Inconclusive FNB...now TT surgery?!? Advice!!

[kimg747]

I have many nodules all over my thyroid which was discovered for the first time 6 months ago. I had swelling in my neck, high blood pressure, heart palpatations, etc. that went away suddenly. Ever since this isolated incident, my thyroid has been functioning normally, doesn't bother me, and I am just monitoring the nodules ( I have 9 nodules). It was just time for my follow up 6 month ultrasound, and only one nodule grew in size. I just had a FNB (fine needle biopsy) and the results came back INCONCLUSIVE. My doctor still says its up to me...my choices are follow up in 6 month with another ultrasound...or have a total thyroidectomy. He kind of rushed me off the phone...and said I have a 20% chance of it being cancer and that I have too many nodules to monitor so I have a lot to think about!! So, anyone have a similar experience?!? I think I should wait another 6 months but my family is panicking & saying to take it out ASAP. Any advice??

[atlanta717]

I like to find a good surgeon( for Thyroid nodule removal) in Atlanta area. Please help. Thanks to all of tou.

[kimg747]

Thanks, I have found a great surgeon...well, he doesn't exactly have the best bedside manner...but, he does well over 150+ per year!! I will try and keep everyone updated!! Best of luck to all!

[MANmom]

I think you have made a wise choice, especially since they are continuing to pop up.  Take it out, ease your mind, get the answer.  Once you get on the right meds, you will feel fine.  Good luck!  And get a great surgeon, one who does at least 50 thyroid surgeries a year.  You don't want a beginner working on such a delicate surgery.

[kimg747]

Thank you all so much for your feedback!! It is so comforting to know I am not alone and I now can go into surgery understanding fully what to expect. When I went to my last ultrasound, they found more nodules popping up everywhere - they were very, very small, but I have too many to monitor and the bottom line is I don't want to get cancer. This forum has answered so many questions and concerns that my doctor was unable to answer for me. I now realize I have thyroid disease and these nodules will not be miraculously shrinking any time soon. It is only going to get worse. I was so worried about the surgery and being on meds for the rest of my life, but I realize now a little temporary weight gain is never as bad as getting cancer and having it spread. I am amazed by the number of people who had benign results but after a TT, found traces of cancer. So, my decision has been made...I will call and schedule the surgery!! Thank you all for your help and guidance!!! I wish you all a speedy recovery so we can all Live our Livesto the fullest!!

[strawberryseed]

Hi,

I had a total thyroidectomy on Sept. 30, 2010. First I had two ultrasounds. The first US showed nothing. The second one a year later at my physical showed something, but they could not make out what. Next a fine needle biopsy could not give a firm confirmation of what the heck the shadow was. Next, a total thyroidectomy showed, while under anesthesia that I had two small less than 1 cm cancers. The shadow that they saw on the US was my parathyroid lobe peeking through my thyroid. Blessing in disguise that they could not make out what it was. That made me decide on having it removed. Now, I am fighting hard to get back to normal via levothyroxine. Labs show normal or good, but I feel like hell sometimesl. Too many symptoms to share. But, let me thank God that it was discovered before it became large. I did not have to have Iodine therapy. I truly think that I will get back to near normal after I visit my new endo on the 17th. At least I hope so. My old endo was like a college student. She knew nothing. Good luck to you. Do not be afraid to make a decision. The sooner, the better.

[madethedecision]

kimg...I am in a VERY similar boat as you. I have a 2.5cm solitary, solid and cold nodule. The list of BAD charactersitics! LOL I have been following mine for about a year. The first biopsy came back benign. At my last follow up just over a week ago my Dr. gave me a number for the first time - 20% like you. I sat and mulled that over for a number of days. Combed boards like this one, Talked to friends and family. Just spent a lot of time on it as I'm sure you have. Here are some thoughts that affected my decision;

I've read a number of these stories online but a friend of mine's mother had a similar set up...even the benign biopsy. She opted to have it out and it was actually cancer and has spread to her joints.

At first I thought - ok, solitary, solid, cold, largish and, last report the dimensions had changed (so in my mind the thing is ALIVE!! LOL...being dramatic I know!) but I have no family history - good. Until my Mom reminded me that my dad was adopted and we don't know his family history...he died of cancer at a young age. (Not thyroid though)

If I have it out, yes, it's a journey to get regulated but I know I'll be ok.

If I have it out and it's cancer...I STILL know I'll be ok (high cure rate)

If I DON'T have it out...I can't be SURE I will be ok.

It has a high cure rate, yes...but only if you know it's cancerous which you can't be 100% sure until you have it out. Need to know in order to cure.

My Dr. wanted me (way back) to consider the surgery risks...1% chance of nicking the parathyroid and vocal cords. Well...that's only 1%...should I not, then, REALLY consider a 20% risk?

I don't know if I can handle stressing every 6 months...I've had nice disctractions to get me through the last 2 but not sure my hubby will want to take us on a trip every 6 months! HA!

20% is not 30, or 40, or 75...but it's still 1 in 5. I was in the Dr.'s office and noted three people waiting for him in the hall, me in one of his rooms and another man in the other. I thought... 1 in 5...so ONE of us has cancer. It was an image that sat with me a fair bit.

Obviously these are my own personal thoughts and feeling on the situation. I made the call on Friday and told the secretary that 20% is high enough for me. My ENT is away until Wednesday so...I wait for the date. My anxiety is much less after having finally made the decision. Whatever you decide be sure to listen to your gut too.

Good luck! And sorry this was so long! LOL

[redheadaussie]

The old myth about gaining weight is just that a myth.
It was from back in the 1960's when they underdosed that people became regularly hypo and gained weight.
I was super hypo after my TT (due to mismanagement of my medication due to stupid doctor) but I LOST weight.  Tons of weight. I feel the Hashimoto's was keeping the weight on!

  Don't let a few symptoms make you feel you don't want to lose your thyroid. In all honesty, much and all as I hated the whole process, I am far happier knowing that the other side taken out 5 months later DID have a cancer which was missed when I had the left side taken out.

   You can flip a coin to make your decision. It is sad that there is no good testing at this point in time, but I think you have been misinformed about the potential for misery after a TT. NOT everyone has those issues, just most of us misery-guts people here! It is NOT the norm to have severe issues after a TT. Only if you are not taking the medication correctly, failing to comply with it, not being tested regularly, or not dosed correctly will those issues occur.
I think you need to do more research and perhaps get a second opinion on the management of your nodules. Not all nodules grow, not all nodules are cancer, not all cancer will kill you quickly. You may need some medication now to help keep the nodules in check, and possibly your thyroid as well.

[MANmom]

Your concerns for weight gain are really only temporary. Once you get on the correct dose of medication, you will again feel normal, at least I did...really I felt better.  I kept walking throughout my cancer treatment, so I only gained a bit over 20 pounds.  After RAI and starting meds, I started dropping the weight with good diet and exersize.  It did take almost a year to get the weight off, since then, My Endo had to deploy (military hospital) so I got a new Endo.  He felt he knew better than I did how I felt, so he dropped my meds, causing me to gain back 10 pounds.  Well, after several months, I finally convinced him that I felt better on the higher dose, and now I am back on the right meds, and am dieting and exersizing to lose those extra pounds.  The difference is I feel so much better, now I like to get out and walk or run, it isn't a struggle anymore now that my thyroid is gone.  Before, my legs felt like logs, my joints hurt, my toes cramped, I struggled through a run.  Now, I feel pretty good walking and running, so it was only good for me...and the biggest thing I AM CANCER FREE...there is no calming the mind when you don't know.  If you get on the right dose of meds, and I stress that you must tell your doctor when YOU feel normal-not when your levels are so-called normal, then you will be fine.  You might feel like crap due to the nodules, not the thyroid hormone levels...your body might be over-compensating by working harder due to the nodules.  Don't assume that you will feel worse, you might feel better, and isn't it worth that chance?  Not to mention, it might be cancer, which could grow and spread...thyroid cancer usually spreads to the bones and lungs, two places you DO NOT want it to go...weigh your options, then make a decision.  

[kimg747]

Thanks for your replies! I am a 40 yr. old mother of three. I have always had what I considered hormonal issues my entire life....mostly hypothyroid symptoms...but each time I went for a blood test I was told my thyroid levels were normal. Unfortunately, I do have many thyroid nodules to monitor. My thyroid doc said he will not do any future biopsies on the one that just came back inconclusive because future tests will yeild the same results. So, he basically said I have a 20% chance of cancer...it's up to me. He mentioned doing a partial thyroidectomy but I have too many nodules to count & will eventually have to have it all out. I am afraid of the surgery. I am afraid of gaining a lot of weight afterwards. But I am more afraid of getting cancer. I just wish there was better testing available. Even if the results are benign, I am still reading that many found out they had cancer. Very scary!! I am also dissapointed to hear the nodules will not go away, but continue to get larger with age. If I have it out, I have peace of mind. If I have it out, I am looking at weight gain, hair loss, exhaustion, just feeling like crap for the rest of my life....so I really don't want to have surgery unless it is necessary.....but I am starting to realize I will eventually have to have it out. Thanks for your replies & good luck to you all!!

[MANmom]

I had much the same, normal thyroid function, four nodules, but I was having hoarseness and swallowing difficulties.  The question I will ask you is:  is a 1 in 5 chance high enough for you?  It was for me, my FNA result was "benign follicular clusters", I still had cancer (and Hasi's as well).  I chose to have the 1/2 removed that had 3 nodules in it, they did find small tumors, then the Endo wanted to watch and wait on the other side, the 3 surgeon ENT's wanted to take it out.  I followed the surgeon's advice, they found the biggest tumor ont he other side.  I am glad I had the whole thing removed, ALL my problems went away after that...joint pain, high blood pressure, hot/cold spells, night sweats, wierd periods; all gone after the thyroid came out.  How old are you?  You will have to remove it eventually, those nodules will not go away, although they will sometimes shrink. Many of us live just fine or better without our thyroids, I am much better.  Once I got the meds right, I feel normal or better than before.  So you have to ask yourself, remove it now or later, you can also have 1/2 removed and tested, at least you will know for sure, and may still have thyroid function.  Lots of people who have 1/2 removed still have thyroid function.

[redheadaussie]

I had an inconclusive result too on on my left side. It was removed.It had Follicular adenoma with changes. Means it wasn't cancer but was on its way.
In hindsight, I did not know enough, and should have asked for a 2nd FNA.

Sadly for me though I had severe Hashimoto's and it was discovered at removal of the left side.

Your case is probably better to be a watchful wait and get re-biopsied in the next 6 months. Only you, of course, can make that decision.