Everything Changes - The Guide to Young Adult Cancer

By Jackie B-F

Thyroid cancer is referred to as the “good cancer” to have.  Treatment generally involves surgery followed by radioactive iodine, and cure rates for the disease are incredibly high.  After surgery, the only drugs I took were my daily hormones and a lonely round of radioactive iodine.

Less than a month after learning I was in remission, I joined a young adult cancer support group where almost everyone but me had been treated with a stem cell transplant.  My week and a half of radioactive quarantine paled in comparison to their experiences, and I felt that I wasn’t part of “the cancer club.”  I was reminded both how lucky I was and how alone I still felt, even among other young adults with cancer.

Since then, I have become active with a few young adult cancer advocacy and outdoors organizations. Unlike like the support group, participating in these organizations has affirmed my experiences as a thyroid cancer patient.  When other cancer survivors comment, “At least you got the good cancer,” I explain that my experiences haven’t been so easy and no cancer is a “good cancer.”  I went through treatment with co-morbid health issues, poor health insurance, and while living across the country from my family.  When I speak about the quarantine period required with radioactive iodine, other cancer survivors commend me for doing it all alone, and in some ways this is my right of passage into the cancer club.

It was during campfire on a First Descents trip with other young adult cancer patients that I realized my story is worthy of telling.  As I listened to other survivors whose diagnoses covered a wide spectrum, I understood that I shared in their stories.  On the most basic level, young adults with cancer know something that our non-cancer friends do not.  Many of us know what it’s like to live in a hospital, to battle insurance, and to feel isolated by a diagnosis.  Thyroid cancer patients are no different in that we too may fear recurrence, feel lonely, and are unsure about the future.  At the end of the day, regardless of our cancer type, we are all still young adults with cancer and this community is too small to have any outsiders.

For thyroid cancer patients, do you feel like a member of the ‘cancer club’?  If you have another cancer diagnosis, have you ever felt like an outsider in the young adult cancer community?

Read about life with thyroid cancer in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Thyrogen is a damn expensive shot (not always covered by insurance) that simulates the experience of being hypothyroid and allows thyroid cancer patients to undergo full body scans, and sometimes even treatment, while still on their hormones. I have used thyrogen and it is remarkable. While on thyrogen I was able to work and function as a normal human being. It was heaven compared to the other times I had gone hypo without thyrogen and was so fatigued I felt like my marrow hurt, my hands went in and out of paralysis, and I could not physically take care of myself.

So, you can imagine my concern when I learned the FDA announced this week that due to operational manufacturing problems, Genzyme will have to halt production of thyrogen. The injection will be limited to patients whose doctors deem it “medically necessary.” Here is what medical necessity is based on:

1. Patients undergoing initial radioiodine ablation of thyroid tissue remnants, post-thyroidectomy, deemed to be at significantly increased risk of side-effects/complications from undergoing thyroid hormone withdrawal.

2. Follow-up testing of patients considered high risk for thyroid cancer recurrence (those with 1. macroscopic tumor invasion, 2. incomplete tumor resection, 3. distant metastases, and possibly 4. thyroglobulinemia out of proportion to what is seen on the post‑treatment scan) and who have unmeasurable basal thyroglobulin (Tg) levels and are deemed to be at significantly increased risk of side-effects/complications from undergoing thyroid hormone withdrawal.

The FDA has complete information listed here about what qualifies as increased risk of side-effects and complications. If you are concerned about obtaining thyrogen, read the linked info, print it out, take notes, and discuss it with your doctor.

Have you ever gone hypo for full body scans or radioactive iodine treatment? Have you ever used thyrogen before?

To learn more about thyroid cancer, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Was it because I was twenty-seven, a woman, or both that my doctors doubted my capacity to participate in serious dialogue about my cancer? They presented me with only the thinnest shreds of pre-digested information about my care. I played a constant charade to glean from them answers that reflected the complexity of my disease. My greatest asset: my InterArts degree in theater and choreography.

Acting classes taught me how to build a facade. I held back tears instead of bawling. I straightened my spine with confidence instead of slumping in defeat with the news of recurrence after recurrence. Employing gripping, direct eye contact, I forced my doctors to focus on me instead of shuffling papers.

A quick improviser, I read and responded to my surgeon and endocrinologist in a flash, returning their comments with complex questions. I packed rapid-fire dialogue into my five-minute appointments, the clock no longer an excuse for their Patient-101 spiels that were rungs below my level of medical comprehension.

Abandoning the role of dumbed-down patient, I favored playing a mentee eager to learn from my doctors. I changed my costume accordingly. While I preferred the snuggly garb of hoodies and sweats that accommodated my cancer lethargy, I instead wore skirts, v-neck sweaters, and makeup.

As I perfected my charade, the time, attention, and intelligent answers I received from my doctors increased. My surgeon started joking that he was going to make me his fellow and take me on rounds.

I began to wonder if I was subtly whoring myself to my doctors to get the care and consideration I deserved. They were all men. My legs are ridiculously long and I look pretty hot in a skirt. Would I have succeeded if I were overweight or wore my favorite Old Navy fleece sweats? And, if my doctors were women would my tactics still work?

When I spoke about my findings from studies I researched on Pub Med, I sandwiched my statements between heavy doses of wit and charm. Did my doctors’ male patients have to play the ditz game to camouflage their smarts?

Over the past ten-years, my doctors and I have often changed the course of my treatment based on rational problem solving ideas I presented to them that were frequently in opposition to their initial orders. I’m proud of the care I’ve received. It wasn’t always handed to me. I worked hard for it, falling apart tired to the bone when I came home from my appointments. Am I any less proud because of the tactics I used? Not at all. I’ll leave that shame for my doctors.

Have you used tactics to get your doctors to pay more attention to you or answer your questions on an in-depth level?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how other young patients manage appointments and hospital stays.