# Okay, help me - what do I need to know?



## redmoon (May 14, 2012)

My husband and I are going to make our list of things we want to ask the endocrinologist (just had a cancer diagnosis last week and this will be my first appointment with anyone, post dx). This will be our first time meeting him/her.

I am not versed in all of the acronyms, this is all VERY new to me. What would you suggest asking about as I go forward?

I have a papillary carcinoma but no other thyroid issues.

Someone posted about knowing whether their surgeon was experienced- what else would be good to know?


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## webster2 (May 19, 2011)

Yes, asking about how many of these surgeries they do each week. You might ask if they will prescribe replacement right away or wait until the need for RAI has been determined. Other than that, because you don't have thyroid issues but do have cancer, I can't think of any. Best to you, as a surgery it is not so bad. Just rest and drink a lot of liquids!


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## joplin1975 (Jul 21, 2011)

In addition to the experience question, I'd ask how often the surgeon's patients have vocal chord or parathyroid damage. Do they use a drain? Stitches or glue? Will you have an overnight stay? And will they perform a post-op whole body scan? Ask they to describe their follow up plans.


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## redmoon (May 14, 2012)

Joplin, what is the significance of a drain, stitches or glue?

Will the endocrinologist be able to answer those things or should I just talk with the surgeon?


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## joplin1975 (Jul 21, 2011)

Nothing, really. But if you are like me, I'd want to know. I really didn't want a drain because I am a total freak and the idea just skeeves me out.  So I really "needed" to know.

Stitches vs. glue also doesn't really matter, but again, it's just knowing. I swear I thought my surgeon said glue, but then when I saw my neck and saw stitches, I was all "WHOA, what's that!!??"

Ummm, actually, most of these question would probably be best for your surgeon. I'm sorry I was reading this as your endo doing the surgery. Since it's just the endo, I would focus more on how s/he will be medicating you post-op, how you will be monitored after surgery, and how they will determine if RAI is needed.


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## webster2 (May 19, 2011)

I have had stitches and glue, each time a different thing. It didn't seem to make much difference as far as appearance of the scar. The glue felt kind of odd as it started to lose its adhesive quality. It was loose and tight at the same time, weird.

I think it does help to ask lots of questions to make yourself feel as comfortable with the situation. Best to you!


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## teri2280 (Feb 7, 2012)

I agree with finding out about hormone replacement (whether or not it'll be right after surgery, especially). Your story sounds so much like mine it's not even funny ("normal" tests, had a goiter that turned out to be cancer), and I honestly truly wish I HADN'T started on the levothyroxine post-TT just to that I wouldn't have had to experience the crash of everything. That and it would have made this whole part of the process go a LOT faster. Attempt to find out for sure if your endo thinks you'll need RAI. From someone who experienced the crash of "going hypo" for RAI after getting used to meds, it's SO not worth it, and if I could do it all again, I would have not even started on the dang levo. (RAI this Friday for me, and I am LITERALLY counting down the days until then so I can get back on my meds!) If you DO need RAI, you might still have to be hypo for about a month to get your TSH up where it needs to be, but having your surgery, for example, tomorrow, then waiting a month for RAI will be a lot less time consuming and stressful than feeling "normal", then "better" (in my case at least, while I was on Cytomel for 2 weeks), to "crashing". My total time between just TT and RAI will be 11 weeks, but if it's possible to do it sooner, great! (I was off work for just under 3 weeks post TT because my job includes lifting heavy freight and stuff, and now again off for just under 2 weeks because going hypo is affecting my job performance. If I could have just taken 5 weeks off all in one round, it would have been so much better.)

Depending on where you live and what endo you're seeing, your endo MIGHT be your surgeon. I lucked out and had an endocrine surgeon do my surgery, and if I didn't live over 2 hours away from her, she WOULD be my normal endo, but I can't drive over 2 hours just for some blood tests. Your endo might also just be like mine was, told me to pick a surgeon, let him know who I picked, and he'd set up the appt. for me. Or he might just refer you to a local ENT (ear, nose, and throat specialist), and call it good. (If you're in Ohio or NW Pennsylvania, Dr. Kresimira Milas at the Cleveland Clinic is ABSOLUTELY FANTASTIC! I absolutely LOVED her. She's an endocrinologist who performs her own surgeries, and, well, WOW. She LITERALLY created a surgery day just for me, because she didn't want to wait to get it out. I only had a 3 week wait in between my initial consult with her and my TT. It's just too bad for me that she's in NE Ohio and I'm in NW Ohio, or she WOULD be my "normal" endo.)


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## teri2280 (Feb 7, 2012)

Oh. One more thing you MIGHT want to take into consideration. It's something that factored greatly into my decision of picking a surgeon from a list of 10-12 of them. Age. I'm not sure that you feel the same as I do on this topic, but I felt a LOT better with a surgeon in their 40s vs. a surgeon in their 60s. Yes, that surgeon in his 60s has done a lot more of these than the one in her 40s, BUT that surgeon in her 40s has done more of these on "today's technologies" than the one in his 60s. Like I said, you might not agree with me on this topic, and I know that, but if you do, I don't want it to be something that you accidentally overlook, and this is 100% just my own personal opinion. Just something to think about. Personally, sacrificing 20 years of practice is worth it to me to know that someone was actually trained on today's technologies instead of having to re-learn them. (And this wasn't just a factor for my TT. It was a big factor when I had to have back surgery about 3 years ago too.)


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