A thyroid cancer diagnosis has a strange reputation: It's cancer, but with a near 100 percent survival rate when caught in the early stages, it's one of the "good" cancers, as many doctors and even other survivors will tell you.
But Alan Ho, M.D., Ph.D., thinks that categorization is a common misunderstanding of people who have never had thyroid cancer nor treated it. Ho is a medical oncologist at Memorial Sloan Kettering Cancer Center who specializes in malignancies like thyroid cancer. In a phone call, he told HuffPost that focusing on the cancer's "excellent" survival rate eclipses the hardships patients go through in their treatment and lifelong maintenance of the disease.
"You can recognize some of the positives about the survival numbers for thyroid, but that can't allow us to be dismissive of the true hardships and costs that patients have to go through," said Ho. Like all cancers, there isn't just one type of thyroid cancer, which means there isn't one type of cure. Treatment can include surgery, radiation (usually radioactive iodine treatment), chemotherapy and hormone therapy. None of these therapies is a walk in the park; surgery has low risks of bleeding, infection and nerve damage; radiation can mess with thyroid hormone levels; and, of course, chemotherapy has a whole host of serious side effects.
Often, explained Ho, surviving thyroid cancer means actually living with the cancer for the rest of one's life. With that comes frequent scans and screenings, daily medications that need to be monitored and, of course, fear and anxiety that the cancer may return. Recurrence can occur in about 10 to 30 percent of thyroid cancer patients and can take place 10 to 20 years after treatment.
A common treatment for thyroid cancer is to remove the thyroid, which is a gland that produces hormones essential to bodily function. To replace those hormones, survivors need to be on lifetime thyroid hormone replacement therapy -- usually a daily pill. Ho notes that some doctors might prescribe higher than usual levels of the hormone replacement in order to keep cancer at bay, but with the therapy come possible side effects like osteoporosis or even cardiac arrhythmia. Taken all together, said Ho, the hardships of surviving and dealing with thyroid cancer are significant.
"Especially for this disease, the survival numbers don't really tell the entire story about what patients have to go through," Ho concluded.
A lifetime of thyroid replacement therapy and vigilance against returning cancer has certainly taken its toll on Gary Bloom, 53, of Olney, Maryland. Bloom is a papillary thyroid cancer survivor and co-founder and executive director of the non-profit Thyroid Cancer Survivors' Association (ThyCa). It's been almost 20 years since his initial diagnosis, and in his lifetime he's had three surgeries and five radioactive iodine treatments. His cancer has also returned once. But even though his cancer is no longer a daily worry for Bloom, those years of treatments and tests and a secondary cancer diagnosis have deeply affected him.
"When it's time for my check up, all of a sudden the anxiety and reality of being a cancer survivor comes back," Bloom told HuffPost. "The anxiety is real and is predicated on the fact that thyroid cancer does recur, even 20, 30 years out." Bloom has also recently readjusted his maintenance medication, and he confessed he's "now not doing as well."
"Most of us will be monitored for a lifetime after we've been diagnosed and treated," he said. "I meet many people who do not thrive on their medication."
To help other survivors cope with the lifetime of maintenance, Bloom helped start the ThyCa organization to serve as a forum for thyroid patients to support each other and to provide free educational material to the newly diagnosed and resources to help survivors maintain their health. This long-term perspective is necessary precisely because there are so many thyroid cancer survivors. But it's not enough to simply live. Lifetime maintenance of thyroid cancer can come with exhaustion, memory issues, hair loss and a cognitive "fuzziness" as a result of the medication, said Bloom.
Ho also recognizes that survival isn't the entire story for thyroid cancer patients. He's currently leading an international study to see if he can increase the percentage of patients whose thyroid cancer is completely eliminated in the first round of treatment. Doing so would cut down on subsequent doctor visits, monitoring and blood work, which would in turn ease survivors' psychological burden, he explained.
"A more balanced view would be to say, 'Yes, there are certainly many other malignancies that have much worse outcomes in terms of survival,'" said Ho. "But all of these cancers have associated with them their own costs with regards to the treatments."
"We don't see cancer as a competition from disease to disease," Bloom agreed. "The only competition we would see is against the disease -- all of us as survivors are trying to live."