Would like to hear the experience of those whose had a TT (from the recovery room until present) PLEASE...

[blsdnsvd]

I have had several opions on a multi-nodular Goiter that was found 2 yrs ago but was present over 10 yrs ago at least. I have had three biopsies in total and they all were benign for malignant cells but the last one says..cannot rule out follicular Neoplasm which is why I have been suggested to do a TT due to the abnormal cells on both sides of the thyroid. My largest nodule is 3.7cm and I have no discomfort or any other symptoms and my tsh levels are normal. Due to that fact that there is a chance that there is malignancy i have opted to do the surgery in december , however skeptical after hearing nightmare stories...I have tons of faith and will believe that everything will be ok but I would love to hear stories of how it went for others...thanks in advance for your post.

[blsdnsvd]

Thanks for your opinion. I have read quite a few of your posts and they are very informative. I have had this goiter for a long time but never knew what it was. I started having fna's since 2007 and they were benign but with "favor follicular neoplasm on the right and "favor Hurthle neoplasm on the left...and the sono showing a "cold nodule" doesn't help either. My tsh levels were normal but the surgeon told me that majority of the time they are. I was not diagnosed with "hashi's" and do not have any symptoms...just a Thyroid Goiter w/multi-nodules on both sides with "no" other symptoms. I have decided to have the TT and I will stay in faith and continue to pray.Thanks again and take care as well.

[blsdnsvd]

Thanks for your opinion.My doc says that if I do not have the surgery: 1) the goiter can grow and if this happens, it can be harder to handle 2) the cells may be cancerous and the only way to diagnose is to removed the thyroid, although the fna results didnot show any malignant cells,,,just says: can't rule out. 3)I'd have to have to a fna every 6mos...and I will be worried with the results each time.....So...I have decided to go ahead and do it and get it over with...My concern is my health afterwards because I have school age kids and I need my Energy...I have joined a gym and lost 25lbs and I've heard horror stories about gaining weight, shortness of breath, etc....(just nervous)...by the way..I have had 3 opinions and they all say "do it"..I just gonna pray and keep the faith. Thanks again for sharing your story and your advice...

[blsdnsvd]

I have had 3 opinions, praying that at least one would say "no surgery" needed..but that wasn't the case. Due to the fact that my sono showed a "cold Nodule" and the fna showed "favor Follicular Neoplasm" on the right side and "favor Hurthle cell Neoplasm" on the left called for concern. I've done lots of research and have decided to go on with the surgery instead of worrying about "what if"....My doc says that although the fna showed benign there is a 15-20% chance that it is not because the fna is not designed tell the difference between a "benign follicular neoplasm" and a "follicular carcinoma"...(that *****)...I thank you for your post and Good luck to you as well.

[loonette]

From a previous post made:
I had a goiter for several years (2004) before it's removal in 2009.  It was a watch and see approach.  After the initial fine needle biopsy to rule out cancer, I was told well it is so large you can't biopsy everything.  Great.  Why did I really have it done in the first place! It came back benign.  So, I didn't have surgery back then.  I took levoxyl for hypothyroidism and to keep goiter down.  It wouldn't stay down and I noticed it got larger in 2008 (another biopsy) which again showed benign multinodular goiter and Hashimoto diagnosis made then.  No antibodies test done, the endocrinologist just said it was Hashimoto's.  I suppose based it on the huge goiter in my neck.  It was playing around with right side growing/left side growing so a fine needle biopsy did not help then since it came back benign. "nodule versus follicular neoplasm"  needed to be evaluated again.

Finally, a carotid ultrasound by Primary doc because of dizziness, showed goiter enlarged.  Went back to endo, got a surgery referral, had TT (Hashimoto's was going to destroy it anyway) in July 09 and found papillary carcinoma T2.  

It seems that cancer cannot definitely be ruled out until the actual tissue is biopsied and not just a few cells.  Oftentimes they get blood or other material.  A multinodular goiter is just too big to get all sampled.  Upon a TT then it can be sure.  Now, if it were a single nodule, I think they have a better idea with fna.  

In my case, I did not have breathing difficulty or swallowing issues which is really bizarre.  In those cases it is clear to have it removed if the size of it is an issue.  With meds, if it doesn't remain the same or shrink, then it is time to look at why.  A friend of mine's goiter went down with medication.  Mine obviously didn't.  People live with goiter all the time, just be aware if it continues to enlarge that there is a problem. Also, monitor your own goiter.  There were a couple of years there that I was confident of the benign nature of the last fnas but I should have been doing my own neck checks to be sure that goiter was not enlarging or insist on another ultrasound.  Other things became a focus rather than my health.  Keep on top of it.

As far as the surgery, it is not too bad.  Some discomfort, some tightness until you heal of course.  You can look at my other posts regarding surgery.  Peace of mind really comes from knowing there is no cancer present.  If you have Hashimoto's as I was told, the gland would eventually be destroyed.  Don't know if that is any consolation.  Take care.

[Liz94]

I had a TT 2 years ago due to a 1.5 cm. nodule on my gland that turned out to be cancer. Fortunately it was removed, they got it all and I had no lymph node involvement.  The thing is, the TT is the easy part. I was a sick mess at the thought of having my neck cut and turns out, it wasn't such a big deal for me. My biggest complaint at the hospital was all the interuptions in my sleep!  I didn't take any of the pain meds, didn't need them. And I'm a huge wuss.  There is some discomfort in the neck area, a tightness until you get healed. And to cough or sneeze was highly unpleasant for about 2 weeks. Not painful, just not something you want to do much of.  You want to make sure and get mobility in your neck as soon as you can, try not to make yourself stiff. But, as I said, that was the easy part. It's the medication game that comes after that kicked my a$$ and still, after two years, is still kicking it.  There is just no replacement for your thyroid gland. No medicine they give you will ever make you feel like you did before because it's just not possible to get the perfect dosage. Your thyroid gland puts out what you need, as you need it. Thyroid meds give you a dose and it can be either too much, too little, just right sometimes, not right sometimes and that can mess with how you feel in the course of a day depending on how active or inactive you are.  It's just a game of playing with the dosages that is such a pain!  If I were you, and THIS IS MY OPINION,  I would ask about what your risks are for NOT having it removed. Get a second and third opinion. The surgery is easy, it's what comes after that's tough. Taking out your thyroid gland is not as cut and dry as removing other organs. It's after effects are life long.

[mrsomes]

I had a TT in early June.  I had a very, very large goiter (for over 20 yrs) which was becoming more and more uncomfortable.  In early 2009 I was diagnosed with a toxic multinodular goiter and all hell broke loose.  I lost weight, starting having anxiety attacks, stomach issues...it was horrible.  Hence the TT.   I had a serious, but very, very, very rare, bleeding problem afterwards that was resolved.   My surgeon had only had bleeding in 5 of his patients over the past 20 years!  Anyway, I had no damage or issues to my parathyroids.   I had no cancer.  I had absolutely no pain afterwards.   The hospital staff has that rate-your-pain chart and they didn't have a "0" so I would give them a "1" and tell them the bed was uncomfortable.  I had no problems with my voice.   It was weak the day after and would get tired if I spoke too much for about 1-2 weeks but other than that it was a non-issue.  I was totally wiped out for a solid 2 weeks but I'm told that was more due to the bleeding problems and the fact that I wound up with 2 surgeries instead of 1 to correct the bleeding.  My surgeon told me that if I had not had that second surgery I would probably have been up and about in less than a week.  My scar looks fine.  I just keep it out of the sun with either sunscreen or scarves.  It's 4 months and I'm just now getting my thyroid hormones in check.   That's the trickiest part as everybody reacts differently to the meds they are given.   I'm super sensitive to medications so it's been little steps up and down but it hasn't been horrible.  Uncomfortable at times but not horrible.  I find it very weird, from an emotional standpoint, to not have a thyroid and to have to depend upon meds for the rest of my life.   I find myself second guessing the decision to have surgery but then I remember how totally out of control my life was and I realize this was the best decision for me.   For me it was really important to know that I had an amazing surgeon and a very good Endo Dr to do all the follow up.  I got as much information (good and bad) as I could ahead of time so that I wouldn't be blindsided if something wasn't quite right.  I also pay close attention to how I'm feeling and what my body is telling me to do and communicate that to my Endo.  If you have a good Dr who listens to how you feel in addition to your thyroid levels I believe that you will have an easier post-op experience.  Overall my understanding is that a TT is a very safe surgery and most people are back to pretty normal activity within a few weeks.    Good luck.