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Recurrent thyroid cancer

NKN
Posts: 1
Joined: Feb 2013

I had a total thyroidectomy and neck resection in July 2011 follwed by RAI treatment.  in September of 2012 I had a full body scan which was negative for cancer.  About the same time and ever since I have had neck pain (on the opposite of where I had the neck resection) much like I had when the thyroid cancer was intitally detected.   In Janaury I had an  ultrasound which aslo came back negative.  I have been seeing a chiropractor for the neck paint but the pain persists.  I will be having an MRI this week.  My endocrinologist does not think the neck pain is from cancer, my chiropractor does not think the neck pain is a musculo-skeltal problem.  I am not sure where to go from here.  I am presuming the MRI will come back negative.  Does anyone know of any other diagnositc tests for recurrent thyroid cancer?

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

An MRI is a good non-radiation type of test to see what may be going on, cancer or otherwise. I have only had one MRI and there are definitely good for detecting some things, though a PET scan would probably be the best for detecting cancer. PETs expose you to large amounts of radiation and they are also pricey so they are not typically the first line of action for making diagnoses, at least from what I have experienced. CT would also be one option for potentially detecting things.

Does your doctor track your Thyroglobulin (Tg) levels? This is one of the most useful indicators to sense if thyroid cells remain because they are produced only by thyroid cells. After RAI the goal is to have a zero or close to zero Tg level. As part of the continuing follow-up thyroid cancer patients should have Tg tested and if it begins to trend upward, other tests should be ordered. Most often increases in Tg are a sign of recurrance.

It is possible for patients to become non-avid for iodine which basically means that the thyroid cells no longer suck up iodine (radioactive or otherwise. Thus, when those patients are given small doses of RAI followed by WBS, no areas light up. This happened to me. My Tg was increasing but the WBS showed nothing. The next step for me was a PET scan which detects even rather small cancerous areas. The PET did reveal that I had residual cancer. I can't do RAI anymore because my cells don't take up the RAI. I am now monitored by CT.

I share this not to alarm you but to help in asking your doctor(s) which course of action they recommend and why. I don't know what the statistics are for non-avidity to RAI but it's not extraordinarily rare. Might be worth asking about. And if your Tg is not being monitored you should request that it be - that is a key test for all thyca patients to have at least on an annual basis, if not a bit more frequently.

best to you.

eileen

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