# What to ask the surgeon tomorrow?



## JadeAngel (Dec 18, 2014)

I am consulting with the oncological surgeon tomorrow about getting a thyroidectomy. My endo told me the choices will come down to a partial or total. We've been thinking long and hard, and I've been researching like mad. If those are the only choices, then I've decided total will be for the best. Though everyone keeps asking "can't they just remove the nodule and biopsy that before taking any of the thyroid?". Well, I've not run across that option for a "suspicious for cancer" result, but is that even a consideration? I know that's also a question to ask the surgeon.

Does the surgeon dose your hormone replacements right after surgery when the thyroidectomy is due to a suspicion of malignancy, or is that all left to the endo, who mentioned having a follow up 6 weeks after the surgery. Then would I have to wait 6 weeks to start the meds and trying to figure out my balance? If I need to ask my endocrinologist anything, I can just email him, but won't see him until the follow up (however long that will be since I don't have a surgery plan or appointment yet).

Are there questions you wish you had asked your surgeon, or that you think I should ask? My personal situation to take into consideration is that I'm currently a stay at home mom so I don't need to worry about pushing myself too much post-op. I want to ttc again as soon as I'm medically allowed to, and I have my mother's wedding to help plan and put on in mid may. Those are all the significant points that may or may not matter I guess.


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## joplin1975 (Jul 21, 2011)

First, no, they cannot remove the nodule only. They can, however, do a "frozen section" examination of the pesky nodule and attempt to make a final cancer vs no cancer determination. You can certainly ask about that, but know that frozen section tests are notoriously inaccurate.

The biggest issue with thyroid surgeries is that they aren't hard on the patient and there's generally great outcomes, but they do require a level of technical expertise. Be sure to ask your surgeon how many thyroid surgeries per year he or she does on average. Ask how they close the incision (should be glue or stitches, no staples). Ask if they use a laryngeal nerve monitor and how often their patients experience vocal chord damage. Ask how often their patients experience parathyroid damage.

Different surgeons handle the post-op medication stuff differently. My surgeon took the approach that he took my thyroid out so he wanted to manage the meds post-op. I complicated things by already having an endo so those two battled it out a bit. Some people report that their surgeons will do the surgery and then turn over all post-op care to an endo or another provider. It just depends, so ask him about that.

I have a feeling that the six week thing has something to do with the possibility of radioactive iodine ablation. Essentially, if it is cancer and they do a total, there are always cells left behind. It's not a "clean" surgery. Those left over cells can (and often do) cause a recurrence. Since thyroid cells are the only cells in the body to uptake iodine, the protocol is to wait a number of weeks with no meds, get your TSH really high, starve your body of iodine, and give a dose of radioactive iodine to kill the pesky left over cells. My surgeon managed the RAI process and it was about at the five or six week mark that I started meds.

They are reaaaaaaaaaaaaaaally pulling back on RAI these days and especially in cases where people are thinking about having more kids. It's something you can do a few years later, after surgery, if you need it. The post-op pathology report is really what determines RAI vs no RAI.

I don't think your mother's wedding will have a significant impact on things, assuming they get the surgery done in the coming weeks.


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## jenny v (May 6, 2012)

Ditto what joplin said and I would also ask how long they plan to keep you in the hospital (usually for a TT it's overnight). My surgeon also put a drain in my neck for the first 8 hours after surgery, which I don't think is typical, so you might ask about that. The drain helped with keeping swelling and fluid retention down, but it was nasty (I was more of a baby about the hole in my neck with a tube running out than the fact that my neck had been sliced open, lol!).


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## JadeAngel (Dec 18, 2014)

Is it typical to get the surgery scheduled quickly? I read a few girls that got it within 3 weeks, but have seen others wait months. And if it is malignant, is RAI a must (either now or down the line) or is it only reserved for, say, stage 3 or 4 cancers?

My husband is going to take off the week after my surgery, whenever it is. And I think we'll have my daughter take the bus until I can drive again (husband doesn't drive). If they only need to give one round of RAI and insist on doing it right away, would that make me have to wait 12 months to ttc like full out chemo, or is one RAI treatment not going to affect it that much?

My endo is the one who referred me to this surgeon, and arranged things for me. They're in the same geisinger network, so I'm assuming they're pretty on the same page (hoping) about that stuff.

Am I wrong to feel so anxious about all of this? Truth be told, the prospect of this cancer doesn't bug me. I've gone through the "you might have cancer" routine in august on a cancer similarly curable. I learned a lot about cancer, and particularly that kind, through that situation. It's the surgery that has me going in circles. I keep getting so mad about this all. I keep getting so anxious about the "what if"s, and going through the options and possible long term effects of any decision in my head. Frustrated to think that if my symptoms don't disappear with this surgery, does that mean it was for naught? My husband asked if we can put this off and try to find another cause for my symptoms before considering surgery, but now that they have this info, wouldn't they push for that even if I had 0 symptoms whatsoever (especially as I read thyroid cancer often has no symptoms or thyroid malfunction)? It annoys me that people keep putting perhaps unnecessary "what if"s in my head.

I'm sorry, I've been an emotional roller coaster for the last year, but I've been so anxious since last night. I just want to know I am making the right decision and getting the right information. But at the same time, I feel like I'm being overly dramatic, and like maybe it's really not that big of a deal. I don't know how to feel :/


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## joplin1975 (Jul 21, 2011)

No, RAI is not required for all cancers. There's a lot of grey areas in determining the use of RAI (all complicated by the fact that doctors are awaiting the release of new guidelines on the treatment of thyroid cancer and, in the absence of the actual guidelines, some are making educated guesses).

I had stage 1 and had what was considered an average dose at the time, but is now considered a large dose. RAI is used, generally, when the nodule is larger than 1cm, is not encapsulated (imagine your thyroid in a "balloon"...if they cancer busted through that "balloon," your are pretty sure there is going to be cancer cells floating around), if any cancer is found in the lymph nodes (which reminds me, ask your surgeon how he determines if a prophylactic neck dissection is required), and if the caner is multi-focal (that is, in both side of the thyroid).

Since the pill (or sometimes liquid) is highly radioactive, it is advised that one refrains from ttc for one year. You'd also have to isolate yourself from your daughter and family...how long depends on the dose. But, keep in mind, there are a lot of "ifs" in this process...it doesn't make sense to borrow trouble, you know?

It totally makes sense to be emotional about this. I think it is very, very reasonable to assume your symptoms are related to a dysfunctional thyroid. I appreciate not wanting to jump into surgery, but...it's very hard to articulate how those thyroid symptoms can "sneak up on you" and really impact your quality of life....and, conversely, how fantastic you can feel once everything is sorted out.


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## Andros (Aug 26, 2009)

What would we do w/o you? I can't imagine! Thank you for addressing such difficult situations!

Hugs,


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## JadeAngel (Dec 18, 2014)

Thank you so much for all the help and suggestions  Maybe it's because I'm doubly sick (daughter brought home a lovely stomach virus for me), but I'm having a hard time concentrating and can't find a clear definition. What is a prophylactic neck dissection? I'm assuming it's to do with removing nodes? I am only finding a lot of articles about the controversy.


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## joplin1975 (Jul 21, 2011)

Yes. Thyroid cancer frequently spreads to the surrounding lymph nodes. Often times, surgeons will take out the lymph nodes and test them for cancer. It gives a more complete picture of how invasive the cancer is (again, *if* you have cancer). Also, RAI can, in some people, be less effective in lymph nodes, do the perference is to remove as much as possible surgically.


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## Octavia (Aug 1, 2011)

My first surgery was a partial thyroidectomy because my FNA biopsy was inconclusive. After my pathology for that surgery came back positive for cancer, I was scheduled to have a second surgery to remove the other half of my thyroid. During that second surgery, my surgeon did a "central neck dissection" and took some lymph nodes so they could be examined for spread of cancer.


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## JadeAngel (Dec 18, 2014)

That makes sense then. I wonder why there's so much talk about the controversy of it? Well, my appointment is in a few hours now, and I think I'm relatively prepared. I just need to write down my vitamin supplements again (should have made a copy before I gave the list to my other dr). Unfortunately, they closed my daughter's school because of the snow, and I'm not sure if anyone can watch her... so I also have to figure out something. I really didn't want to have to go to this appointment alone :/ I've gone to countless appointments in the last year alone, but I wanted my husband with to put him at ease as well. Bad timing for snow.


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## joplin1975 (Jul 21, 2011)

Good luck today. The snow never cooperates, does it? I think you should feel free to bring your daughter. My consult was pretty low key.


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## JadeAngel (Dec 18, 2014)

Thank you SO much for all your advice and suggested questions. I definitely came out more confident in everything as all my questions were answered and then some.

We did end up deciding on a lobectomy. I told him we did extensive research and felt thyroidectomy would be the better choice, but he was adamant that lobectomy would be the most advisable route. He thinks it's very likely I won't need any hormone replacements if we don't need to go in for a tt. Obviously he can't say for sure if it's malignant or not, but he seems to think it's more than likely benign. I don't have access to this pathology on my account, but they showed me the results had afirma GEC as suspicious for cancer, but MTC as negative. Though, truth be told, I don't fully understand the relation between the GEC and MTC results.

The only awkward moment was when I asked how many thyroid surgeries he's done. I guess he didn't expect that question and I felt a bit embarrassed after I asked. But he said he estimates in the last month 10-15 and has done hundreds. He will examine my nodes during the surgery, but won't go for removing any unless he feels there is cause for concern. Also my endo is going to take care of all the follow up, so at least I'm clear on who to go to for what. He's very nice, and the office lady is so sweet and very insistent that I call if I have any questions at all. I've had endless dr appointments in this last year, and this was by far the most reassuring, so that's good 

Though, he thinks there's only a 1 in 4 chance this is causing my symptoms, and I have the what... 5th, 6th? doctor saying it's probably autoimmune (hmph..). But.... we shall see, right?

My surgery is on February 10th with some appointments around it for pre-op, blood work, and follow ups. So here's hoping it's benign, complication free, and everything goes well.

Again, thank you SOOO much for sharing your knowledge on this topic. I've had to crunch learning about this into a much shorter time frame than with my previous medical problems, and your help has been invaluable to me.


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## Lovlkn (Dec 20, 2009)

> We've been thinking long and hard, and I've been researching like mad. If those are the only choices, then I've decided total will be for the best. Though everyone keeps asking "can't they just remove the nodule and biopsy that before taking any of the thyroid?". Well, I've not run across that option for a "suspicious for cancer" result, but is that even a consideration? I know that's also a question to ask the surgeon.


If you feel strongly - then insist on a total. I doubt highly that 1/2 a thyroid will provide all the thyroid hormone you need.

Have they ever run the FT-4 and FT-3 tests on you? I personally would want those run prior to my TT or PT. I wonder with your TSH of 2, your Free's might not be a tad lower than they should be, which of course would cause the hypo symptoms you are experiencing.



> My surgery is on February 10th with some appointments around it for pre-op, blood work, and follow ups. So here's hoping it's benign, complication free, and everything goes well.


Confidence in your situation is key to a great recovery!


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## JadeAngel (Dec 18, 2014)

I was back and forth between them, but still wanted to consider his opinion before deciding for sure what was best. He said there is a very good chance I won't need meds if it's benign and I only need half out, and that he's seen extremely few complications even when a 2nd surgery is needed. I'm going in on the 3rd for some blood work (I thought they were going to do it today, but they scheduled an appointment for the 3rd so I can also talk to the anesthesiologist that day), and he's also going to check for any other thyroid problems like during the pathology, and not just check for malignancy (maybe that's standard, I don't know, but he made a point of telling me that).

Do you know if there's any significance to a negative MTC with a GEC of suspicious for cancer? I can't find a clear explanation. The only thing I could kind of gather was that it means I don't have the aggressive form? But I could be understanding wrong.


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## joplin1975 (Jul 21, 2011)

I don't know about GEC but MTC generally refers to medullary thyroid cancer, which is exceptionally rare and has a relatively poorer prognosis. So, you've got one great thing in your corner already!


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## JadeAngel (Dec 18, 2014)

Well, that's good! haha 

My husband insisted I write my endo asking to make sure I get a t3/ t4 test before the surgery, if nothing else than for peace of mind. I'm not sure if the tests the oncologist ordered involve that, so I just wrote the endo.


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