Odd Pappillary Case

[NDNY]

Hi Everyone,

I am new to this forum, but have read many posts and think it is a great accomplishment and amazing place for support/guidance. I am a 30 year old male who first noticed a goiter about 5 years ago (8cm, big i know). It was diagnosed as Hashimotos and I had a number of biopsies, scans, etc. which all turned up negative. Never have had any symptoms, but got on synthroid to control growth. A few months ago I went to meet with a surgeon as my thought was always to get it out, but waited as endocrinologists said cancer was unlikely. Surgeon noticed some calcification of lymph nodes and said I should get removed. I agreed and had surgery on 11/24. Turned into TT with neck dissection as lymph nodes looked suspicious. Was in hospital for 4 days (too much fluid) and has been about week since surgery. Feeling great and got pathology report which confirmed papillary cancer of thyroid and 2/9 lymph nodes tested. Really odd case as I have no family history, no radiation exposure (i think), no symptoms, great health otherwise, and am a young male. Has anyone heard of such a thing before?

I have a few questions and would be grateful for anyones thoughts:

1. Doctor is considering another neck dissection after CT scan of left side of lymph nodes before even doing isotope treatment? This seems over agressive to me? Why not try the iodine first instead of operating again? Has anyone ever had this surgery twice?

2. How often will i need to get tested again and is it a tough process?

3. Any dietary / natural things I should consider to keep the cancer at bay? I am open to anything.

4. Anybody heard of other odd cases like mine and what causes may have been?

5. I have never felt symptoms, could this change as I get older or are the symptoms usually as a result of finding right dosage? I have been and remain on 125mg synthroid for last 4 years?

Thanks for setting this site up, I find it amazing to hear so many others positive stories.

[tina]

Welcome! I am sorry we are meeting you under such conditions. I was just dx with Papillary Thyroid Cancer this week. I had a TT on 11/23. They did not check my lymph nodes during surgery as we thought we were just removing my thyroid due to Graves disease. That was a pretty big goiter you had. I sometimes wonder if Dr's do the proper tests for thyroid disease. Did they do antibodies tests before? WOW! I am still amazed that a goiter that size showed up neg in all of those tests!!! Other than all of the questions, how do you feel? You must have had a pretty intensive surgery? I am terrified about the lymph nodes being tested. I see my GP on Monday and he is going to order some of the next round of tests and scans while we decide on an oncologist. I hope he can answer some of my own questions. Good luck and welcome to the boards. There are a lot of great people on here that will be a wealth of information to you. Keep us posted as they happen. You will be in my thoughts and prayers. Tina

[mikejr76]

I can only give a totally subjective response to your questions, based on the info from my own situation:

1. It does not seem overly aggressive to me. I think, later you'll be glad to get the surgery(s) done with sooner than later. Since you had lymph node involvement on the other side RIA ( radioactive iodine ablation) seems not aggressive enough.
I did a lot of research prior to selecting a surgeon for my TT. In a perfect world, the surgeon should have been skilled enough to see that the lymph nodes were not perfect and took them from both sides as a precaution. If your surgeon does 20 TT's a year he might have missed this fact. That is why it is important to find one that does 200 TT's a year.

2. Most likely you will get a full body scan once a yr for 3 years and a blood test every 6 months. After that, just blood tests annually. Most likely though you will have RIA after your 2nd surgery. The scans are not painful, they take about 3 hours.

3. I have done a lot of research myself about nutrition and cancer, especially papillary. I am about 4 yrs older and male. I had suffered from graves disease for 10 yrs prior to being diagnosed with papillary cs. It is almost unheard of to be hyper and develop papillary cs. Like you I had no family history, radiation exposure etc. but I had poor nutrition to say the least.

4. See 3. My case was very similar to yours.

5. I cannot really help here, as I just started taking synthroid for the first time.

[NDNY]

Thank you guys so much for the responses. I feel as I did before the surgery, totally fine and never had a symptom of any sort. My pathology report indicated that what I have is very unaggressive, has not really spread and the most concerning part was the size of the tumor. But now that is out of me, I feel even better. I am now trying to gather all medical records, biopsy reports, etc. to understand how doctors could have missed it.

I actually have a great thyroid surgeon, apparently one of the best around, and I was wrong about the lymph nodes. The left side is fine, but the issue with the right side (where the goiter was and lymph nodes removed) is because of the size, some lymph node groups may have been pushed back so before another surgery, I will get a cat scan and blood test to see if any thyroglobulin is being produced, if so, then they will consider surgery.

From what I understand of the lymph nodes, it is not that surprising that they show some cancer cells, as your thyroid basically drains to them so certain groups can be affected. A doctor relative told me that there are cases where the papillary cancer can sit on the lymph nodes for years and years and never ever does anything as it can be very unaggressive.

Mikejr76, would very much appreciate to hear how you are doing, how you are physically feeling, and how long its been since your diagnosis? Any way you are living differently which is helping you out?