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Newly diagnosed with thyroid cancer and have 2 main concerns
Thyroid Cancer | Last Active: Oct 24, 2023 | Replies (140)Comment receiving replies
Hey @cocha was thinking about you and how things are going for you and got an email that you updated. Sorry I haven't been quick to respond here -- dealing with a lot of stuff and life changes. When it rain it pours!
I'm glad that it went well! When was it? Did they end up doing a lobectomy and did they end up taking any lymph nodes? How are you feeling?
I'm hanging in there but very anxious. Continuing to heal but really want to get in with an endocrinologist asap. I haven't been able to get an appointment until August, and in the meantime feel like I'm in limbo. While the nodule is gone I am really nervous that there is more cancer in my lymph nodes. My surgeon said that even if there are any microscopic traces of cancer cells in the central compartment he's not too concerned but I'm really having a hard time feeling comfortable with that. I could be cancer free at the moment, but maybe I'm not, and I would like to know one way or the other. I'd also like to know how my hormone and calcium levels are (since he took out one of my parathyroid glands). Having some hot flashes so wondering if it's because I'm running on half a thyroid. It's been six weeks since surgery and I feel like someone should be checking me out! 🙁
I'm very glad the surgery is behind you and really hope your pathology results end up being the best case.
Replies to "Hey @cocha was thinking about you and how things are going for you and got an..."
Hi @lise01, regarding your surgeon's stand on the microscopic traces of cancer cells in the central compartment - I have been reading the same in the literature around thyroid cancer, in the recent guidelines as well as in the WCTC 23 (world congress on thyroid cancer) talks. I know it's easier said than done but I would not worry about it. Hope your endocrinologist can weigh in on this soon. Good luck!
@hopeful23 how have you been doing?
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Hi @lise01 and @cocha
From what I understand, your blood levels would take 6-8 weeks after surgery to establish their levels, however I am not sure I understand why you would be directed to wait until August to see an endocrinologist unless your surgeon is doing bloodwork before then. Even if the blood levels are not “established” yet, the side effects which could go along with the fluctuations might be manifesting. From what I understand, after a lobectomy, they want to give the remaining lobe a chance to start producing enough thyroid hormones….sometimes the remaining lobe can produce enough hormones and sometimes it cannot. Although the doctor might want to wait and see if your thyroid lobe is able to work without adding medicine, it might be nice to have a doctor familiar with the situation, as you deal with the changes, in case there are signs that your lobe is not able to “pick up the work” of the whole thyroid. The symptoms of thyroid imbalances are not easy to deal with so waiting until August seems long….maybe you can move your appointment up?
As for me….I’m still trying to get regulated on Synthroid….it can be tricky! I seem to have quite a few symptoms that make me concerned. Although my blood tests fall in the normal range, the high end of the range might be too high for me, which might be causing some of my symptoms. My doctor just increased my Synthroid a little (add additional half pill 1x per week) to see if this helps with some of the symptoms. The last few ultrasounds mentions a large lymph node, which is concerning, however this might be unrelated to cancer…lets face it, it’s hard not to worry.
Good luck!