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"confused"!!!

DELY
Posts: 8
Joined: May 2004

hello! everybody!
Well yesterday i went to see my doctor, and i amm a little confused because well on june of last year i went through surgery to remove limphnodes they found on my neck i had 8 on my left side and 1 on my right side all had papillary cancer and so like a month later i went through my 3rd dose of radiation and barely now i am getting my results well yesterday i went to see her and she told me that my test was not showing anything nothing was highlighting on the results also she said that my blood test was not showing anything either but that she was not sure, that maybe it meant that the radiation did not uptake and was not responding to the treatment, also on my ultrasound test it was showing 2 questionable limphnodes but that she was not sure because they were to small and she also said that on a normal person this would not mean anything but since i already had cancer that she has to biopsy them again and so then, has anybody been through this
and can you please explain to me what that means,also my doctor said that if the limphnodes come back positive, that she will no longer be able to help me that she will have to send me to houston tx. to get some kind of experimental drug or something. well i am pretty confused so if you could please help me, anybody! thank you!!

Rustifox's picture
Rustifox
Posts: 131
Joined: Mar 2005

Hi, Dely. I'm sorry you are going through this.

I believe, one way or another, you do need to see a thyroid cancer specialist - your doctor is doing the right thing by referring you to someone who deals with more difficult kinds of thyroid cancer - like the ones that don't absorb iodine anymore. I'm concerned that your doctor is only telling you now that the radioactive iodine treatment from last year showed no uptake - there could have been things done between then and now, and I don't understand this, but - water under the bridge.

What is important now is that you seek someone who is very skilled in thyroid cancer treatments of all kinds and issues to look at all of your files and results, and do the biopsy on your lymph nodes. I would ask the current doctor to send all of your records off to a specialist right away, and set up an appointment.

Sometimes, the cancer cells can change over time, and they act less like thyroid cells. When this happens, they can stop "soaking up" iodine, so the radioactive iodine treatments don't work anymore. There are still things that can be done - but you need thyroid specialists, ie a thyroid cancer surgeon, and an endocrinologist that specializes in thyroid cancers. Was your thyroglobulin blood test done while you were hypothyroid? In any case, it is best to get the specialists to look at you, and maybe order a PET scan or something like that, to see what is happening in your neck - they work well, even when radioactive iodine doesn't, to see what is going on. They would also be able to do the biopsy on the lymph nodes, so don't wait - ask for a referral to happen now.

Here is information on "why seek a second opinion" - look on the right hand side of this page for the link:
http://www.mdanderson.org/diseases/thyroid/

Also, here is another website that has a search engine where you can look up some of the specialists in your state:
http://www.thyroid-cancer.net/resources/findaspec.php3

I have heard there are some VERY good specialists in Houston, at MD Anderson, I believe, as I'm sure your doctor is aware. I would ask her to refer you to someone who specializes in this right away, and send your files to them, and try to get in to see them for an appointment fairly soon - your doctor is right in referring you to someone who specializes in more difficult thyroid cancer issues. If all the lymph nodes removed were positive for cancer last year, it is likely there are more that are also involved - there are over 200 lymph nodes in the neck area, so perhaps more surgery, or other kinds of treatments will be required to get them all. Good luck, and I hope this helps. Please ask your doctor to refer you to a major thyroid cancer facility - they can likely help you, but if it were me, I wouldn't wait - I would ask for a referral now. All the best.

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