Pfizer-BioNTech:

  • Primary Dose: 2 shots, 21 days apart 
  • Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (COVID-19 vaccines) 5 months after the last dose in their primary series. Teens 12-17 years old should get a Pfizer-BioNTech COVID-19 Vaccine booster 5 months after the last dose in their primary series.

Janssen (Johnson & Johnson): 

  • Primary Dose: 1 shot
  • Booster Dose: Everyone ages 18 years and older should get a booster dose of either Pfizer-BioNTech or Moderna (mRNA COVID-19 vaccines) at least 2 months after the first dose of J&J/Janssen COVID-19 vaccine.  You may get J&J/Janssen in some situations.

If I am currently undergoing treatment, can I get the vaccine? 

Yes, as long as components of that vaccine are not contraindicated. Contraindications include: 

  • Severe allergic reaction after a previous dose of an mRNA or viral vector COVID-19 vaccine or any of its components 
  • Immediate allergic reaction of any severity to a previous dose of an mRNA COVID-19 vaccine (both Moderna and Pfizer-BioNTech) or any of its components 
  • Immediate allergic reaction of any severity to polysorbate
  • Immediate allergic reaction of any severity to any ingredient in the Janssen (Johnson & Johnson) vaccine such as polysorbate

If I am not currently undergoing treatment and still have cancer, can I get the vaccine? 

Yes, as long as components of that vaccine are not contraindicated. See contraindications above. 

If I no longer have cancer, should I get the vaccine? 

Yes, as long as components of that vaccine are not contraindicated. See contraindications above. 

Does it depend on when I get the vaccine based on what type of cancer I have/had? 

Yes, for guidelines on specific cancers, visit this link. 

Should my caregiver and/or people whom I live with also receive the vaccine? 

Yes, when the option becomes available to them. 

If I have previously had COVID-19 (tested positive), can I get the vaccine? 

Vaccination should be offered to persons regardless of history of prior symptomatic or asymptomatic COVID-19 infection. 

Am I fully protected after receiving the vaccine? 

At this time, researchers are unsure of how much protection the vaccine provides. Therefore, it is still recommended to wear a mask, wash yours hands for at least 20 seconds, and practice social distancing. 

However, vaccinated patients who are exposed to someone with suspected or confirmed COVID-19 aren’t required to quarantine if they: 

  • Are fully vaccinated (i.e., ≥ 2 weeks after receiving the second dose in a 2-dose series, or ≥ 2 weeks after receiving one dose of a single-dose vaccine) AND 
  • Are within 3 months after receiving the last dose in the series AND 
  • Have remained asymptomatic (without symptoms) since the current COVID-19 exposure 

What are common side effects of the vaccine and how long do they last? 

Side effects can include: 

  • Pain and swelling on the arm where you received the shot 
  • Fever, chills, fatigue, and headaches 
  • Most post-vaccination symptoms are mild to moderate in severity, occur within the first three days of vaccination, and resolve within 1–3 days 

Of course this list is non-exhaustive, and there are a lot more questions to be asked and more answers to be found as frontline workers continue to study the virus and its variants. For the latest updates, follow the Centers for Disease Control and Prevention (CDC) website, as well as American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN). We’re in this together, one day at a time. 

Sources:  

  1. https://www.ama-assn.org/system/files/2020-12/covid-19-vaccine-patient-faqs.pdf 
  2. https://www.cdc.gov/vaccines/covid-19/info-by-product/clinical-considerations.html
  3. https://www.onclive.com/view/nccn-releases-covid-19-vaccination-guidance-for-patients-with-cancer 

Cancer-Specific Resources:

  1. Is the COVID-19 Vaccine Safe for Myeloma Patients?
  2. What AML Patients Should Know About the COVID-19 Vaccines
  3. COVID-19 Vaccination: What Do Myelofibrosis Patients Need to Know?
  4. COVID-19 Vaccination: What Do Breast Cancer Patients Need to Know?

Empowered Patients Empower Patients: How to Take Charge of Your Diagnosis

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What comes to your mind when you think of the word “empowerment?” Do you think of a specific person, thing, or event? What about an “empowered” patient? Do you think of a patient or patient advocate who goes above and beyond and fights for their health care, or embodies themselves with a wealth of knowledge about a specific disease? At the Patient Empowerment Network (PEN), we believe that patients have power. They have the power to learn about and understand their diagnosis, find a healthcare team that understands their needs, values, and morals, and support other patients on their cancer journey – all to create better health outcomes. Are you looking to become an empowered patient? Here a few ways:

  • One of the most important things about your journey is that it is your own. No cancer diagnosis is alike, just like no patient is alike. Your story is unique, and the power of sharing your story is unmatched. Storytelling is what connects others and develops strong bonds. Share your story with your family and friends, post about it on social media, and connect with patient advocacy organizations (including PEN!) to share your story across the globe. 
  • Create your own advocacy blog: This article has how-tos and best tips. 
  • Participate in Tweet chats: Tweet chats are chats that occur on Twitter at different times/days using a hashtag. PEN has a tweet chat called #patientchat that occurs every other Friday. These chats are hosted by a variety of organizations around different topics. As a participant, you answer a series of questions prompted by the host. It can be a great environment to express your opinions and talk about your experience. You can find Tweet chats relevant to you by using Symplur’s Healthcare Hashtag Project, which lists hashtags specific to what you’re looking for. You can also see if specific organizations you’re following on Twitter host chats or start your own! 
  • Join a support group in-person or online. There are a number of different organizations that offer support groups (here are some of my favorites!) where you can share your story and hear other’s, ask questions, and relax knowing you’re in a judgement-free environment. 
  • Utilize PEN’s Digitally Empowered Program: This program consists of 10 modules with videos and resource guides to navigate all that technology has to offer including navigating healthcare resources, forming a support network, using social media, navigating your health with different devices and apps, and using telemedicine. 
  • Keep updated on the latest research about your diagnosis, and share what you find relevant to you with your healthcare team and/or on social media. This article explains how to read scientific papers. 
  • Utilize PEN’s online resources tailored to the cancer community, as well as specific cancers, that focus on what to do when you’re newly diagnosed, testing and treatment options, clinical trials, and accessing and affording healthcare. 

“Wait, There’s a Good Cancer?”

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When the Luck of the Draw Leads to the Short End of the Stick

Cancer is one of the most feared diseases. Everyone is affected by it in some way, but no one really imagines getting it themselves. So imagine hearing that you got the “good” cancer, a commonly used term for thyroid cancer. That can’t be right. Cancer is cancer…isn’t it? But who are we, as patients, to question what our doctors tell us? They’re the ones who went to medical school and have years of training. But maybe thyroid cancer isn’t that bad?

That’s what I thought when I was told that my cancer was the “good” one by more than one doctor. In fact, one doctor told me that thyroid cancer was “the cancer to have if you had to get it.” I didn’t have any symptoms at the time, so I took these words, spoken to me by medical professionals, as truth. Unfortunately, I learned that there was no such thing as a “good” cancer once I began treatment.

While thyroid cancer is slow-growing, does have a very good prognosis, and can be easily treatable, no cancer is the same. For example, I had the papillary variant of thyroid cancer, a common diagnosis amongst most thyroid cancer patients. I underwent surgery to remove half of the thyroid with the tumor, but my treatment didn’t end there. It was discovered in the pathology report that I had metastasis that was not shown on the original ultrasound that showed the tumor in my thyroid. As a result, I had to undergo a second surgery for the removal of the remaining half of my thyroid. Additionally, I was told by my surgeon that, because of the metastasis, he didn’t know if cancer could be elsewhere in my body, and I would need to undergo oral radiation therapy. “Wasn’t this the ‘good’ cancer?” I thought over and over.

Furthermore, what doctors don’t explain, at least very well in my case, is what not having a thyroid is going to be like. I wasn’t aware of what a thyroid was nor its functions when I was told that it was harboring a tumor. Nor did I know until I had to be placed on a supplement, or rather a replacement, for my lack of thyroid. I learned quickly that the thyroid essentially interacts with every other system in the body through controlling metabolism, heart rate, temperature, energy level, etc. My body slowly adjusted to this new medication with a prescribed dose that was initially “simply a guess” based on my age, weight, and overall health. From there, my healthcare team and I adjust the dose based on how my body responds. If I think about this, especially as a woman, my body goes through many changes as I age, and I’m sure many of them are affected by a properly-functioning thyroid, which I no longer have. I’m not saying that I’m not eternally grateful for their actually being a supplement I can take to, quite literally, live, on a daily basis. What I am saying is that the stigma and the choice of words and phrases surrounding this cancer, perpetuated by medical professionals needs to stop. At the very least, they need to recognize thyroid cancer as a cancer, a diagnosis that inevitably impacts the life, good or bad, of every patient who has this terrible disease well into survivorship.

If you’re a thyroid cancer patient, whether newly-diagnosed, in treatment, no evidence of disease (NED), or anywhere in between, educate and advocate for yourselves. Find doctors who take the time to understand your wants and needs as an individual human being. Never think that your cancer is “less than,” because it matters.

The Warrior in Me Saved My Life

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After experiencing increasing fatigue over the course of several years, I started to miss gatherings with friends and family and got to the point of taking one day off a month from work to sleep all day. This was unlike me as I was always very involved with professional and volunteer activities and had a very full schedule including parenting my young son with my spouse. After a lingering cold evolved into bronchitis, I began to explore what was wrong with the assistance of my primary care provider (PCP). I had mild persistent anemia, but nothing to warrant the degree of extreme fatigue that I was experiencing. She (my PCP) was very tolerant of my various Google-induced ideas, graciously accepting some to follow up with tests and others to set aside. 

After eleven months, a test showed that I had elevated M-proteins and my PCP sent me to a hematologist/oncologist who after greeting me reviewed several years’ worth of labs and then turned to tell me to come back in six months. She did not examine me. She did not ask me about my symptoms. She prepared to usher exit the room. I felt that I could not leave her office without her understanding how significantly the fatigue was impacting my daily life. This is when the inner warrior in me said NO! I did not move from my chair. I told her, “Nope. Now is the time that I need to tell you about my symptoms.” (Now this was somewhat uncomfortable for me because I have been well-trained to be polite and professional with doctors, but I had had enough. My New York elbows were coming out!) 

I read from a list that I had prepared detailing what I had been able to do prior to feeling unwell and what I could do now. As I went down the list for several minutes, she looked at her watch in a disgruntled manner, finally asking me “What do you want?” I told her that I wanted to feel well. I did not feel well and believed that something was wrong. I wanted her to do more tests. She agreed and also sent me out to schedule an appointment in six months. One week later at 8 AM as I was on my way out to work, SHE called me to tell me that she had scheduled a bone marrow biopsy (BMB) for the next day. I cleared my calendar. The BMB results confirmed that I had stage 2 Myeloma with more than 80 percent involvement in my bone marrow. My husband and I learned of this on the day before Thanksgiving. We were both in shock. We had so much to learn and at that point had no idea how much this diagnosis was going to change our lives. 

After a quick success of additional tests scheduled STAT, I started chemotherapy within two weeks. Getting a diagnosis took A LOT of persistence and determination when specialists minimized what I knew about my body — that something significant was wrong. And it was. Today is five years to the day of that diagnosis and I still wonder whether I would be diagnosed today if I had not INSISTED upon further testing. To her credit, the oncologist/hematologist did eventually acknowledge that I was right to press her to do more tests and that it was through my self-advocacy that I achieved a diagnosis.

What I would hope that others would take away from this story is how essential it is to be aware of your own body and to keep advocating (again and again) for yourself with doctors even when your symptoms are minimized. I was trained to advocate for others as a social worker, but it took intentional work to give myself permission to say no to doctors at first politely and then later not so politely to demand additional testing until an outcome was achieved that explained my health issues. Be persistent. You know more about your symptoms than anyone else. Do not stop until you find out what is going on with your body.

Loving My Life | CLL Poem

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Chronic Lymphocytic Leukemia

is what I HAD.

I was given IV Rituxan,

it wasn’t too bad.

 

I sat in a Chemo chair,

and had several types of IV.

I was there for about ten hours,

and I watched TV.

 

I slept or read

until the IV’s were over.

Then I called my ride,

and said, ” Come on over.”

 

I soon arrived at home,

and had a late meal.

Then I went to bed,

and slept with zeal.

 

I didn’t achieve remission,

but I’m doing okay.

I’m living and loving my life,

enjoying each and every day.

The Caregiver Impact: A Vital Part of Healthcare

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Carly FlumerCarly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University […]

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Empowering Ourselves Forward: Applying Skills to Our Cancer Journey

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During the pandemic, all of us have had to do some adjusting, some more than others. As cancer patients, we recognize the “new normal” everyone else is experiencing. While this can be detrimental, it can also be seen as somewhat gratifying. The non-cancer world finally understands what we’ve gone through and/or are going through on a daily basis and for the rest of our lives. Yet we’ve all learned new skills and coping mechanisms to make the best of our situation:

Virtual Appointments (Telehealth)

By now, the majority of patients have experienced at least one telehealth appointment where we see a doctor, NP, PA, etc. virtually. Whether this a completely new experience or not, there are many ways in which we can benefit from these appointments, which, hopefully, continue into the future.

What can be applied in the future:

  • Writing down a list of questions before your appointment so that nothing is missed
  • The feeling of comfort with your health care professional, especially if they weren’t in a white coat. They’re humans just like us
  • Asking questions when you don’t understand something – there is time!
  • The importance of having a caregiver as a second set of eyes and ears

Being Active

Gyms were closed (and some still are) for a long period of time, which forced us to be creative in being active.

What can be applied in the future:

  • If you watched YouTube videos or downloaded fitness apps, continue to use them to apply those movements to your routine
  • If you tried free classes offered by a local studio or gym, see what these places offer in-person
  • For motivation, grab a family member of friend to keep you accountable

Mindfulness

Perhaps the hardest part of going through the pandemic is the mental aspect, especially for cancer patients who are considered more vulnerable.

What can be applied in the future:

  • Continue using apps and YouTube videos to guide you through meditations
  • Keep a journal to write down your feelings
  • Set intentions at the start of each day
  • Remember how far you’ve come and what you can be grateful for

Family and Friends

Social distancing and wearing masks were suggestions (and in some states mandatory) to help stop the spread of the virus. This led to family and friends not being able to see one another, often for months. What’s more is the masks often concealed our expressions, making communication a little bit harder.

What can be applied in the future:

  • Spend more time with people who care about you, knowing it is possible for it to be taken away from you
  • Practice being in the moment, really focusing on what the person is saying and watching their facial expressions
  • Remember your own needs: people may now want to get together more often, but that may not be possible due to a number of factors, including your place in treatment, symptoms, and mental/physical/emotional states. Take the time you need for yourself

Communicating About Cancer: A Brief Guide to Telling People Who Care

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Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Reaching the Peak: Finding Resilience During Cancer

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What does it mean to be “resilient” as a cancer survivor? Does it mean having the courage to remain positive? The strength to carry yourself into the next chapter of this “new normal” life?

In my opinion, having resilience or being resilient means all those things and more. However, resilience can also be built upon a collaborative effort made by both the patient and their healthcare team.

In the recent 2020 symposium held by the National Coalition for Cancer Survivorship, results were presented from a survey that stated patients believe that being proactive in the beginning of treatment can lead to better health outcomes. Part of being proactive on the patient side is asking questions of your care about diagnosis and prognosis, treatment options, physical/mental/emotional side effects, and short-term and long-term effects on quality of life. During the treatment process being proactive can also consist of contacting your care team with questions rather than guessing what “should be” happening, instructions on how to take medications, and any unexplained side effects.

Managing these side effects can also count as resilience. For example, speaking with a social worker or seeing a therapist may help with the emotional trauma of a diagnosis. Moving your body and getting your blood flowing by walking, running, yoga, and other forms of exercise can show mental and physical resilience. Most importantly, asking for help when you need it and being specific in what you need can show determination.

At the end of treatment, the journey is not over. Rather, it can feel like it’s just beginning. As you look back on how far you’ve come, contemplate if there’s anything you would’ve done differently. Maybe you were fearful, and now you’re more curious. Maybe you were afraid to share your story and what people would think of you. Now you know that none of that matters, except what you think, what you feel. Your story is powerful, your feelings are valid, and you have the courage to push forward.

Resilience isn’t something to be won; it’s something to be explored. Just like a diagnosis, it doesn’t come easy. But take a moment, breathe, and know that there are people rooting for you. Keep going.