Diagnoses are increasing at a rate faster than any other malignancy in the US—56,870 new cases each year, up a whopping 200 percent from the 1970s—and it’s still viewed as a get out of jail free card in the cancer world. It’s a mindset that’s deeply frustrating for the overwhelming majority of thyroid cancer patients, including Jill Gurfinkel, my best friend from college.
Jill has lost so much during her five-year fight with the disease – including her thyroid, for starters. Her highly successful career as a litigator, her once enviable stamina, her ability to juggle multiple, dueling responsibilities effortlessly—and in heels—are all gone, despite her “easy cancer” diagnosis. The truth is, the reality is much different than what is perceived by the public.
Here are the 8 Realities of Thyroid Cancer:
1. It’s not the “good cancer.” Jill’s doctor held her head down as he inserted eight long needles into her neck to biopsy her two tumors. No anesthetic was involved, and that was just the beginning of her personal hell. A week later, her neck was surgically sliced to remove the right lobe of her thyroid.
2. It changes everything. When the pathology results came back, they weren’t “good.” One tumor was a papillary carcinoma and the other larger tumor was a rare, aggressive form of thyroid cancer called Hurthle cell carcinoma. It had to come out— stat. She was back in the operating room the following morning for the removal of the left lobe of her thyroid.
She lost a parathyroid gland and ended up with a paralyzed vocal cord following her second surgery. She could barely breathe without coughing. She couldn’t drink without choking. And, worse of all, she couldn’t speak. (I was most devastated by this horrifying side effect, as I need Jill’s voice to function on most days.)
3. The treatment is definitely not spa treatment. How does a low-iodine diet in preparation for liquid radiation after two surgeries sound? Jill had to have radioactive iodine ablation to eradicate remnant thyroid tissue. Cloaked in protective gear, she drank a metallic tasting liquid out of a lead container and was forced to remain in isolation for five days afterwards. This meant no encouraging hugs from her son, no soup deliveries from her sister, and no contact with her boyfriend. She was alone, exhausted, and extremely nauseous. Her jaw and cheeks ached, but nothing like they would months after treatment when a stone in her salivary ducts caused recurrent parotid gland infections (parotitis). It was excruciatingly painful and a direct effect from having radiation. Now that she does not have a thyroid, infections are much harder for her to fight off. She’s also at risk for secondary cancers and dental problems, among other ailments.
4. It’s not “one and done.” The “take one pill a day and you’ll be OK” fallacy is not the case for many thyroid cancer patients. Jill takes dozens of pills a day, administers her own daily injections, and uses several hormone creams to address the numerous deficiencies, including autoimmune disorders, she has now that she no longer has a thyroid. Every single day is a challenge.
Many spend years trying to figure out the right hormone levels, and suffer debilitating fatigue, depression, adrenal fatigue, cardiac issues, aches, pains, hair loss, brain fog, weight gain, inability to control body temperature, hot flashes, edema, muscle weakness, impaired memory, sex hormone imbalance, anemia, slowed heart rate, palpitations, thinning hair, and menstrual irregularities.
5. Thyroid cancer survivors are misfits. Thyroid cancer survivors are often dismissed by other cancer patients, the medical community, and big budget cancer organizations. Most people just assume that since thyroid cancer is purportedly “treatable” or even “curable,” it doesn’t warrant much attention. Imagine going through what Jill has endured with little support or empathy. Thyroid cancer patients do not get the benefit of heightened awareness, 3-day walks, or funding for research of this increasingly prevalent disease.
6. Better diagnostic tools are desperately needed. The only diagnostic tools available for thyroid cancer don’t always work for patients like Jill. She has blood tests every three to six months plus ultrasounds and body scans to monitor for recurrence, but they are anything but foolproof.
Her type of thyroid cancer, Hurthle cell, does not always uptake iodine, which is necessary for the scans to function properly. The thyroglobulin blood test used to monitor for thyroid cancer doesn’t always detect this kind of cell either, giving her no way of truly knowing if she’s still in remission.
7. Patients die. Many patients with medullary, anaplastic, Hurthle cell carcinoma, follicular and even papillary thyroid cancer are not responsive to standard radioactive ioodine ablation treatment. They endure countless rounds of chemotherapy and radiation and/or multiple surgeries to try to cure their incurable disease. In the U.S. alone, 2,010 people die from thyroid cancer every year.
8. The future is never certain. Even though Jill is an unrelenting optimist who has managed to thrive despite her condition, she will spend the rest of her life wondering if thyroid cancer is lurking somewhere in her body. She will pray her often recurrent subtype gives her enough of a reprieve to watch her son grow up, get married, and have a family of his own. She will struggle with the debilitating physical, emotional, and financial aftermath of a thyroid cancer diagnosis.
And that’s the reality of living with the “good cancer.”