# Journey to TT on 11/27



## kcjim (Nov 13, 2013)

I've been on a 2 year journey which is about to culminate on 11/27 with a total thyroidectomy. Without going into all the detail, I have had multiple ultrasounds, and 3 fine needle aspirations over the last 2 years. The last FNA I have one 2 cm nodule that was "suspicious for follicular neoplasm", a 25% risk of cancer. In addition, when I was a teenager, I had an acne problem. My mother took me to the dermatologist, who recommended that they shoot my face with radiation! Yep, that was the treatment for acne in the 1950s. And as it turns out, that elevates you to a higher risk status in terms of thyroid cancer.

The endocrinologist at the VA tells me I need to have the thyroid removed, and refers me to ENT. ENT tells me they would rather remove half, and then go from there. I decided to have another opinion, so I went to a private endocrinologist. He tells me that he thinks the risk of cancer is as high as 40%, but recommends that I have half out to start with. He refers me to a general surgeon who does "around 100" thyroidectomys per year. He tells me he would recommend having it all out, since I have nodules on both sides, and I have the radiation exposure as a teenager.

I decide to get another opinion, an ENT oncologist from a teaching hospital in the area. He tells me that they have an experimental test that will determine whether people in my category actually have cancer....it's about 95% accurate according to him. He says it's my choice, but that if it were him, he would have the entire thyroid removed.

After some thought, I decided to have the thyroid removed by the ENT oncologist. I figured that that 5% error rate with the test was kind of a problem. Plus of course, it doesn't predict the future either. What I know right now is that I have multiple nodules, a radiation exposure, and a worsening set of FNAs.

It does put you into a dilemma. Do you root for cancer to justify your decision to remove your thyroid? Or do you hope for no cancer, knowing that your thyroid really did not have to be removed? Where I ended up was that I'm hoping for no cancer, I really would prefer no RAI treatment. I'm thinking that even if I don't have cancer now, with the thyroid still in I would constantly be faced with future ultrasounds, biopsies, etc etc. Better to bite the bullet now as all of the experts are advising.

I do have some other problems: I have a pacemaker which complicates the surgery to a degree. Those surgical instruments create a magnetic field which interferes with the pacemaker. They can deal with it they tell me, but it is a complication. I also have atrial fibrillation, a heart arrhythmia. Evidently it's a possibility that after removing the thyroid, you can have arrhythmias...to which I am already predisposed.

I'm going to keep my fingers crossed, and hope Thanksgiving this year is uneventul! My best to everyone here.


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## joplin1975 (Jul 21, 2011)

I hope you have a very uneventful, very easy experience. 

I think having the thyroid totally removed is a good plan. I think if you have antibodies, it's simply easier to regulate medication post-op if you start with a clean slate, so to speak. So, I don't think you have to root for cancer. You know this is the best plan for you, so go with it!


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## jenny v (May 6, 2012)

I agree with joplin, I think you're making the right decision with removing the whole thing. You'll be able to start with a blank slate, which will make getting your meds right much easier and you won't have to constantly worry about the other side. I just had my thyroid removed and I'm really looking forward to getting regulated and actually NOT going to the doctor for tests every 6-8 weeks like I have for the last few years.


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## gymbomom (Oct 11, 2013)

I just posted my results. I recommend taking it all. Why worry about it or worse go thru two surgeries?
Best of luck to you!


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## Endocrine_Surgeon (Oct 31, 2013)

With a history of radiation and nodules on both sides, I would recommend a total thyroidectomy. The risk for thyroid cancer will always be a concern (history of radiation is a huge red flag for us) and if you only have one lobe removed then you will likely end up getting repeated ultrasounds and biopsies of the nodules on the side that remains. If you get it all out now you can avoid that.


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## dcb (Nov 17, 2013)

Hi

I just went through that whole decision process, which was a struggle, and opted for the total thyroidectomy. My endocrinologist, whom I trust completely, said that's what he would recommend given the 40% chance of cancer I had. It's funny because at first I thought I would be pretty pissed if I got the whole thing out and then found out I didn't need to -meaning I didn't have cancer. But when I realized what I was thinking, I was ashamed. How could I ever think I'd be disappointed that I DIDN'T have cancer?

Since my TT was just 6 days ago, I'm still awaiting the pathology report, and hoping it wasn't cancer.

Although things went smoothly and I had very little pain, I wouldn't want to have the surgery again. Since you have some issues with your heart that would possibly complicate things, that's another reason to avoid additional surgery. With the total thyroidectomy, you just have to take your medication, but you won't have to always worry.

I wish you luck with everything.


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## kcjim (Nov 13, 2013)

Thanks for all the comments. Very helpful. I had another episode of atrial fibrillation a little over a week ago. But the cardiologist has cleared me for the TT. I must say, I'm feeling very nervous as the day approaches. I'll keep you all posted.


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## brejim (Jun 7, 2013)

Best of luck to you!


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## Octavia (Aug 1, 2011)

Best wishes for a successful and easy surgery for you!!! :hugs:


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## jenny v (May 6, 2012)

Good luck!! hugs4


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## Ginav (Jun 7, 2013)

Good luck!


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