Involving Patients in their Care: The Clinical Trial and Drug Development Processes

Patient involvement in every facet of healthcare is incredibly important in creating better patient outcomes. I believe this is especially true in the rare and chronic disease communities, including cancer. One facet that is particularly key for patient engagement is the development of drugs produced through the clinical trial process.

Clinical trials can cost millions to fund with the goal of producing a product(s) that may or may not help it’s targeted disease population. Thousands of patients rely on these trials to find a cure and/or enhance their quality of life by providing symptoms of relief. Yet many don’t know about them, and if they do, it’s a struggle to find them, much less enroll in one.

As a person who takes on many roles, including a rare disease patient and a cancer patient, as well as someone who has translated clinical trial protocols for a lay audience and now recruits for those trials, I have seen firsthand the barriers that patients face when it comes to potentially life-saving treatments. Below is what I have encountered and what we as healthcare professionals can do about it:

Visibility Into Clinical Trials

While most patients know of and about clinical trials, they are often not aware that they may be an option for treatment. Healthcare is a business, and because of this, doctors feel like they’re “losing” their patients (aka revenue) when they refer their patients. However, most healthcare organizations, facilities, etc. boast that they’re focused on patient-centered care. Patient-centered care means focusing on the needs of each patient and providing the best treatment possible even if it comes from another source.

The Language of Clinical Trials

Clinical trials are often discussed using medical jargon that is too confusing for patients to understand, especially the eligibility criteria. Patients should not be expected to learn a new language to understand the treatment process. Rather, they need resources that will help them understand if they qualify, what will happen in the trial, and how long they’ll be in the trial for.

Outcomes of Clinical Trials

A patient who had participated in a clinical trial once told me that the investigators focused mainly on whether the drug that she was receiving was treating her condition and never considered her quality of life. Quality of life should automatically be included as a measurable outcome in each clinical trial even if it’s not the main purpose.

Involvement in Clinical Trials and Drug Development

Patient centricity, as written above, has become a buzzword in the healthcare industry. The drug company, AstraZeneca, defines it best: “Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best outcome for that patient and their family.” Are we really doing this if patients aren’t involved in the drug and clinical trial development processes?

How can patients invest themselves, and the government and pharma invest in patients, to potentially get a better ROI?:

  • Look at Patient-Centered Outcomes Research Institute’s website, whose work focuses on outcomes most important to patients and research that focuses on gold-standard randomized controlled trials, as well as observational studies.
  • Sign up for AstraZeneca’s Patient Partnership Program
  • Research articles on drug development for your disease and contact the authors
  • Engage in the FDA’s Patient Representative Program
  • Join the FDA’s Center for Devices and Radiological Health (CDHR)’s Patient Engagement Advisory Committee
  • Join the FDA’s Patient Engagement Collaborative
  • Participate and/or request a Patient Listening Session
  • Present at an Open Public Hearing Portion of an FDA Advisory Committee Meeting
  • Get involved in:
    • The FDA’s Center for Drug Evaluation and Research (CDER)’s Patient-Focused Drug Development program by subscribing to their email updates
    • A patient advocacy group and/or think tank
    • An organization related to your diagnosis that may have doctors on their Board that you can reach out to and share your story and the importance of involving patients

Find more information in this PDF created by Global Genes

Empowering One Another: Helping Your Healthcare Team Help You 

Life is all about making choices, and I think the same could be said about cancer in some capacity. If we take the time to think about it, we have choices in: 

  • What doctor we see for diagnosis and whether we seek a second opinion 
  • How we’re treated by our doctors and healthcare team 
  • What type of treatment we receive, if we’re lucky 
  • How we feel about our diagnosis and perceive our prognosis 
  • What we do with the information we receive and the knowledge we gain 

So you see, it’s all about empowering ourselves and our healthcare team. But how do we go about empowering our healthcare team in the choices we make? Here are ways to try: 

  • Tell them about your needs, including spiritually, emotionally, physically, and mentally. How can your healthcare team meet these when: 
  • Explaining your diagnosis and prognosis: 
  • Do they sugarcoat or “give it to you straight” based on what you told them about how you want to receive the information? 
  • Do they give all the details or only the “need to know” info? 
  • Do they communicate with you in a way that you understand? 
  • Do they give you resources to further educate yourself with?

Choosing your treatment options: 

Do they give you choices based only on what they know, or do they take into consideration research that you’ve done on various options, clinical trials, etc? 

Do they help with options based on what your insurance covers? 

During the treatment process: 

  • Are they readily available (or at least within 48 hours) to answer questions? 
  • Do they explain the process as it continues (ie. next steps)? 
  • Do they check on you to see how you’re doing? 

After treatment ends: 

  • Do they explain next steps? 
  • How often to get blood work, scans, routine appointments? 
  • Do they provide a survivorship care plan? 

All of this work that we do as patients goes hand in hand with how we want to be treated by our healthcare team. As we empower ourselves, we empower them too, and there’s nothing better than a great team that’s on the same page. 

Coming Into Your Own: Receiving Support as an AYA Cancer Patient

When I was diagnosed with thyroid cancer in 2017 and again in 2021, I wasn’t told about the vast amount of online and in-person support groups or social media tools that were available, much less the Life with Cancer program at the hospital I was treated at. Instead, I found out about them when I decided to be brave and share my story on Instagram and Facebook and prayed for support and positive feedback. And once I did share my story, a whole new world opened up to me. I’m not talking about living as a survivor for the rest of my life, but rather the new family and community of shared experiences, extensive knowledge, and ultimately, the best support I could ask for. 

Adolescents and young adults (AYAs) are often placed into two buckets: they’re either young enough to be placed with pediatrics or old enough to be treated as a full-fledged adult. However, that’s not the reality. As AYAs, we face a lot more than one would think. Maybe we’re in high school or graduating and about to attend college. We’re developing and strengthening relationships with friends and family, and perhaps a significant other. We might be on our parent’s insurance and have no idea how to navigate the stack of medical bills that come with treatment. We have a lot of unmet needs that the healthcare industry is only starting to meet. That’s where social media comes in to help with cancer survivorship. After all, it’s not a “one and done” thing. 

Below are a few social media platforms and support groups/organizations I have found to be incredibly helpful, specifically for AYAs:

  • Facebook – support groups are available for every cancer, and even variants of cancer. I have found that they provide a safe space for asking questions about symptoms, medications, what to expect during and after treatment, etc. (And, of course, venting!) 
  • Instagram – As the saying goes, “A picture is worth a thousand words.” While this platform is usually a highlight reel, showing the rawness of what we’re going through can be very empowering 
  • Twitter – Here, you can find tweet chats, patient advocates, healthcare organizations, and healthcare professionals (doctors, nurses, etc.). Nothing is off-limits! 
  • Pinterest – find recipes for patients going through treatment 
  • Our Odyssey – support group for AYA patients with rare and chronic diseases, including cancer 
  • Stupid Cancer – provides AYA cancer support groups 
  • Elephants and Tea – AYA cancer support group 
  • Lacuna Loft – AYA cancer support group 
  • Cancer and Careers – helps with getting back into and/or leaving the workforce; discusses disability rights 

Guiding the Cancer Community: What It Means to be a Patient Leader

We all have leaders we look up to, whether it be a friend, family member, mentor, or coach. In the patient community, we also have people we look up to who are making waves in the cancer advocacy world. But what does it mean to be a leader and/or an influencer? What qualities does this person have? How active are they in different communities and social media platforms? 

There’s power in sharing your story, and that’s one of the most crucial ways in becoming a patient leader. However, many of us are scared to share. I know I was when I got my first diagnosis, and then my second. Questions I asked myself were, “What will people think of me and/or what will they say,” and “Will I receive support?” When I gathered the courage, I posted my first picture on Instagram and then shared it on Facebook. The amount of support I received from family and friends, including friends I hadn’t heard from in years, was overwhelming. So, I opened up and began to share more. I knew my story was unique being a 27-year-old (adolescent and young adult [AYA]) thyroid cancer patient (a rare cancer) who was working full-time and putting myself through graduate school. So, I decided to share it in whatever way I could, and if I was told, “No, thank you,” I kept looking until I heard “Yes, we’d love to share your story!” again and again.  

As an active member of the cancer patient community, I have had numerous opportunities to identify myself as a patient leader and share my story, as well as my point of view on different assets of healthcare, in multiple formats. I measure my own success by the number of people I impact with my advocacy, whether it’s in a small or large way. While this is not always known and/or cannot always be seen, I know that I’m at least helping and/or impacting one person with whatever I tweet, blog, share a video, or speak on a podcast about, which can then be shared with others. 

So how can you get started in becoming a patient leader? Here are some suggestions: 

  • Share your story on social media platforms, including Instagram and Facebook 
  • This may include on your personal page as well as support groups 
  • Participate in tweet chats dedicated to specific topics you’re interested in, including #patientchat. Use the website, Symplur, to find relevant healthcare topics that are trending 
  • Look for cancer and healthcare-related podcasts. Email them to ask if they’re accepting guests 
  • Look for cancer and/or healthcare-related journals and blogs. Ask if they’re accepting guest submissions 
  • Network with other patient leaders and ask how they got started and what resources they used/are currently using 

Finally, remember there’s no “right” way to lead. We’re all patients with our own unique stories. Whichever way you decide to share it, know that you’re helping someone not feel so alone. That’s what a real leader is to me. 

Survivor or Surviving? Deciphering the Words Used to Describe Cancer Patients

National Cancer Survivors Day is a day to be celebrated by all cancer patients, whether you were just diagnosed or you’re well into remission. But what if you’ve faced cancer more than once and had to “keep surviving” because it either came back (termed recurrent) or it didn’t respond to treatment (termed refractory)? Does the connotation of the word “survivor” change? 

I had always considered myself a survivor. I always had a positive, but stable, tumor marker that “would never get to ‘0’ because some patients don’t,” or “it would take a few years to see a drop.” I continued to have clear scans for the next 3 years, but a month after my 4th “cancerversary,” it became clear why I still had a positive marker. Not all of my cancer had responded to radiation and was now making itself known by being a bright, solid lymph node on the screen of my annual scan. Ultimately, I was treated and my tumor marker went down. Having to face this twice, however, somewhat changes the script in my mind of being a “survivor,” to simply “surviving,” as I await the next time this happens. 

As a cancer patient, I have always told other patients that half the battle is your mental attitude. As survivors, we’re not always positive, though, and that may be seen as “not being thankful.” “Didn’t you survive cancer,” some will say, “aren’t you thankful for that?” To them I would yes, but surviving is so much more than being in remission no matter how many times you face it. 

As a 2-time cancer patient who is simply surviving and taking it day by day, it’s more than what the treatment has done in helping lower that marker. It’s the negative sides of treatment that aren’t displayed across social media, the sadness that I feel after having a chronic and rare disease more than once, a disease that said “not so fast” to radiation, and the grief of the burden I feel I have placed twice on my friends and family.  

As this special day is celebrated, know that some patients don’t feel like they’re “survivors;” they’re simply trying to make it through the day, fighting emotionally, physically, and mentally to keep going. 

Embracing Telehealth: Protecting Our Data in a Medical Revolution

The world changed when the pandemic came upon us, and so did healthcare. Telehealth visits with our care teams were available, but not as prevalent as they are now. We could message our doctors via secure patient portals or call a nurse and ask for advice. However, with the introduction of video, as well as new devices and apps, how is our privacy as patients affected? 

Telehealth can be defined as “the use of electronic information and telecommunications technologies to support long-distance clinical health care, patient and professional health-related education, public health and health administration.” The majority of us have now had a telehealth visit with one of our doctors via video or phone. They have seen into our lives at home, and we may have seen into theirs. While this can make for a personal, more intimate encounter, we also have to think of privacy. According to the Department of Health and Human Services, the Office of Civil Rights (OCR), which is responsible for enforcing Health Insurance Portability and Accountability Act (HIPAA) regulations, “will not impose penalties for noncompliance with the regulatory requirements …against covered health care providers in connection with the good faith provision of telehealth during the COVID-19 nationwide public health emergency.” What this means is that providers may use video-conferencing services, including Zoom, Apple Facetime, Skype, etc., without risking noncompliance under HIPAA. Therefore, it is up to the patient to review the privacy policy(ies) of the software being used. 

Additionally, recording these visits for our own personal use to listen to later and/or share with family members and caregivers may come into play just as if it were a regular in-person visit. But is this legal? Each state has its own statute that varies on whether one or two parties must consent (single-party vs. all-party jurisdictions). As of 2020, 39 out of 50 states as well as the District of Columbia are single-party jurisdictions where only one party has to consent. The remaining 11 states (California, California, Florida, Illinois, Maryland, Massachusetts, Michigan, Montana, New Hampshire, Oregon, Pennsylvania, and Washington) require both the patient and the healthcare provider to consent, and failing to ask for permission is considered a felony. Additionally, HIPAA does not extend to any recordings made by the patient. 

What about the use of apps? There are more than 300,000 health-related apps on the market today, with a 37% increase in usage since the pandemic began, especially in the area of mental health. With apps for everything from tracking our weight and heartbeat to counting the number of steps we take and the hours of sleep we get, it’s hard not to interact with one of these apps to streamline our lives and make them a little simpler. When it comes to the collection of data, however, how do we know what’s protected under HIPAA? Covered entities under HIPAA include healthcare clearinghouses, most healthcare providers, and health plans. However, if an organization is creating an app on behalf of a covered entity (or one of the covered entity’s contractors), they are considered a business associate, meaning they must comply with HIPAA rules and regulations. This helpful website provides different scenarios on whether or not an organization would be covered. This means that we, as patients, must be cautious in what types of data are being collected and how it might be used, which can usually be found in an app’s privacy agreement or policy. 

This also extends to use of wearable devices, including FitBits, Apple Watches, glucose monitors, and biosensors that collect patient-generated health data. According to a Gallup poll conducted at the end of 2019, 19% of U.S. adults wore a wearable fitness tracker, and a 2019 Washington Post article reported more than 3 million consumers wore a medical alert device. But how is this data regulated? When we collect data for our own purposes, the data does not fall under HIPAA regulations. However, should a healthcare provider ask a patient to submit data from that device and integrate it into their organization’s EHR system, a covered entity, it becomes protected by HIPAA. 

In conclusion, is telemedicine safe? The quick answer is yes and no. In an article released by the Patient Safety Network of the Agency for Healthcare Research and Quality, two physicians noted that “Studies have shown that telemedicine promotes continuity of care, decreases the cost of care, and improves patient self-management and overall clinical outcomes.” However, new technologies present new challenges that have to be worked through. This means that more research needs to be conducted and improvement processes be put in place to ensure protection of patient data. In the meantime, here are some safeguards healthcare organizations may put into place to establish peace of mind for patients: 

  • Be aware of updates from the OCR related to HIPAA 
  • Train providers and staff on policies, practices, and protocols for using telehealth services 
  • Make sure that your telemedicine portal confirms the security of patient data through the use of incident reporting, monitoring of security events, and strong levels of encryptions 
  • Have a strong authentication method, preferably two-factor 
  • Create a detailed audit log of user logins and meeting connections 

Care on the Rise: A Look at 2021 Healthcare Trends 

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. 

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

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: Ages ≥ 18 years 
  • Pfizer-BioNTech: Ages ≥ 16 years
  • Janssen (Johnson & Johnson): Ages ≥ 18 years 

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

  • Moderna: 2 shots, 28 days apart 
  • Pfizer-BioNTech: 2 shots, 21 days apart 
  • Janssen (Johnson & Johnson): 1 shot  

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.cdc.gov/coronavirus/2019-ncov/vaccines/expect/after.html
  4. 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

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?”

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 Caregiver Impact: A Vital Part of Healthcare

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 […]

Empowering Ourselves Forward: Applying Skills to Our Cancer Journey

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

The Power of the PEN Network Manager Program

I never dreamed of being a patient advocate, but then again, I never dreamed of receiving a cancer diagnosis, either. When I was diagnosed with thyroid cancer in January 2017, I didn’t have any symptoms. I was told I had the “good” cancer or “the cancer to get if you had to be diagnosed with one” by my doctors. I took this information to heart, and accepted that cancer was now a part of my life, and there wasn’t anything I could do about it.

It wasn’t until I ended my treatment, when I declared myself a survivor, that I realized I was completely wrong. I recognized there were choices I could have made regarding my treatment plan and there were still opportunities to take charge in how I was treated as a patient. Enter patient advocacy in the cancer world.

Everyone has a story, no patient or cancer is the same. We each have our own unique experience of how we move through the healthcare system beginning the day we’re diagnosed with the “C” word. I knew my story was unique because I was an AYA patient, or an adolescent and young adult, I was working full-time, and I was in graduate school. I dreamt of being published on places other than social media. I wanted an outlet where I was free to share my side of the story without having to hold back. A place where I could share not only the ups and downs of my journey, but my own insights of what it was like to be a young cancer patient. A place where I could advocate for other thyroid cancer patients – let them know what to expect, the questions they should ask of their care team, and how to best take care of themselves. Enter the Patient Empowerment Network.

Patient Empowerment Network (PEN) is an advocacy organization for cancer patients whose “mission is to fortify 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 with receiving the best, most personalized care available.” I discovered them through one of their tweet chats on Twitter using the hashtag #patientchat. I immediately reached out to see how I could get involved. Leadership discussed their strategic vision of having “managers” for different cancers that would create and curate content to educate other cancer patients and help them feel empowered. I was honored when I was told that I would pilot this program as the Thyroid Cancer Network Manager, and my content would be read and shared by others.

The PEN Network Manager program officially launched in March 2020 with the goal “to support health communities around important topics and provide navigation for the path to empowerment. Through various mediums, social media platforms and content formats, network managers develop specific messages, seek out resources and contribute to amplifying the needs of specific health communities via guidance of an established editorial calendar.” For example, I’ve had the opportunity to write a variety of blog posts and participate in tweet chats on a number of different topics, including resilience, health literacy, telehealth, and what it’s like to be an adolescent and young adult (AYA) with cancer. It has been my greatest privilege to connect with other patients through this content, inspiring them to be their own advocate.

To find PEN’s current team of network managers, visit https://powerfulpatients.org/about/#networkmanagers. Clicking on each person’s picture will bring you to their bio as well as content they have created, including recipe guides, interviews, comedy sketches, infographics, and more. Note also that each manager has a personal PEN email that you can use to contact them. PEN managers thrive on encouraging patients and their caregivers to feel more confident in voicing concerns and communicating with their healthcare team, and ultimately empower them to become advocates for themselves and their loved ones.

Joining PEN’s network of cancer managers has truly been inspiring. Although we’re all across the world, conversing with them via email and Zoom chats and hearing their stories and thoughts of how to resonate with more patients is what feeds my soul. PEN is constantly growing, with their goal of representing all cancers. For more information on how you can get involved, please contact Nykema, PEN’s Network Manager Coordinator, at kema@powerfulpatients.org.


As a caregiver and Care Partner Network Manager with PEN, I constantly search for practical information to use and pass along to those I support. I offer support by listening and providing solutions to empower caregivers to improve their resilience. – Sherea


 

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

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

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.