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New to the group, new to cancer and new to how confusing this is...

dkersey
Posts: 2
Joined: Mar 2012

Quick background: I am a 26 y/o male, and I have aggressively pursued treatment of my thyroid and thyroid cancer. Here is my story and then my major question.

Nov. of 2011 I went for a check-up because I was having problems focusing, getting out of bed, having energy and motivation through the day and gaining weight. Was diagnosed with Hoshimotothyroiditus. Doc asked if my thyroid was tender at all, I never noticed it before but now that he mentioned it yes it was. Ultrasound came back indicating multiple smaller nodules on the left and right lob and a larger nodule on the isthmus. Doc referred me to ENT and ENT sent me for a biopsy Jan. 13 2012, they only biopsied the nodule on the isthmus which measured 1.17x.59x1.02 CM. Biopsy indicated ( moderate groups of follicular cells, with areas of nuclear atypia, differential diagnosis, was follicular neoplasm and a follicular variant of papillary carcinoma. ENT says he's still not convinced its cancer, but wants to remove the nodule. I asked why not the entire thyroid and he said "he would hate to do a TT on a 26 year old male and that it was more dangerous, he proceeded to tell me a pathologist would be present during the surgery and would do a quick biopsy while I am on the table and if there is cancer they would do a TT, I indicated that was fine but that if it had spread elsewhere I wanted to be consulted before removing other organs or tissue.

Feb. 13th surgery is performed no biopsy was performed, and when ENT went to tell my mother surgery went well she asked if he had done a partial or total and he suggested that he would have done a total but I indicated he was not allowed to. So a week after surgery I attend post op. with ENT and get the biopsy results from the nodule and surrounding tissue removed and this is what it reads:

Two foci of follicular variant of papillary microcarcinoma, one with associated marked sclerosis
tumors measure .4 and .3 cm in greatest dimension
definitive extrathyroidal extension not identified
margin negative for malignancy, tumor present less than 1mm from the inked margin
negative for anggiolymphatic invasion
marked lyphocytic thyroiditis consistent with Hashimoto's thyroiditis in proper clinical-serologic setting
benign lymph node.

ENT says yes this indicates there was cancer in the tumor, and we are going to just wait and do another ultrasound in three months.

My question is it has seemed to me since the first biopsy they had been beating around the bush about this being cancer, I had indicated from day one I really just wanted the entire thyroid removed since I am on thyroid medication anyways for the hoshimotos... And now I have a piece of my thyroid missing, a scar on my neck a lump in my throat and a very good possibility there is still cancer (I am saying that because there are still nodules on my lobs which were "small enough they were not a concern"). I am ok with a def. you dont have cancer and im ok with a def. you do have cancer and heres what we are going to do. I have a hard time dealing with "egh we were in there and would could have taken the whole thing out and been done with this, but lets leave half of it there and see if it turns into something down the road..."

Sorry for the length but is there anyone with some good advice or encouraging positive vibes you could throw my way? The Doctors I have been dealing with have just been frustrating. I am very much considering taking my biopsy's to another doc. for a second opinion? Is this a good idea? Any suggestions on a Doctor? I am in NC.

iggymurphy
Posts: 34
Joined: Sep 2011

Sounds like he should have taken the whole thing out. It never hurts to get a second opinion. Its your health and unfortunately you have to be in charge. Sorry this is happening to you at all. I am so glad I got a second opinion during my process. Not every doctor treats the same way and you have to find someone you are comfortable with.

sunnyaz
Posts: 582
Joined: Oct 2010

I would go to an Oncologist that specializes in Endocrine Cancer. My ENT really screwed up and I ended up having to have a third surgery to fix his mistake. My Endocrinologist/Oncologist is a surgeon and was able to target the metastasis and remove all of the cancer. This is after my cancer had metastasized to my lymph nodes (post TT) and the ENT missed the targeted nodes on the second surgery. Then I had to do a second RAI treatment.

I am sure there are good ENT doctors out there but they don't study the nature of how cancer spreads like an Oncologist does.

Best of luck and blessings,
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

get copies of your medical record of that section so you can learn about everything and look up the terms they use.

for myself they found out the first 1/2 had cancer in it and scheduled my surgery...

if you want the thyroid out tell the doctors... if you want to live with 1/2 a thyroid that may be the plan that your insurance will cover.

defiantly go for a second opinion.

through my various issues cancer related and other I have asked for 2nd opinions lots of times...

they normally take 1/2 the thyroid out cause if it is NOT cancer you still have 1/2 a thyroid but myself I do not know why they would not go for the 2nd surgery.

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