Hi @cocha , did he indicate what treatment he would want to pursue? I experienced a similar attitude with the endocrinologist and otolaryngologists/surgeons I have spoken to -- I think because these common papillary cancers are so treatable and have such a high survival rate (approx 98%) -- they just see a solution -- they see positive outcome. It's still scary to us and impactful to our lives, but to them I think it's pretty routine.

As far as choosing a surgeon, #1 is how many they do of these a year and what their complication rates are. Like @hopeful23 mentioned before, you want someone who does a high volume of these things.

Aside from the task at hand, removing any traces of cancer/suspicious tissue, there's a lot of sensitive stuff in there. I was most concerned about all laryngeal nerves, but particularly the recurrent laryngeal nerves. They can be tricky to work around as, from the way my surgeon described it, they can sometimes be almost stuck (I am paraphrasing) to the thyroid tissue. I am a singer so was particularly concerned about damage -- so it was upfront in his mind to preserve it. So that is something I would ask about -- their success rate with preserving both superior and recurrent laryngeal nerves.

I'm not sure if you are being given an option between lobectomy and thyroidectomy -- understanding the pros and cons of both is good to know, as they sometimes give you the option. (For instance, when a complete thyroidectomy is done they can do a blood test to monitor thyroglobulin levels and better detect possible recurrence. But with a lobectomy since only one side is being messed with, even if parathyroid glands, nerves are damaged you still have the other side intact and you may not need hormone supplementation.) Get them to list out all the pros/cons and share what, in their clinical experience, they think would be the best course of treatment for your particular case.

I will be asking this tomorrow at my post-surgical follow up appointment -- at what point and how do they determine that all the cancer has been removed -- particularly if they are finding any in lymph nodes. I've done a lot of research and it's still hard for me to wrap my head around completely. I'll share what I find out but I think it's a good thing to ask and have explained. I know they can't know if the cancer will recur, but at what point can one be confidently told they are cancer-free?

There are really so many questions -- but as hard as it was for me to ask doctors about complication rates, it's important to know. I actually had a hard time choosing between two otolaryngologists because they both have been doing these surgeries a lot for a long time and are highly regarded by their peers, had fellowships at the top cancer hospitals, do thyroid cancer research -- they are both just totally immersed in this. I went with the one who could do it sooner. I know some people go to general surgeons for these surgeries, which I think is fine if they do a lot of them, but I really wanted an otolaryngologist and specifically one associated with a teaching/research hospital so that I could feel confident that they are really on the front edge of research and treatment.

Advocating for yourself is so important too. If something doesn't register right, get on them about it. I bugged my doctor to do a follow-up ultrasound a few months early because I felt uncomfortable waiting. I had a not so great experience with the medical facility that first detected the nodule and wanted my doctor to get another ultrasound, and once he did he changed his mind about active surveillance and we did the surgery and found it had locally metastasized. I am so glad I went with my gut.

Anyway -- I could go on and on (there are so many moving parts to this) and not sure if any of this is addressing your concerns. If you have any specific questions please do ask!

Lise

Jump to this post