30 Stories in 30 Days
September is Thyroid Cancer Awareness Month. For the next 4 weeks, we will post stories written by thyroid cancer survivors, caregivers and friends for our 30 Stories in 30 Days campaign. We hope their perspectives and insight will help others along their journey.
I’m writing on behalf of thyroid cancer awareness month coming up in September and on behalf of my friend Maryanne Boniello. She was one of THANC’s Faces of Courage and has done a couple of videos for the organization. She lost her battle with thyroid cancer in March 2018. What you may not know about Maryanne is that in addition to being part of THANC, she also helped admin a group on Facebook for those of us facing an “incurable” thyroid cancer diagnosis. My other co-admin Barry Hollander was a journalism professor at University of Atlanta and passed away in January. They both helped admin the group almost since its inception 5 years ago until the time of their deaths.
I was diagnosed with thyroid cancer initially at the age of 29. At the age of 31 I was told I was resistant to RAI and would most likely never be completely cured. What I’ve learned from not only admin’ing that group but from being the last surviving original admin, is that thyroid cancer doesn’t discriminate. As much as they would like to have an age guideline to stage us, that guideline means very little to those of us dealing with an “incurable” thyroid cancer diagnosis. Young people get incurable metastases right alongside older people. I also know that we are the patients that are swept under the rug of an otherwise treatable and curable type of cancer. What they leave out of thyroid cancer statistics is that up to 30% of us will have a recurrence, and only half of that 30% will be completely cured of thyroid cancer. While yes, only roughly 5% die of thyroid cancer, that leaves up to 15% living with incurable disease. That is a reality of thyroid cancer that not only needs to be acknowledged and addressed, but it needs a treatment!
There shouldn’t be 15% of us left to flap and spin in the breeze. And the cold hard reality is that the number could be much lower if doctors were more thorough and took thyroid cancer more seriously from the start. A high survival rate does NOT mean that thyroid cancer does NOT need support or proper follow up! I urge everyone – young and old to check their necks in the month of September and ongoing! And I urge medical professionals to start addressing thyroid cancer as a serious disease! Don’t assume that we will all be so easily treated and cured! Doctors think they’re being encouraging and supportive calling thyroid cancer the “good cancer”, the “best” cancer to have, but they don’t realize how demeaning and minimalizing those words can be. Especially to those of us who are in the 15% with incurable thyroid cancer. Maryanne didn’t suffer and die from a “good cancer”.