Thyroid Cancer
I share this information in the hope that it might help anyone that might be in the position I found myself thirty years after being diagnosed with thyroid cancer.
It all started when I was about three or four years old and had recurring tonsilitis. This was in the early fifties and there was a reasonably new treatment for this and other ailments...x-ray treatments. These treatments did not resolve the problem and ultimately I had a tonsilectomy.
When I was seventeen years old, spring of 1970, there was a grape sized lump on the side of my neck. It turned out to be thyroid cancer. There are several types of thyroid cancer. My particular type was papillary. There were already some metastasis in my lungs at that time and some lymph nodes. Between 1970 and 1976, I had several surgeries, including a total thyroidectomy and treatment with radioactive iodine.
I was told that the radioactive iodine had "killed" any thyroid cancer that had not been removed surgically. I worried for many years that it wasn't really gone, but in time, I stopped worrying about it, or mostly stopped worrying about it.
Shortly after that first diagnosis, I was started on thyroid medication which I took forever more.
Then in May 2005, I had a breathing crisis that landed me in the emergency room. A CT scan revealed nodules in my lungs. The ER doctor asked about my hystory of cancer and recommended I follow up with a pulmonary doctor. It took until early July 2005 to determine that the thyroid cancer was back with extensive micrometastisis in my lungs.
I learned that there was a blood test that had been available for many, many years (although it had not been available in the early 70's) that would have told us my cancer was back, or had never really been gone. The test is for THYROGLOBULIN. Having had a total thyroidectomy, my level of thyroglobulin should have been less than .4, but the first time they tested me for it in 2005 the level was 191. It peaked at 511.
Thankfully, I live near Houston and was referred to MD Anderson Cancer Center. Because of my extensive and complicated history, the prognosis was grim. I was again treated with radioactive iodine, in September 2005. I go back every six months and for now things are holding steady. They keep me hyper-thyroid to try to supress the cancer which I now understand will never be gone. I experience shortness of breath upon any activity and deal with the side-effects of being hyper-thyroid and short-term memory loss I believe to be from the radioactive iodine.
I never knew that I should have been having regular whole body scans (with a low dose of radioactive iodine) nor did I ever know about the blood test for thyroglobulin. I still don't understand why my primary care physician didn't suggest these tests and it probably goes without saying that I have changed doctors and clinics.
What you need to know:
It all started when I was about three or four years old and had recurring tonsilitis. This was in the early fifties and there was a reasonably new treatment for this and other ailments...x-ray treatments. These treatments did not resolve the problem and ultimately I had a tonsilectomy.
When I was seventeen years old, spring of 1970, there was a grape sized lump on the side of my neck. It turned out to be thyroid cancer. There are several types of thyroid cancer. My particular type was papillary. There were already some metastasis in my lungs at that time and some lymph nodes. Between 1970 and 1976, I had several surgeries, including a total thyroidectomy and treatment with radioactive iodine.
I was told that the radioactive iodine had "killed" any thyroid cancer that had not been removed surgically. I worried for many years that it wasn't really gone, but in time, I stopped worrying about it, or mostly stopped worrying about it.
Shortly after that first diagnosis, I was started on thyroid medication which I took forever more.
Then in May 2005, I had a breathing crisis that landed me in the emergency room. A CT scan revealed nodules in my lungs. The ER doctor asked about my hystory of cancer and recommended I follow up with a pulmonary doctor. It took until early July 2005 to determine that the thyroid cancer was back with extensive micrometastisis in my lungs.
I learned that there was a blood test that had been available for many, many years (although it had not been available in the early 70's) that would have told us my cancer was back, or had never really been gone. The test is for THYROGLOBULIN. Having had a total thyroidectomy, my level of thyroglobulin should have been less than .4, but the first time they tested me for it in 2005 the level was 191. It peaked at 511.
Thankfully, I live near Houston and was referred to MD Anderson Cancer Center. Because of my extensive and complicated history, the prognosis was grim. I was again treated with radioactive iodine, in September 2005. I go back every six months and for now things are holding steady. They keep me hyper-thyroid to try to supress the cancer which I now understand will never be gone. I experience shortness of breath upon any activity and deal with the side-effects of being hyper-thyroid and short-term memory loss I believe to be from the radioactive iodine.
I never knew that I should have been having regular whole body scans (with a low dose of radioactive iodine) nor did I ever know about the blood test for thyroglobulin. I still don't understand why my primary care physician didn't suggest these tests and it probably goes without saying that I have changed doctors and clinics.
What you need to know:
If you had x-ray treatments for tonsilitis, adnoids, achne etc. back in the late forties / early fifties, especially if you were a child, you may be at a higher risk for thyroid cancer. However, you probably would have already been diagnosed because it usually happened within 10-15 years after the treatments.
If you were diagnosed with thyroid cancer at any time in your life, no matter how long ago, you MUST be vigilant and have regular whole body scans and blood tests for thyroglobulin.
You should be seeing an endocrinologist, not just your primary care physician to follow up after having thyroid cancer.
Do any internet search for "thyroid cancer" and you will find a plethora of information. I can't believe I never bothered to look it up. I had stopped worrying about it before the internet was part of my daily life.
If you have a friend or family that has ever been diagnosed with thyroid cancer, please share this information with them and make sure they are getting regular check-ups that include the important diagnostic tests I mention above.
And one more thing. Don't take anything for granted. Tell the people in your life how much they mean to you. Enjoy every beautiful flower, cloud and sunset. And have fun.
-- Bonnie
If you have a friend or family that has ever been diagnosed with thyroid cancer, please share this information with them and make sure they are getting regular check-ups that include the important diagnostic tests I mention above.
And one more thing. Don't take anything for granted. Tell the people in your life how much they mean to you. Enjoy every beautiful flower, cloud and sunset. And have fun.
-- Bonnie
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