Discussion in 'Coping and Compassion' started by Christine, Nov 11, 2006.
Just wanted to wish everyone a Happy and Blessed 2013 and as healthy as possible 2013 too!
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Met with the surgeon today and he feels very strongly that I need a partial thyroidectomy. He says this is the only way to rule out cancer. My sister who had a mutli nodular goiter thyroid removed thinks this is highly unusual. Surgeon doesn't care what thyroid levels are until after the surgery because to him this is not about thyroid function; it is about the pathology. Does this sound wrong to anyone else? My sister is certain that I really don't need the surgery if my levels aren't changing. I'm very confused. I want to listen to my dr but my sister is persuasive as well.
Yes, that makes sense. I had no abnormalities in my levels but I had extensive cancer. It is common to do a partial thyroidectomy, have it biopsied immediately, and then remove the whole if it's cancerous. They used to leave the other half if it looked ok, but that is no longer considered acceptable care- the cancer just comes back.
Your surgeon is right on. They are concerned about pathology, not function. Have a partial thyroidectomy. They will look at every cell in what they remove. If it's benign, you're done. If not, the rest comes out.
Just be prepared that they may tell you it's benign and just remove half but as they do further testing after the surgery they can find that it's not benign. That happened to me and to a woman I work with so we had to go back in to have the rest of the thyroid removed.
That happened to me too. When they do the frozen section pathology while you are on the operating table, they do it on what they feel is the most likely area of thyroid to have cancer. They did the frozen section on a large piece of my 1cm nodule. It came back benign. They sent everything down to pathology where they shave everything down and mount to slides and look at every cell. Somewhere else within that 1cm nodule had the cancer cells as well as some microsized cells throught the gland (not within lumps).
Oops, didn't know that as they took all mine right away. I just had a friend who had a partial on the 27th of december and they told her it was benign so I hope that doesn't change.
Thanks! I am aware that they may have to go back in and take the rest.
I'm most confused because this is nowhere near the process and procedures that my sister went through and she is convinced that I need more testing and at least a second opinion. I don't live in a huge metro area, but I had a great rapport with the surgeon. Endo is his sub specialty so I don't feel like he is using me to practice on or something.
She had uptake scans and biopsies and such.
There's been a lot of changes fairly recently in the field, I think- for example, I think it's standard practice to go w/ thyrogen now instead of the withdrawal I went through just a couple of years ago. I personally wouldn't want to do an uptake scan if I had it to do over again- not sure it didn't negatively impact how well my RAI worked. You've not had a fine needle biopsy though? That does seem a bit strange.
I believe you are right on the changes. 20 years ago, the withdrawal for the uptake scan was worse than the biopsy and total thyroidectomy! I am glad that has changed !
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oh wait- I misunderstood uptake scan. Yes, the withdrawal for that was by far the worst. What I was thinking I would not do if I had the chance to go back and do it again was a iodine contrast scan, I guess...or something like that? Not the RAI, but I think they injected iodine and did a cat scan or something like that...prior to knowing I had cancer for sure. I'm not sure why they did that instead of going straight to the biopsy.
When it was discovered I had one nodule, I had an I-123 uptake scan. There was no prep for it and it was quite easy. All I had to do was swallow a capsule and then I had to have some pictures taken of my thyroid with some strange little camera that kind of looked like a telescope. Basically what that does is tell you if the nodule is functioning or not. My nodule proved to be "cold" which is more indicative of cancer. It's better to have a hot or warm nodule. I don't think they do these anymore because the outcome does not matter.
I had some kind of iodine test prior to my fine needle biopsy, it didn't involve radioactive iodine but injected iodine. Now that I know more I don't know what the point was.
Hope everyone is doing ok.
Need to schedule my sono and blood work soon. I think my endo visit is Feb. 4th or so and she liked the stuff done at least a week before etc.
I follow an author Kathleen Fuller and she just got a clean scan so she is happy!
I wonder if Brooke Burke had rai?
Christine - I have just started reading more too. I only read the stuff I win from contests. I have quite a few I need to read. I just finished 2 amish fiction books.
Jenn - did you move to your new house yet?
Thinking of you all. Blessings always.
This thread showed up on my user panel as having new posts so I thought I'd pop in here and say hi. I'm 3 years out from my near total thyroid removal and ultimate cancer diagnosis. I seem to be well maintained on 150 mg of synthroid as that's been my dose since about 9 months after the surgery. I had an ultrasound last August that came back clear and all my bloodwork looked good. I still wonder whether having RAI would put my mind at ease as I do worry about cancer returning. I didn't have it 3 years ago because we were undergoing fertility treatments. Any thoughts on that? I don't see my Endo until August unless I have an issue. I wonder if there's any sense in just asking for the RAI.
Mari- I would at least talk to your doctor about it.
LMP- good here. Seeing a different reproductive endo Weds, and I like this office better already. How are you?
I didn't have RAI either. My doctor said that what they found was so small and early and it's really a balancing act. She didn't want to put me through the RAI and possible side effects if it might not really be necessary, and like she said it can always be done later. I had a radical neck dissection last year that I may not have needed if I had the RAI but everything came back clean so I feel pretty good. I just think you have to monitor everything really closely.
Mari--I think the decision (for me) would depend a lot on your initial pathology.
Was your original tumor under 1 cm?
Were the cancerous cells limited to being within the tumor or did you have multifocal involvement?
Was the cancer well-differentiated or less differientiated?
If the answers are: Yes, limited to the tumor, and well-differentiated then ultrasounds and blood tests are probably fine.
Good questions. It amazing what I have forgotten in the past 3 years. Had to go look at a previous post. LOL The main tumor was only 3.5 mm and I remember language like "many multifocal something or other" and I also remember saying none were within a certain distance from the edge of the thyroid. I don't remember on the differentiated part. I have moved since then and the actual report is packed away somewhere.
3.5mm is pretty small so that's good; however, if you find that you had "multifocal" cancer that occurred outside of the 3.5mm tumor (this is what I had) then you would want to follow up with RAI. Multifocal cancer means that, while you didn't have more tumors, you had small, cancerous cells in various places in the thyroid gland. As you know, no matter how thorough the surgery, they cannot operate on the cellular level and a surgeon can't help but leave something behind. The hope is that whatever the surgeon did leave behind, didn't have anything "bad" in it. It only takes one cancerous cell to start the cycle over again. If your cancer shows a pattern of multifocality then there's a good chance that there's a rogue cell in what's left. RAI takes care of that.
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