Overcoming the obstacles and (false) stigma of cancer as an Adolescent or Young Adult
by Carly Flumer, Patient Advocate
In January 2017, I was working full-time and was a full-time student in a Master of Science degree program at Boston University in health communication. At 27 years old, I was a healthy, young adult who exercised frequently and ate a relatively healthy diet. I attended all my doctors’ appointments, including my annual physicals.
Let’s step back to 2015, when my primary care provider (PCP) noticed a lump in my throat. He said to keep an eye on it. Fast forward to my next physical in late 2016 when he felt the same lump and suggested an ultrasound. I had no symptoms, so I didn’t think anything of it at the time. It was soon to be the start of a new year with my usual resolutions to remain healthy and happy. I went for my ultrasound the second week of January 2017. The radiologist placed the cold gel on my throat and dragged the wand up and down my neck looking for the lump as well as anything else that appeared suspicious. “Well, there’s definitely something there,” the radiologist said about the lump found by my PCP, “but there’s another spot that looks somewhat suspicious on your thyroid.”
I didn’t know what a thyroid was or what it did. I was given the option to have both areas biopsied or biopsy the lump in the throat and wait to see if the spot on my thyroid grew. I wasn’t taking any chances and had both sites biopsied. “I wouldn’t worry,” the radiologist said, “there’s less than a 10-15% chance that it’s cancer.” Cancer – a word that never crossed my mind. Shortly thereafter, I was diagnosed with stage I, papillary thyroid cancer and my future as a cancer patient had just begun. When I announced my diagnosis to friends and family both in-person and across social media channels, I was surrounded by love and support. Friends who had not been in touch for years wished me well, while closer friends didn’t have a response at all.
My experience as an AYA Patient – dealing with a new life and unanticipated consequences
Adolescent and young adult (AYA) cancer patients typically fall into the age range of 18-39. As the number of patients diagnosed with cancer has been rising over the years, the AYA cancer population has increased as well (more awareness, better diagnostic tools, etc.). As a thyroid cancer patient, I often hear I was diagnosed with the “good” cancer, due to its incredible prognosis (high rates of recovery). At first, I took those words to heart given that I didn’t have symptoms. It wasn’t until I finished treatment when I realized that there is never a good diagnosis, only slightly better or worse diagnosis!.
Certain aspects of having cancer in this young age range makes dealing with cancer much more difficult than later in life. For example, many AYA cancer patients may just be starting undergraduate or graduate school or starting on a career as well as exploring the dating world. In my case, I was four months into my graduate program when the diagnosis came. I was lucky because my classes were online. It would have been another story had I needed to attend classes in a physical classroom, Nonetheless, I still had the daunting task of telling my professors what was happening so that I could get an extension on assignments if need be. I didn’t want or plan to drop out, yet having cancer means rearranging your life and managing multiple commitments (e.g., schoolwork, doctors’ appointments, etc.). Consequently, the fatigue due to treatments and keeping up on classwork made my life extremely wearing. I remember having five doctors’ appointments in one week, which felt crazy to me at the time.
In addition to receiving treatments and dealing with the emotional roller coaster ride, another aspect of cancer that hit me (and other AYA patients) especially hard is financing cancer care. Depending on the type of treatment, including radiation, chemotherapy, immunotherapy, hormone therapy, etc., the costs can add up quickly. With the passing of the Patient Protection and Affordable Care Act, AYAs are allowed to stay on their parents’ plan until their 26th birthday.1 Unfortunately, many Americans are still underinsured or uninsured, and AYAs just getting started in their careers may find it hard to pay off medical bills after their 26th birthday while still in entry-level jobs. Additionally, high-deductible health plans are becoming popular, especially among the younger generations, who do not go to the doctor as often. Therefore, it’s important for AYAs and their parents/caregivers to discuss different treatment options, if available, and their costs.
“Being diagnosed and then stigmatized with a cancer is anything but easy”
On top of costs of treatment, one learns quickly about “hidden costs,” or costs you normally wouldn’t think of as part of cancer care. For example, depending on the extent of the cancer, your care might best be performed at a larger hospital that may be hours away, or even out-of-state – gas or airline fees can rack up quickly. Costs of non-medical home supplies also add up. To prepare for oral radiation, I had to undergo a low-iodine diet for three weeks. This meant consuming food with little to no salt, which is quite difficult as salt is in almost every food product. Scouring the grocery store aisles and reading nutrition labels overall resulted in my buying a lot of organic products at higher costs, so I regularly overspent my grocery budget. Cancer can never be “planned for,” but taking the necessary steps to maintain a healthy lifestyle and visiting the doctor when necessary are proactive approaches for balancing health care costs in the long run.
Even now in survivorship, multiple appointments in a week can be common. Fortunately, my professors understood; I was able to get extensions when I needed them, which gave me the time to reflect and focus on exactly what I wanted to do with my life after graduation. Topics such as healthcare research and healthcare writing for communicators helped me find my passions. I now look to enhance health literacy, research, patient education, and patient-provider communication in the realm of oncology to create better health outcomes. It turned out that having cancer during graduate school helped me apply what I was learning to my journey. Only cancer could have given me this new outlook on life.
While I was going through treatment, I felt like dating wasn’t an option. I already felt like a burden on friends and family, and I wasn’t about to lay heavy news on someone I didn’t know. In survivorship, however, sharing my diagnosis with a potential partner is one of the first things I do so that I would know (sooner rather than later) that a potential partner is okay with my condition and can accept the role of providing empathy and understanding. I recognize that a cancer diagnosis is a hard thing for a partner to hear and process, but life is too short not to be accepted for who you are. Luckily, there are people out there who will do just that. They’ll want to understand your diagnosis, treatment, and side effects. They’ll want to educate themselves so that they can be a stronger advocate. Some may even come to appointments. Not everything has to be shared with a partner, but I believe the more you share, the easier it may be to develop a deeper relationship.
Being diagnosed and then stigmatized with a cancer is anything but easy. One often doesn’t know what they have until it’s gone, and that’s what happened to me when I lost my thyroid. The thyroid plays a huge role in the body, regulating body temperature, heart rate, metabolic rate, muscle and digestive function, brain development, and bone maintenance. Basically, think of any bodily function, and the thyroid plays a role. Without a thyroid, a patient becomes hypothyroid.2 A supplement in the form of T4, a thyroid hormone replacement pill, must be taken daily.3 Without the supplement, the body slowly begins to shut down, which can lead to death. My body now runs cold, so I often keep my residence at sauna-like temperatures. Often, I might be too tired to accomplish as many tasks as I need to during the day. Sometimes I experience brain fog.
Of course, the supplement helps, as that is its role, but finding the right dose to help the body feel “normal” again can be a rollercoaster. I started out on a dose that was explained to me by my surgeon as “simply a guess” based on my age, height, and weight. Only future blood work results measuring the thyroid stimulating hormone (TSH) would determine whether my dose was too low or too high.4 In the time between the first dose of T4 and finding the correct dose, the patient may experience symptoms of hyperthyroidism (nervousness/ anxiety, irritability, increased sweating, difficulty sleeping, increased heart rate, etc.) or hypothyroidism (cold intolerance, fatigue, dry skin, constipation, mood swings, etc.).5 Again, there is no such thing as a “good” cancer.
Advocacy for AYA Patients
Advocacy is a healthy means to share your condition and receive support from others. First (and fortunately), many support groups, both online and in-person, are available for patients with all types of cancers. Doing a quick search on Facebook and/or Google can lead a patient to find new friends who may quickly become their second family or the family that “just gets them.” I didn’t recognize the importance of support groups until I was finished with treatment, as they were not mentioned to me by any physician I previously saw. The benefit of joining different support groups leads to deep connections formed among people of different backgrounds (age, gender, location, race, etc.). From hearing and/ or reading stories and posing questions, one can gain new knowledge. For example, one topic rarely discussed amongst my doctors and me is brain fog. Normally, I see this termed “chemo brain.” Even though I didn’t receive chemotherapy, I still felt “off.” I posed a question to a couple of my thyroid cancer Facebook groups and found that many others confirmed they had experienced the same thing. Knowing that you’re not alone and having others validate your feelings is powerful.
Having cancer is not the same for everyone; each journey has its highs and lows. My experience has motivated me to be an advocate for preventive measures. Take a look at your diet and exercise habits. Are you consuming whole grains, lean meats, fruits, and vegetables, or more processed and fast foods? Are you moving your body in a way that makes you feel good, whether through walking, running, yoga, weightlifting, Pilates, etc. or are you a couch potato? Do you see your doctor regularly or do you not remember the last time you saw them? If there’s one point that sticks out in my mind, it’s to get a routine (annual!) physical. Physicals provide a baseline of your health so your doctors can determine if something is abnormal (my cancer was found as a result of my physical). Don’t stop there, though. Visit the doctor when you’re sick and follow up accordingly, including seeing specialists if needed. Take medication properly as indicated on the label and for the full extent of treatment. Just because you’re feeling better doesn’t mean to stop taking it. Discuss side effects with your doctor if you think a medication isn’t working; don’t give up on it entirely.
Many people said, and continue to say, that I look good or “you don’t look sick.” While I know they mean well, using that phrase is incredibly hurtful. Each cancer patient’s journey is different; therefore, each patient will look different. For example, while not all cancer treatments cause hair loss, it doesn’t mean the journey is any less difficult. Additionally, once treatment ends and remission status is reached, the journey is not over, and emotions still run high. For example, I undergo a scan every year and blood work every six months to see if I have relapsed. I anxiously await the results every time. Friends and family may say, “This is the nth time you’ve done this. Why are you scared?” It’s comments like this that demonstrate a lack of understanding producing feelings of loneliness.
There seems to be a stigma about cancer – patients among people my age (especially males) tend to ignore symptoms as they recur or the lack of response to at-home treatments. Keep in mind that cancer does not discriminate across gender, race, ethnicity, employment, or financial status, etc. You may even have no symptoms as was in my case. Doctors, unfortunately, are seen as a last resort, and sometimes it can be too late for a safe and effective treatment. Of course, it’s not necessary to see a doctor for every problem that arises; some things can heal by themselves over time. It’s the aspect of waiting too long to take care of something that may be detrimental. I am here to say that doctors are there to help you; they have seen it all. It’s much better to take care of it now, rather than look back and wonder why you didn’t take care of it sooner.
Be your own best advocate
It was only a year or so after my diagnosis I realized my place in oncology patient advocacy. As a result of what I went through, I now implore others to advocate for their own health and take care of their bodies. If you are diagnosed with cancer, be your own advocate and, if possible, recruit a caregiver who can be there by your side through the process whether it be for emotional support or to come to appointments. Having a second set of eyes and ears in the doctor’s office can be incredibly beneficial, as we often forget questions we meant to ask. Seek support from a licensed mental health professional, whether it be a psychiatrist, psychologist, or social worker. Join support groups and don’t be afraid to ask questions (everyone is on the journey together!). If there’s one piece of advice I can’t emphasize enough, it’s to not panic. There are plenty of resources to help you, including websites with a plethora of information including the American Cancer Society,6 Cancer Care,7 and the National Cancer Institute.8 Remember, using websites such as WebMD are probably not the best option. If you want assistance in searching for information on your cancer, ask your physician for the most vetted websites. Most importantly, don’t be afraid to ask any question of your physician – they are there for a reason!
Carly Flumer was diagnosed with stage I papillary thyroid cancer at the age of 27. She received her Master’s degree from Boston University in Health Communication and Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.
Support Groups I Love:
- Patient Empowerment Network
- Our Odyssey
- Cancer Care
- Elephants and Tea
- Lacuna Loft
- Smith Center for Healing and the Arts
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