# Help with questions to ask my ENT before the surgery



## vdshelton (Nov 17, 2011)

Hi all,

I have my first appt with my ENT this Monday after being diagnosed this past Wednesday with thyroid cancer. I'm compiling a list of questions that I want/think I should ask him on my visit. I think there's probably additional questions I should be asking, but can't think of right now - so feel free to add to my list. 

- What type of thyroid cancer was shown in the biopsy specifically?
- What stage is the cancer in? How can we test/tell this?
- Surgery date (of course) and recovery time until I can go back to work after the surgery.
- Will this surgery or medications I take after the surgery affect fertility? (I was actually planning on donating eggs to a couple before I even found out I had the cancer). If this is genetic and what are the risks I could pass this on?
- What medications are best to take post-op

***Opinions needed**** What my PCP did tell me over the phone is that my entire thyroid will be taken out most likely and that I will be on meds for life afterwards, so I need some opinions on meds that you all have had experience with. Love em? Hate em? Side effects you've had?

I've heard synthyroid is absolutely horrible. Anyone have any good/bad opinions on synthyroid? I've read very good things about a medication called Thyrolar (spelling?). Anyone heard anything about this one?


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## joplin1975 (Jul 21, 2011)

Hi. 

A couple thoughs:
1) A lot of times they can't stage it until they can determine whether or not it has invaded the surrounding lymph nodes (determined through post surgery pathology). Also, staging is often age-dependent. Are you having a total thyroidectomy (I'm sorry I can't recall)? If you are, ask him if he will take out the surrounding nodes for path or at least look at them while he's in there.

2) You may want to ask if you will be having a drain or not.

3) I would inquire as to how often his patients run into issues with calcium/parathyroid damage.

4) I would ask if he plans to recommending RAI after surgery or if that is TBD. (It will likely impact how soon after surgery you take your replacement mediciation.)

5) Ask if your incision will be stitched or glued (not really important, just nice to know ahead of time).

6) Finally, my thoughts about synthroid...I don't know if I would go into it assuming it's awful. For some people, it works just fine. It's a good starting point, as it's readily available and, since it's available in generic, can be more affordable, depending on insurance, etc. If it doesn't agree with you, then there are certainly other options you can consider, but I think it would be premature to skip the synthroid option. You'll hear this a lot on these boards, but it's true: getting your medication regulated properly is not a sprint, but a marathon. It could take quite some time.


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## Octavia (Aug 1, 2011)

joplin has given some good advice. I would add to ask about whether you'll be treated with radioactive iodine (RAI) after the surgery (it will be several weeks later if you get this treatment). If you get this treatment, and you are still wanting to donate eggs, you should donate them prior to the treatment. (But in all honesty, with a cancer diagnosis, your eggs may no longer be accepted.)

If your entire thyroid is removed, you WILL be on medication for the rest of your life (there's no "most likely" about it). Synthroid is the standard, and works well for the vast majority of people. Some people need to use other meds, but I believe many of those people had thyroid issues other than cancer - Graves, Hashi's...autoimmune issues. I'm sure they'll start you on Synthroid. It works well for me...I am post-cancer.


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## vdshelton (Nov 17, 2011)

Awesome suggestions! I'm writing these all down to ask the doc tomorrow. To answer your question joplin, my PCP said that they'll have to completely remove it .

I also wanted to ask, did anyone have any trouble with their tonsils being constantly swollen (prior to their thyroid surgery)?

Every doctor's visit I've had (for a good while) the nurse practitioner or the doc commented "Wow, you have huge tonsils." My throat doesn't hurt at all, but they're large as they would be if I had strep throat or tonsillitis (which I've had have numerous times in the past - but they again, I've always had pain associated with it in those cases).


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## Lovlkn (Dec 20, 2009)

vdshelton said:


> Awesome suggestions! I'm writing these all down to ask the doc tomorrow. To answer your question joplin, my PCP said that they'll have to completely remove it .
> 
> I also wanted to ask, did anyone have any trouble with their tonsils being constantly swollen (prior to their thyroid surgery)?
> 
> Every doctor's visit I've had (for a good while) the nurse practitioner or the doc commented "Wow, you have huge tonsils." My throat doesn't hurt at all, but they're large as they would be if I had strep throat or tonsillitis (which I've had have numerous times in the past - but they again, I've always had pain associated with it in those cases).


Hi Val,

As far as thyroid replacement medications Levoxyl is considered generic and one of the better generic's on the market and well tolerated by most. I use Unithroid which is also considered generic without any issue but have found I need to supplement with some Cytomel which increases daily dosing 4 vs 1 times a day but I feel "normal" on it so no big deal.

Most important for you will to keep your TSH suppressed so be sure to ask for FT-4 andFT-3 labs in addition to TSH for proper replacement dose monitoring.

Sorry about he disappointing news you won;t be able to donate your eggs for awhile but after some time I imagine you will be able to as ladies who have had thyroid cancer still have babies.

{{hugs}}


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