Navigating Thyroid Cancer: Tips from Someone Who’s Been There

So you’ve been diagnosed with the “C” word, specifically thyroid cancer, and now you’re seeing a whole new care team. This usually includes an endocrinologist who specializes in disorders of the endocrine system, including the thyroid. As a patient who has been living with thyroid cancer on and off for the past 5 years, here is a non-exhaustive list of tips about treatment and how to manage, including questions to ask your care team and tips for your appointments as you go along your own cancer journey.

11 Tips for Navigating Thyroid Cancer

  1. Have a good relationship with your endocrinologist, as they will be treating you for life. 
  2. Make sure your values, morals, and opinions are respected as part of the treatment process. The cure isn’t the only part of the cancer journey. 
  3. Ask about different treatment options (i.e. surgical removal). 
  4. Inquire about potential side effects of each treatment and how to mitigate them, especially if you undergo chemotherapy and/or radiation. 
  5. Ask for clarity on medical jargon, such as thyroid-specific blood tests. 
  6. Bring in a list of questions to each appointment. 
  7. If possible, have a caregiver, such as a family member or friend, come with you to each appointment as a second set of eyes and ears. 
  8. Join support groups that are available both online and in-person. 
  9. Utilize your patient portal, if you have one, for messaging your care team, renewing prescriptions, and viewing lab and ultrasound results. 
  10. If you end up having to take synthroid, keep a diary or log of how you feel at each dose to be able to report back to your care team. 
  11. Advocate for yourself if something doesn’t feel right. 

As a patient in a new and very unique environment with a disease you never thought you would get, knowing how to navigate this beautiful, yet terrifying journey is hard. However, if you stick to your values, ask questions, create a strong relationship with your care team, and advocate for yourself, it’ll make the process a lot smoother. 

Psychosocial and Emotional Impact of Cancer: Change on Career Plans

As young cancer patients, we have to endure more than our disease, but the life changes that come with it. One of the changes may be a change in career plans, and this can have a varying psychosocial and emotional impact.

For me, personally, having a cancer diagnosis at the age of 27 vastly changed the direction of where my career was headed. I was working in healthcare already and also attending graduate school, but I didn’t know what kind of role I wanted to have in healthcare when I graduated. Getting cancer during this time and going through a very personal, yet somewhat traumatic experience helped me to realize that my purpose in life is to help other cancer patients. However, it’s not always as clear why we got cancer at the age we did, and how that will continually affect us. There are also no clear-cut rules on whether we should continue working even if we’re going through treatment, whom to tell about our diagnosis, and how, or how best to describe a gap in our resume. Luckily, the Cancer and Careers website has all the answers to some of our biggest questions:

  1. Should I tell my employer?
    • Consider the side effects of treatment, the general law about disclosing, and your environment
      • If you think you’ll need to request a reasonable accommodation or medical leave, you may have to disclose a medical condition but not necessarily the diagnosis
      • Is your company big or small? Do people have close-knit relationships?
      • What are your side effects like and will they affect your daily productivity?
  2. If I need to tell my employer, when do I tell them and whom do I go to?
    • It is best to let the people below know when you and your healthcare team have developed a plan for treatment
      • Your boss – generally you are protected by the ADA if you’ve made your employer aware of a medical condition
      • Human resources department
      • Co-workers, if you feel comfortable
  3. What do I tell them?
    • Tell only as much as you want and prepare ahead of time what information you want to share
    • Tell them what to expect, for example, future absences or even changes in appearance
    • Reassure that you’re still a part of the team!
  4. How do I explain a gap in my resume?
    • Remember that you’re not required to disclose your diagnosis during an application process or interview
    • Know that it is prohibited by law for any recruiter to ask about “health issues” should you choose to use that phrase to explain the gap
    • If your resume, list your skills first, and highlight community or volunteer work, as well as part-time and freelance work

More Resources:

The Basics and “Why They Aren’t The Basics” of Clinical Trials

We’ve all heard about clinical trials, especially with the recent pandemic (for which there are still ongoing trials available!). But it’s not always intuitive on how to find trials, how to enroll in them, what goes into them, and how there still is (and how we can fix!) the lack of diversity in trials despite efforts. Therefore, this blog is specifically dedicated to just that! If you have additional insights, feel free to reach out in the comments or email me at carly@powerfulpatients.org so that this can be updated! 

First, let’s break down what a clinical trial is not. A clinical trial is not a method of care that the healthcare community tries to take discriminatory advantage of. Although it has been that way in the past, especially amongst the African American community, I believe trials are trying to do a better job when it comes to equity and inclusion of multiple races and ethnicities, as well as clear consent. Clinical trials are a way to advance medical sciences and treatment initiatives for patients around the world experiencing the same diseases and conditions that make us vulnerable. Clinical trials aren’t always looking for treatment opportunities, however, some trials are focused on prevention, the feasibility and/or safety of a medical device, or on quality of life. No matter the type of trial, though, there is always something to be learned to enhance healthcare in a number of ways, even if it’s not easily recognizable. 

Doctors sometimes do not mention clinical trials as a treatment option because they feel like they are “giving their patients away.” After all, healthcare is a business, and if a doctor “loses” their patient to a trial, it’s not the most economical option for them. This is another reason why we have to be advocates of our own health and do research.  

Clinical trials can be found doing a quick Google search, on www.clinicaltrials.gov, or by going to a local or national hospital’s website and searching for available trials. Most hospital systems will direct to clinicaltrials.gov if there’s a record for the trial because it contains the most information, including the purpose of the trial, the outcome(s) the investigators are looking for, eligibility criteria, and what will be happening during the trial and for how long. A patient can bring this information to their doctor and ask if it’s appropriate for them. If so, the trial generally lists who and how to contact at the bottom of the record on clinicaltrials.gov or on the hospital’s website. What it doesn’t tell you is if you’ll be compensated for your time, which may hinder trial enrollment. 

Compensation information for a trial, if applicable, can be found in the informed consent document, which is an official document that includes what will happen in a trial and for how long, what the objectives of the study are, compensation information, and the risks/benefits of participation. Compensation in clinical trials is considered a “recruitment incentive,” not necessarily to obscure the risks and/or benefits of a trial. According to the NIH, the FDA doesn’t consider reimbursement for travel, lodging, airfare, and/or parking, but for “their time, inconvenience, discomfort, or some other consideration.” Usually, it’s in the form of a gift card, and “any credit for payment should accrue as the study progresses and not be contingent upon the subject completing the entire study.”   

Given that patients would be paid to participate, does this help break down barriers for vulnerable populations? It may not be enough. Patients are not responsible for routine care costs during a trial if they’re covered under private insurance or Medicare. However, as stated above, patients are not reimbursed for travel, lodging, airfare, and/or parking. Depending on how far the patient has to travel and where, the gas money, much less airfare, and hotel costs could drive up the costs exponentially. This is especially true in major metropolitan areas as opposed to more rural or suburban areas, as there may be more local trial locations such as hospitals and clinics. 

How do we increase diversity in such important potential medical discoveries? The FDA suggests that study sponsors are “encouraged to think about reducing visit frequency, when appropriate, in addition to considering whether flexibility in visit windows is possible and whether electronic communications, such as phone, email, social media platforms, or other digital health technology tools can replace site visits and provide investigators with real-time data.” Tying this advice back to patient compensation, electronic communications replacing in-person could be a game-changer for patients. If Covid hadn’t forced some medical offices to close and offer virtual visits, it couldn’t have come any sooner. Additionally, continue to have clinical trials that are for specific patient populations, as applicable to specific diseases (for example, breast cancer trials for African American men and women). Finally, establish networks in the local community, and go where the patients are. Learn about them. Clinical trial enrollment can only get better if we step out of the board room and into the classroom. 

There’s an App for That…Or There Should Be: Utilizing Technology for Better Health Outcomes

Health literacy has always been a passion project of mine ever since I was diagnosed with cancer. I stand by the notion that plain language and clear communication leads to better health outcomes. However, communicating with our care team isn’t always easy. How many of us have gone into an appointment only to leave the office 10 minutes later, wondering what happened and what our copay went to? Were all of our issues and questions addressed? 

This is where we have to come in as advocates for our own health, and below are a few ways to do this: 

  • Try and focus on one ailment per appointment 
  • Write down a list of questions you want addressed prior to the appointment 
  • Ask questions during the appointment – you are the expert of your body and health 
  • If something doesn’t make sense, ask for the information to be explained in another way. Patients are found to be more compliant if they know: 
    • How to take their medications properly 
    • Why specific blood tests and imaging are ordered (i.e. if they’re necessary) 

How do we keep track of all of this information, though? There are patient portals that keep track of our appointments and records, but those can often be hard to navigate, and they lack the capability of being able to enter our own information (i.e. about how we’re feeling). Additionally, different health systems have different portals, leading not only to lost passwords, but a missed opportunity for integrated healthcare. This is essentially senseless for cancer patients who have to keep track of multiple appointments and medications, all while trying to keep afloat in a system that wasn’t built for patients and their caregivers. 

However, there’s a role technology can play here. I’ve heard of patients carrying around large binders of their records from appointment to appointment, but if we’re being honest, I don’t believe a physician or other member of a patient’s care team is going to take the time to go through it. Instead, utilizing the power of the device that we’re constantly carrying around and looking at may be the way to go (in addition to a smaller folder or journal for those that are comfortable with paper). 

If we think about it, there’s an app for everything, and having an app to keep track of our cancer journey should be no different. What should this app be able to do? Here are a few things that I think are especially important: 

  • Keep track of: 
    • Medications (dosage, picture of what it looks like, how to take it and what to do if you accidentally miss a dose or take more than what is prescribed, ability to refill) 
    • Blood work (results and what they mean [featuring a scale of what’s low vs. normal vs. high], what to ask your doctor about in terms of next steps) 
    • Imaging (results and what they mean, what to ask your doctor in terms of next steps) 
  • Ability to connect with all members of your care team (primary care doctor, oncologist, nurse navigator even if they work in different health systems) 
  • Ability to connect with caregivers and share information with them 
  • A diary to describe daily thoughts, symptoms, and side effects, flagging specific keywords that can alert a member of your care team 
  • A calendar with appointments (date/time, office location, directions) 
  • Tips to assist with mental health (i.e. offering local or national support groups [both virtual and in-person], counseling that accepts insurance and/or is offered on a sliding scale) 
  • Exercise routines featuring different forms of exercise (yoga, pilates, HIIT, weightlifting, playing a sport, walking and running, etc.) based on you’re feeling side effect- and energy-wise 
  • Information about nutrition through the different phases of a cancer journey (pre-treatment vs. in-treatment vs. post-treatment) that includes recipes 
  • Most importantly, all of this information should be in plain language that’s easy to understand in whatever language the patient is most comfortable reading 

Having an app that features all of these capabilities, I believe, would push the needle forward in patient care, not only creating better health outcomes, but a more satisfied patient. What would you add to the list? 

Finding Value in Your Care: Take Action Checklist

1. Am I getting the best care or even offered the best?  

  • Is the care appropriate for my age? My condition?
  • Am I being given more than one option, if at all possible, with the pros and cons explained to me?
  • Is my provider willing to recommend me to a colleague for a second opinion if I feel that I need one?
  • Does my healthcare provider care for me as an individual or do I feel lumped together with other patients?
    • Do I feel comfortable asking questions? 

2. Are the ordered scans and blood work helping me in my care or are they ordered “just because?”

  • Does my provider explain the reasoning behind these orders (i.e. what information we’re looking for, how this will help progression of my care, etc.)?
  • When the results come back:
    • Do I have access to them? If so, are they easy to find?
    • Are they explained to me in a way that makes sense?

3. Is insurance providing me coverage or am I consistently receiving denials/is my provider having to do a peer-to-peer? 

  • Does my coverage make sense?
    • Are providers transparent about how much something may cost?
  • Are terms explained?
  • Can I easily receive access to a care representative?

4. Does my employer offer benefits that fit what I need? 

  • Health insurance 
  • Short-term and long-term disability 
  • Options for FSA and/or HSA accounts 
  • Employee assistance programs 

5. Are the medications that are prescribed working as intended? 

  • Do I understand how to use them correctly? 
  • Do I feel comfortable telling my doctor if I have any side effects and need to switch to something else? 
  • Are they affordable or are there alternatives? 

6. Is a patient portal available and easily accessible? 

  • Is it easy to find what I’m looking for? 
  • What capabilities does the portal have?
    • Can I message my provider?
    • Can I view lab and imaging results?
    • Can I schedule appointments and see upcoming appointments?
    • Can I see visit summaries of previous appointments? 

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

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

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

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

Providers should:

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

Patients should:

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

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 

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.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.