pathology results finally in........bad news.

[emmymatt]

I had a extremly large sub-sternal goiter removed, along with the right side of my thyroid on July 3rd.  Biopsy of the goiter was negitive before the surgery.  The surgeon said the large goiter looked very negitive and the Patholigist agreed.  Just got final path repost back.  No one was expecting it, not even the doctors.  The goiter was completly clear, but they found a small Pap cancer in the thyroid tissue that they took out.  She said small, 2-3mm.  My question is when I asked if we now go back for a second surgery, she said not always.  "Not always!"  What else would they do?  It was my impression the standard this to do is take the rest of the thyroid, then do the radioiodine.  Does anyone know of other treatments?  I would love to hear from someone.  I haven't much luck here in the past, with other posts, so I am hoping for at least one person to respond and give me some insite.

Thanks,

[strawberryseed]

Some doctors can be so cavalier about someone else's discomfort. What are your waiting for? You cannot breathe, sleep, and all of the other problems. Being pro active about your health, is certainly not waiting.  I certainly would not wait with all the problems you described. All of the symptoms you described is not allowing you to live a quality life. The sooner you find out what is going on, and have something done about it the better. Doctors, what in the world is he waiting for? Did he tell you that? FIND ANOTHER DOCTOR. GOOD LUCK

[yvette939]

Hi I am a 55 yr old female  that have been diagnosed with several nodules and have been under  the care of both an ENT and endo, my goiter I think is hereditary my mother had one  which her thyroid was removed at the age of 73 yrs old  she had cancer . I  am having so many problems  that I am not sure if they are associated with this enlarged goiter , I cant sleep at night feels like I am choking , cant swallow  without food,pills or anything getting stuck also have a lot of heart palpitations  not sure if this come from  my thyroid problem . Even when I sit up it feels like I cant breathe , I want this out of me but my doctor tells me to just wait !! For what should I seriously change doctors ? Is removing the goiter dangerous and does it leave a big scar on your throat ? I am scared  but I want this mass out so I can feel better . Need Help....yvette

[Venora Moonwind]

To answer your questions, the surgeon doing my brest lump biopsy was the one that noticed my goiter on the left side of my neck. ( biopsy was benign.) I told him I thought I was just too fat.Lol!

May 19, 2006 is when thye took out my thyroid. It was during the surgery they discovered it had grown below my sternum. I considered it lucky they couldnt find a thorassic surgeon to cut open my sternum to take it out as it was too large to take through the thyroid incision.  I know I would have freaked out finding my sternum had been cut opened.

Fast forward to Sept 25th is when they went back in to take it out. I didnt find out about the cancer till later in October . My sugeon said bad and good news. The bad news is thething had cancer but the good news it was the good cancer.( yeah he actually said that.) After he saw my reaction he said thyroid cancer survivability was counted in decades not years.

So now 2 RAI's later I feel like I have beaten it.
I dont really mind the scars like I thought I would. For me my choice was easy. The throid dint work right anymore so I got rid of it and I am glad I did,

For me I had alot of things in favor of a goiter. I am bi polar, I had a hysterectomy. my ovaries are out, I was prescribed lithium which is damaging to the thyroid,  and I also have no gall bladder. I dont use salt much to cook with so I had a lack of an iodine source. lets see I think my boobs are my only spare parts left.LOL!!

It took about 2 years to get feeling better physically from the sternum surgery itsel. I am jet engine mechanic so I finnally took myself off light duty last summer when I could torque and break torque on bolts without hurting myself.

Everyone is different though.

I hope this helps some for you and what you are about to go through. Everyone a med help will be here to see you through all the way. This forum had been heaven sent to help us all through this thyroid thing.

PM me if you want to talk more. I will try to answer as many of your questions as I can.

Blessed Be
Vee

[emmymatt]

my substernal goiter was causing problems too.  It was pushing my trachia way over to the side of my neck.  I also would get dizzy and pass out if I lifted my arms above my head.  I think substernal goiter are very rare so it's nice to actually talk to someone who had one.  If you dont mind me asking, how was yours discovered.  Did you know you were having a problem?  Also, did they take you entire thyroid the first time?  Or did you have to go back for a second surgery after they found the ca?  Did they ever say what caused you goiter?  My docters haven't said anything to me about why?  They said the cancer finding was incendental, and the ca really doesn't have anything to do with the goiter, that they are not really related.  Like I said they really havent said what was going on with my thyroid.  I am going for my second surgery to remove the rest of the thyroid on October.  Wondering if it really matters at this point to fine out what caused the goiter?

Thanks

[Venora Moonwind]

Hi there. I had a sub sternal goiter removed in 06 that just happened to have cancer in it .  The goiter was pressing my esophagus . It was about the size of a grapefruit.  I am glad I had it out since it had cancer in it and I have gone through 2 RAI. Everything is clean and green now.

Thyroid cancer is slow growing. I felt relieved that it was out of me since I was having quality of life issues with my breathing and swallowing..

it is possible that your endo may want to moniter your Thyroglobin or TG which is a cancer marker. I get mine checked about twice a year now just to be on the safe side.
You get it checked when you have your labs done.

Let us know how it goes.
Love Venora

[MANmom]

They still do that, but I think that if you have a micro-tumor, they will watch and wait.  Endo's tend to be cautious, they would rather manipulate your hormones rather than try to regulate you without a thyroid.  I can't think of a reason you would want to wait other that there is nothing there to be seen in an ultrasound, if you get another goiter, that my be a reason to take it out.  It was sub-sternal? meaning below the collar bone?  Thyroid cancer usually metastasizes in the lungs, and is also associated loosely with breast cancer.  Myself?  I would also have it out and get it over with.  I don't think they would radiate you unless they find anything else, but I am not a doc...maybe they would.  Endo makes that call.  After they found my big tumor the Endo met me at the door with the referral in hand for the Nuke doctor, so I did not even have a choice.

[emmymatt]

First, thank you very much for your comments.  I really appreciate the feedback.  I saw the surgeon today, she basicly told me it was up to me what we do next, she would support me either way.  She told me to go back to the Endo doctor and get his opinon, but she believes he will want to take the wait and see approch.  To be honest, I'm afraid that they (all the doctors) will opt to not do the second surgery.  I want the second surgery.  Like you, I dont like the thought of any size cancer being in my body.  And, I am concerned of what could be in the other side, even though the US didn't show any thing.  Although they were really focused on the huge goiter that was growing into my chest.  Wondering about the radioidine, will they still do that with just the micro-tumor?

[MANmom]

I am in the same boat as you and was hesitant about removing the rest of my thyroid.  I had the first surgery due to nodules on Apr 21, they found no cancer in the nodules, but did find 2 micro-tumors in the thyroid tussue, 1 and 2 mm.  I had an additional nodule in the left side, and my surgeons all said TAKE IT OUT.  My Endocrinologist, however said watch and wait, he did an ultrasound in his office that day and saw nothing to be concerned about, the nodule had not grown significantly in 5 months.  But, I also had Hashimoto's, and I knew my thyroid that was left was not going to work forever, so I chose to have the other side removed, I was merely delaying the inevitable.  I am glad I did, they found a big 1.5 cm tumor on the left, as well as another micro-tumor of 1-2 mm, and now I am two weeks away from RAI ablation. I see you are only 34, and it is probably hard to think of life without a thyroid.  Thyroid cancer grows so slowly (usually) that you may never have any more trouble, that is why they are being cautious.  If you have no more nodules, there is a good chance you don't have any more tumors. For me, it wasn't very comforting knowing I had any cancer of any size in me.  So I chose to have it removed.  They could not see the big tumor on the ultrasound, maybe it was hiding behind the nodule. I also have a brother who is a doctor, a radiologist, he said you might as well have it all removed and get it over with.  I am 45 however, and that is probably a different scenario than you at 34.  Do your research, check the odds of having micro-tumors and how they react, sometimes if you watch the hormone levels you can tell if things are changing and what to be concerned about, but if it were me and I was done having my children I would get it over with.  Here is an interesting article I read on small microfollicular papillary tumors you might want to read:

http://www.sciencedaily.com/releases/2007/10/071005144830.htm

Good luck, any other questions I would be glad to answer.