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Half or Whole Thyroid Removal?

PostPosted: Thu Sep 03, 2009 8:19 pm
by mlhageter
Hi. Recently I had a Fine Needle Biopsy of a nodule on the left lobe of my thyroid. It showed "Atypical Follicular Cells". My endocrinologist said that this was suspicious, and referred me to a general surgeon. I met with the surgeon today and he gave me 2 options: Have the left lobe removed, with the possibility of having the right side removed in a few days if it is found to be malignant, or, have a thyroidectomy, with the possibility that the nodule is benign. He told me about the possible complications - damage to the vocal chords, injury to para-thyroid glands; etc.

I'm really upset, and not sure which route to take. I do have an appointment with a doctor for a second opinion on the 10th at a large hospital about 1 1/2 hours from where I live.

I would really appreciate any input from others. Has anyone had Atypical Follicular Cells? Did you have an otolaryngologist or a general surgeon do your surgery? Thank you!

Re: Half or Whole Thyroid Removal?

PostPosted: Fri Sep 04, 2009 3:18 pm
by kmarshall
I had a similar situation. I had thyroid cells suspicious for papillary carcinoma on my left side only. I was given the same options. I decided to only take out the left side of my thyroid. It turned out to be positive for papillary thyroid cancer so I had to go back to surgery two days later to take out the other side..... turned out that both sides of my thyroid had cancer. I know it’s a hard decision. I lost a lot of sleep over deciding what to do. I went with the more conservative route but ended up having two surgeries in the end.

About the surgeon. I initially went to a general surgery who wanted to cut me open from ear to ear! So I decided to get a second opinion from an otolaryngologist. I’m glad I did. He did the minimally invasive surgery with only a one in scar. Looks really good now and the heal up time was very fast. I was extremely happy with my otolarynologist.

The first couple months of this process is hard. Good luck and hang in there. :)

Re: Half or Whole Thyroid Removal?

PostPosted: Sat Sep 05, 2009 1:24 am
by mgleasman04
Definitely go with an ENT. THink about it, an ENT only does surgery from the neck to the head, therefore they are extremely qualified. A general surgeon does surgery everywhere in the body without specializing in the head and neck area. My surgeon only dealt with thyroid surgery.

I also had a typical follicular cells. Get another biopsy and ask if there pathologist could give a definitive answer whether or not it is cancer or not. I did that and traveled to NYC to Cornell/NY Presbyterian. It is worth knowing for sure my an expert pathologist. Also, get an expert endocrinologist who specializes in thyroid cancer.
Good luck!

Re: Half or Whole Thyroid Removal?

PostPosted: Sat Sep 05, 2009 6:41 am
by mlhageter
Thank you both so much for responding to my post. I had a gut feeling that I needed to see a specialist, and you really helped me make up my mind. My endocrinologist said that the general surgeon was perfectly capable of performing surgery on me, but I felt very uneasy about it. I'm so glad that I'm seeing another doctor for a second opinion!

I haven't been sleeping well, and the "what ifs" are driving me crazy. I just want this ordeal to be over with soon.

Thank you for the advice. I really appreciate it. It helps to know that there are other people who have been there....

Re: Half or Whole Thyroid Removal?

PostPosted: Sat Sep 05, 2009 7:37 pm
by Pleidies
I am in complete agreement with the other two posts. I agree, surgery is a tough, tough choice. I was diagnosed with "possibly/probably having cancer" in late May, and had my surgery in late July - those two months were no fun at all. So many "What-ifs" were floating around my brain. But I felt confident in my surgeon's abilities, and my doctors were all very good at telling me plainly why they recommended surgery.

Get a second opinion, and if you decide to opt for surgery, definitely go with an ENT. When it comes to removal of the thyroid "perfectly capable of" and "specializes in" are two very different things. Also: make sure you're comfortable with your surgeon. It's essential that he or she listens to your concerns and addresses them to your satisfaction. Ask how big the scar will be, how many surgeries he/she does a month, how many cases of parathyroid/vocal chord nerve damage he or she has seen.... whatever is on your mind.

I would be happy to communicate with you via direct message/email about this if you like, since this was a very recent experience for me, and I know I had a ton of questions early on.

Re: Half or Whole Thyroid Removal?

PostPosted: Fri Sep 11, 2009 1:41 am
by mlhageter
Hi. I saw the other endocrinologist in Pittsburgh today for my second opinion. Wow, what a difference. She actually sat down with me, and spent a lot of time answering every question that I had. I realized, after speaking with her, that my hometown endocrinologist has not been taking good care of me. I have had this nodule since 2004. It was very small then, and my endo. told me not to worry about it. The new endo. said that I should have been having ultrasounds every year to monitor for growth/changes. I have not had another ultrasound until just recently, and of course the nodule has tripled in size. She also said that I should have had bloodwork every year to monitor my Vit. D and Calcium levels. And guess what, I've never had these done! My endo. could not feel the nodule, and the new endo. could feel it with no problem. I'm really upset, but glad that I found this doctor. She was knowledgeable, and I trusted her opinion.

She is referring me to a specialist who only does thyroid surgeries. The new surgeon does 14-16 thyroid surgeries a week, and makes a very small incision. She has a good track record. This really puts my mind at ease. The new endo. said that my nodule is highly suspicious for cancer, (a singular nodule which has grown, has atypical follicular cells with calcification running through it). She said that the surgeon will probably recommend removal of the left lobe of my thyroid, with possible thyroidectomy during surgery if she gets a positive frozen section back quickly. If not, then it's the waiting game for me. I hope I have a definite answer after I wake up from surgery, but I realize this is probably wishful thinking.

Well, anyway, hopefully I will sleep a little better tonight. I don't want it to be cancer, but I feel like I'm in good hands if it is. My appointment with the new surgeon is on the 23rd. Please keep me in your prayers.

Re: Half or Whole Thyroid Removal?

PostPosted: Thu Sep 24, 2009 10:17 pm
by mlhageter
Well, I had my appointment with the Otolaryanologist. After looking at all of my paperwork/tests, she said that my nodule has a 50/50 chance of being cancerous. My eyes started to tear up.

She also looked at my vocal cords. I was a nervous wreck, but it wasn't as bad as I thought it would be. She spent a lot of time talking to me, and even diagrammed my thryoid and the nodule on paper so I could get a better idea of the size and location.

I am scheduled to have half of my thyroid removed on Oct. 13. I hope I made the right decision, and won't regret it later. Thank you for your continued prayers.

Re: Half or Whole Thyroid Removal?

PostPosted: Tue Sep 29, 2009 8:24 pm
by rand
I struggled with the same decision. My chances of cancer were 20%. After much thought I opted for full knowing I had hashimotos and my good side would never work right without medicine. I am so happy I did full. It turned out to be cancer, it was only on 1 side but I would have had to do a second surgery. My recovery was not bad. The problems I had stemmed from the anesthia team trying to get a tube down my throat 3x. I started off as twilight and then had to switch to general. By 1 week I was back to exercising. My scar is barely visible and I do not regret that I had it all removed. I am now three weeks out tomm and feel like myself again. I was in same boat, I remember crying alot as well. The thought of having the surgery was more frightening then the actual surgery and recovery. Best of Luck and Stay Strong!

Re: Half or Whole Thyroid Removal?

PostPosted: Sat Nov 14, 2009 5:20 am
by mlhageter
I had the left side of my thyroid out on October 13th. The anesthetic made me very sick, and I ended up spending the night.

I got the dreaded call the following Monday that I had Papillary Cancer with a Follicular Variant. I was in a state of shock. The surgeon said that she needed to remove the other side ASAP, and scheduled me for the next day. I cried and cried, until I couldn't cry any more. I had so hoped that it would be benign.

After my second surgery, I found out that there was a small spot of cancer on the right side, as well. Looking back in retrospect, I wish I would have listened to my gut response, and had both sides out during my first surgery.

The bright spot in all of this mayhem is that my surgeon and endocrinolgist said that my prognosis is very good. (My cancer is Stage 1, T-3).

I've been preparing to take my RAI treatment by being on this awful low-iodine diet for the past week and a half. I can't wait until it's over. I'm also off my thyroid med, and I feel weak and "out of it". I guess this is just part of the process, right?

I get my dosing capsule on Monday, and then my scan and pill on Thursday. I'm really nervous about the scan, because I'm claustrophobic. And, of course I'm scared about taking the RAI pill because of the possible side effects. I'm sorry I'm complaining. Please tell me it gets better...........

Re: Half or Whole Thyroid Removal?

PostPosted: Mon Nov 23, 2009 9:33 pm
by Pleidies
mlhageter wrote: I'm really nervous about the scan, because I'm claustrophobic. And, of course I'm scared about taking the RAI pill because of the possible side effects. I'm sorry I'm complaining. Please tell me it gets better...........

Now of all times it is ok to complain! But I know what you mean, I feel like a baby sometimes: I've been on the low-iodine diet since the 2nd. Lots of fresh foods, which is good, but wow I miss cheese & ice cream so bad!

For what it's worth, I actually took my first-ever RAI pill this morning and I feel just fine. My dosage is on the low side, but still, it's a creepy feeling to swallow radioactivity on purpose! I'm drinking a ton of water and peeing like crazy! :mrgreen:

The only advice I have is to stay positive (as much as you can.) Especially if your prognosis is good: this too shall pass.
And I don't know how the scan is done in your area, but I think mine will just be me laying on a table with the scanner passing over me. I'll try to report back.

It will get better, I'm sure of it. *hugs*