Thyroid Issue!

Hot dam!  The same thing happened to me with in this month.  I had the biopsy, it's nothing, just a prick.  The results came back, " inconclusive"  and the biopsy has been forwarded to a lab that specializes in thyroid biopsies.  I'll post the results here when I get them.  Even though thyroid cancer is not that serious, I am sitting on pins and needles (no  

pun intended) waiting for the results.  Good luck with yours. 

9 years ago (gosh, how time flies) they found a lump on my thyroid too. I had a needle aspiration (way easier than a pouch scope). It did turn out to be cancer and I have since had 2 rounds of radiation therapy and surgery to remove my entire thyroid. 

The good/great news is that it is one of the most curable cancers, and none of the treatment affected my pouch in any way. The radiation is in the form of radioactive iodine taken by mouth, so it's not invasive, besides the fact that you are ingesting a radioactive material, of course.

 

So don't worry too much. 9 years later, me and my 19 year old pouch are still doing great.

 

Let me know if you have any questions.

C-jay

I am a little anxious, as I thought if I would ever get cancer, it would appear first in my rectal cuff where I have known inflammation.  The thyroid was never even on my radar as a possible problem, because my hands have been full fighting the pouchitis.  The thought of a needle being jabbed into my neck is not a comforting one, and drinking radioactive potions even less so.  I will be relieved when it is over.  I will report back Friday.

I went for the ultrasound and biopsy this morning.  The ultrasound revealed a lipoma on my thyroid.  The Doctor told me they are usually harmless but they took biopsies.  I had a total of 4 shots into the neck.  They use a small needle about the size of an acupuncture needle but they aspirate with it and there is a strange sensation of tissue being sucked out of your neck.  Kind of felt like I was in a Dracula movie on the receiving end of one of his bites.  Only 1 of the 4 shots was really painful, the others were pricks.

 

Biopsy results back in a week.  They told me in the worst case scenario if it's a papillary cancer Yale has the best group of thyroid surgeons in the world, and they would be able to get it in one surgery and probably remove it, no ongoing radiation or chemo being needed.

Here is another thread started by Spooky linking IBD and thyroid disorders:

https://www.j-pouch.org/topic/i...nd-thyroid-disorders

I think most autoimmune disorders have a way of linking up, if you look hard enough. Hubby has psoriatic arthritis and Hashimoto's thyroiditis. 

 

Plus if your sister has thyroid issues, might there be some genetics involved?  I don't know; just asking. Like my mom and sister both have thyroid disease; my kid and I both have IBD, etc.

Update:  After sitting on pins & needles for over two weeks waiting for a biopsy report from  a lab specializing in analyzing thyroid nodules, results came back again as, "inconclusive".  I was given this information by my gastro guy over the phone while out of town and I have been scheduled to see the surgeon next week who did the biopsy.  Being suspicious (perhaps paranoid) I suspect he will lay the real news on me.  My question is this:  anyone have views on thyroid cancer treatment from the Cleveland Clinic?  They did a great job treating me several years ago for complications from my gastro surgery.  Thanks.

 

Keep the faith.  My second biopsy again proved inconclusive so yesterday, a third one was done and this time five vials of fluid were taken.  Either way, you are correct, the cancer is very treatable but explore all options besides surgery.  One of the best questions I ever asked was to ask my GI who he wold have a Colectomy/J pouch perform on him should he need it.  His answer steered me in the right direction. 

It's a confirmed cancerous tumor - a carcinoma, papillary cancer - and the only treatment option is surgery followed by consumption of a radioactive isotope.  The only question is whether it's gotten into the lymph nodes, in which case it would be not only a thyroidectomy but also a neck resection.

 

 

Aww... I'm sorry to hear this.  The hits just keep coming, but we pouchers are strong and resilient and I'm sure you can beat this too!

Thanks.  I am just going to deal with it.  I have several vacations planned in the next few weeks, to New York City this weekend and to Montreal for the Jazz Festival 4th of July weekend.  I am working my doctor's appointments around that and hope to schedule surgery, whether a simple thyroidectomy or that and a neck resection to remove lymph nodes, the week after 4th of July when I return from Canada.

 

I will know the result's of next Thursday's second round of tests on whether the cancer has spread when I followup with the ENT specialist on June 26.

Sorry to hear this, I'm sure it's nerve wracking.  Hope it all works out well, good luck.

 

Are ENTs the docs who diagnose thyroid issues?  I've had a few nodules for the last 4-5 yrs that have been monitored w/ultrasounds by my PCP, but nobody seems to concerned.  Your post has made me a little more concerned!

N/A,

My thyroid issue was originally spotted on a routine annual exam with my primary care doctor. He detected swelling in my throat glands on a routine feel of my throat. He then refererred me to the ENT specialist who felt a "firm nodule" on my thyroid and ordered an ultrasound and needle aspiration biopsy of my thyroid which confirmed that I have a papillary carcinoma. Believe me when I tell you my neck looks normal and there is nothing I would have ever seen or known to be a tumor. The issue was spotted by two medical experts feeling my throat and thyroid.

Earlier in this thread LouJr. raised the question of whether surgery is the only treatment option for a papillary carcinoma. Attached is a very interesting NY Times article suggesting that surgery may be an aggressive approach as these cancers often  do not grow and can be monitored non surgically:

http://mobile.nytimes.com/2014...ancer.html?referrer=

I spoke to someone who has a confirmed small papillary carcinoma and his doctors are monitoring it with sonograms every 6 months.

The chief risks of surgery are nerve damage to the vocal chords jeopardizing one's voice (something I make my living on as a trial attorney) and taking synthetic thyroid hormone for the rest of one's life - it can be tricky trial and error to figure out the correct amount needed individually and meanwhile your weight and energy fluctuates.

If it turns out my cancer is also in my lymph nodes surgery is absolutely necessary and further testing next week will hopefully determine whether that is the case. I am also seeing an endocrinologist Monday who will take blood tests and later administer the radioactive isotope if surgery proceeds.

I will post in a couple weeks when all test results are back from the second round of tests on my lymph nodes.

Thanks for the information, CTB - good stuff (your information, I mean - not your situation!)  Looking forward to hearing that the lymph node tests turn out negative.

CT,

I know you probably have lots of resources, but I went through the exact same situation as you 9 years ago. I'm sure you know that papillary cancer is the 'best' thyroid cancer to get. The surgery is fairly straightforward. I stayed one night in the hospital, at least thats how it's done here in Montreal. (Trivia: Michael Douglas came all the way to Montreal to my hospital to get treated for his throat cancer a few years ago. So I knew I was in good hands). The radioactive iodine is a bit harder. You must starve your body of iodine so that any iodine loving cells really absorb the radioactive iodine, which in turn kills any remaining cancer cells. It's a tough few weeks with no synthroid until you are ready for the radioactive treatment. I had no weight issues, or pouch issues, but boy was I tired! And a bit miserable. It feels weird to take the iodine pill because they bring you into one of those "radioactive" rooms. The doctor won't touch the pill, they don't want you to touch the pill with your hands either, but you have to swallow it. Then you are considered radioactive for a bit. You're not supposed to spend too much time close to people. Especially little kids. And they tell you to flush twice every time you pee. Sadly I had to go through the radiation procedure twice, as they could still detect cells my body. 

 

I get an annual neck/throat ultrasound, and blood tests. I've been really lucky with my doses of synthyroid, never have any problems with that.

 

Best of luck for the easiest possible outcome. We worry about our "other" problems so much, it seems unfair to have something to add to our plate. 

 

P.s. I had swollen lymph nodes too and no cancer was found there. See, there's hope!!!

 

c-jay

Hi CJB,

Thanks for the info you posted. I am glad to hear you had a good result. I heard from one person who consumed the radioactive isotope that it threw her sense of taste off for about a month. She said all foods she ate had a sour taste. Did you experience this issue? She also mentioned fatigue and it taking time to get the synthroid dosing correct.

Any idea how long I will need to be isolated for due to the radiation? I am seeing the endocrinologist Monday so I am sure we will be discussing these issues in more detail.

Another thing I wondered about is since I have a J Pouch should I be concerned about digesting the synthroid? In what form is it given, pills, capsules or liquid? Do they make synthroid gummies that are pouch friendly?

No, I had no problems with taste or anything like that. Your diet will be very restricted for the time that you are not allowed to consume iodine. You'd be surprised how much food has iodine in it. I found that frustrating, and then being so tired just cranked up my frustration level. You can definitely eat healthy though. 

 

The daily synthroid pill is the tiniest pill you will probably ever take In your life. And I would find it hard to believe that it has any type of side effect, as it is just replacing our hormone that our absent thyroid can no longer provide us with.

 

I think I was supposed to stay away from people(mainly pregnant women and kids) for about a week, maybe two. I still went to work because I have my own office. My name is CJ, so they called me X-Ray for a whIle. 

 

For us it is a bit traumatic, but for the surgeons it is considered a fairly routine surgery. Not that that is a HUGE comfort, but every little bit of reassurance helps.

 

p.s. I know almost 10 people that have had thyroid cancer and we're all doing fine. Another reassuring fact for you.

CJ

I contracted Hep C from my abusive step father when I was a child, he'd beat me up and there you go, blood to blood transfer.  Anyway, in the early '90's I did Interferon to put the Hep C into remission.  Kind of worked but it killed my Thyroid.  I've been on Synthroid, generics do not work as well, for over 20 years, had a couple of med adjustments.  Works great.  Never had the Thyroid removed, saw no need for it.  But the meds work great, adjusting them to fit you can be tricky, but once you get the dose right the meds work great!
I'm so sorry to hear about your cancer, I hope it'll be okay.  On top of everything else, it is the last thing you need.  Always get the brand name meds for your Thyroid, generics  just don't seem to work right! 
Best of luck to you, I'm sending you some good karma!!!!