Tuesday, February 10, 2015

Do Thyroid Cancer Patients Get Off Really Easy?


Updated February 03, 2015.
At the Huffington Post, cancer survivor and social worker Cindy Finch wrote a piece, published on January 29, 2015, and revised February 2, 2015, called The 6 Injustices of Cancer (revised version). Finch outlined these six injustices, focusing on issues that many cancer survivors face, in terms of lack of understanding and trauma.
In the original version, which you can read online at the Internet Archive Wayback Machine, number 5 was "Some cancer patients get off really easy." She then goes on to say:
"I've heard it a hundred times, 'I'm a cancer survivor, too.' 'Oh, really? What type of cancer did you have and what was your treatment?' 'Oh, I had thyroid cancer and had to take a radioactive pill for 30 days then I was all better.'"
Later in the article, she says: "Some cancers are more easily treated with a small surgery or a little pill."
After that post was originally published, the thyroid cancer patient community decided that they would not let Finch "get off easy" for her dismissive attitude. Finch received a strongly negative response, including more than 100 comments, most of them criticizing her insensitive attitude toward thyroid cancer and its survivors. Subsequently, she updated and edited the article, removing the comment about thyroid cancer, but leaving the comment about the "small surgery or a little pill," which seems to still refer to thyroid cancer.
Finch's update of the article also features an apology, which includes the following statement:
My intention was to write an blog that people could relate to about the frustrations and hardships of having cancer. I didn't mean to belittle anyone on a cancer journey, and it was an unfortunate choice of wording when I used thyroid cancer as an example. Your comments have made me see. I'm so sorry I didn't see before.
While Finch's edit and apology are appreciated, her initial attitude points to two common misconceptions about thyroid cancer.
First, it's sad to see that a "Professional Cancer Survivor" - as Finch identifies herself - could be so misinformed about the treatment for thyroid cancer, and mischaracterize it so thoroughly. Proper thyroid cancer treatment is NOT to "take a radioactive pill for 30 days" and then "all is better." Rather, diagnosis and treatment of of thyroid cancer typically involves:
  • Blood testing
  • Ultrasound testing
  • A radioactive uptake scan
  • A fine needle aspiration (FNA) biopsy of the thyroid gland
  • Thyroidectomy -- surgery to remove the thyroid gland - and sometimes a neck dissection that also removes potentially cancerous lymph nodes. Thyroid surgery is not a "small surgery" -- it requires anesthesia, surgical drains, and hospitalization.
  • Recuperation from thyroid surgery, and a visible scar on the neck
  • A period following the surgery where patients have no thyroid function, but do not take any thyroid hormone replacement, rendering them profoundly hypothyroid. This period of hypothyroidism - which usually lasts weeks -- can cause extreme fatigue, cognitive problems, weight gain, depression, and impairment of reflexes to the extent that driving is not even recommended.
  • Treatment with radioactive iodine, which requires several days to a week of isolation from family, children and pets
  • A lifetime of subsequent hypothyroidism, including thyroid hormone replacement medication to replace the missing hormone produced by the gland. Even with thyroid hormone replacement medication, some patients still have continuing symptoms, including fatigue, weight gain, fertility problems, depression, low sex drive, hair loss, and many other issues.
  • Need for regular followup, which includes several weeks of a low-iodine diet, withdrawal from thyroid hormone (going hypothyroid) for some patients along with the resulting symptoms, followed by a scan for thyroid cancer recurrence.
  • Increased risk of secondary cancers, and living with the risk of thyroid cancer recurrence.
Second, thyroid patients are constantly told that theirs is the "good cancer," the "easy cancer," and that thyroid cancer patients "get off easy," as Finch initially said.
Even for someone with early stage small papillary and follicular thyroid cancer -- which has a good prognosis -- going through all of the above diagnostic procedures, surgery, followup, and lifelong hypothyroidism treatment is far from good or easy. It can be traumatic and life-changing. And patients with undifferentiated thyroid cancers, medullary cancer, and anaplastic thyroid cancer can have a very difficult road, with an uncertain course that is grueling.
One person who understood that thyroid cancer was not "the good cancer" was Ric Blake. I had the great privilege of knowing Ric, a co-founder of the Thyroid Cancer Survivors' Association (ThyCa). Ric was diagnosed with a type of thyroid cancer that was unresponsive to radioactive iodine, and his cancer was anything but easy, continuing to reappear, grow and metastasize over more than ten years. Living with a diagnosis of terminal thyroid cancer, he experienced periods of great pain and suffering, including having a tracheostomy, and metastasis to his bones.
Despite his health challenges, Ric focused his efforts on founding and building ThyCa group, which was created in 1995, and now has an annual conference for thyroid cancer suvivors and caregivers, and provides support to thyroid cancer patients around the nation and the world. Ric also connected with other cancer patients to help develop better palliative care and hospice options for terminally ill cancer patients. Sadly, we lost Ric in August of 2011 -- you can read a Tribute to Ric Blake I wrote at the time. But the efforts he made to raise awareness of thyroid cancer, and provide meaningful support to thyroid cancer patients, continues.
I know, were Ric still with us, he would have had a few choice words for Finch's original blog post. At the same time, I also know he would have welcomed her change of heart.
So, in the spirit of Ric Blake and his efforts to expand awareness of thyroid cancer and support for its patients, I would like to thank Cindy Finch for hearing the pain and frustration of the thyroid cancer community, and for apologizing for contributing to the misinformation, misunderstanding and marginalization of thyroid cancer.
But above all, I would like to thank the thyroid cancer patients who spoke up and commented on Ms. Finch's original article, helping to educate Finch and her readers regarding the reality of life with thyroid cancer, and sharing their own stories and experiences.

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