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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
@lise01 sorry looks my earlier post didn't go through.
I was feeling pretty normal right after the surgery which happened just over a week ago. But am having some trouble sleeping in the night now. My endocrinologist called for a Thyroid screen test a week after the surgery and says I have mild hypothyroidism now and that I should take Levothyroxine. I am not sure if these TSH levels readjust a month or so after surgery or if I have to be on this for the long term. I'll find out more when I meet the endo.
The lobectomy surgery itself seemed pretty easy to recover from. But I'm not sure why no lymph nodes were taken out given the fact that my surgeon seemed to think that at my age the cancer can get aggressive and they could see suspicious ETE in the ultrasound. The pathology report summary which just came back seems cryptic. Most of the categories say "not identified", instead of "positive" or "negative". I'll know more later this week when I meet both the surgeon and the endocrinologist.
Replies to "@lise01 sorry looks my earlier post didn't go through. I was feeling pretty normal right after..."
Hi @cocha Sorry again for delay. It's been a crazy couple of weeks. I had a lot of not identified on my report as well -- what I read when trying to interpret my report was "Negative findings are usually reported as not identified rather than absent because absence of evidence is not evidence of absence and acknowledging the insight that in medicine the latter can rarely be provided." So ... I am taking those as negative, knowing that it is always possible that something was missed/not involved in the sample they had. It does seem good that once they got in there they did not see a need to do anything more surgically aggressive -- have you been able to get any elucidation on the statement they made about possible ETE, why they ultimately chose not to remove any lymph nodes, or anything else that might clarify things for you (and hopefully put you at ease)?
I had an appointment with a new GP yesterday who was telling me that the endocrinologist will help me with managing thyroid function and hormone levels but that they would not be the ones to do any sort of lymph node mapping or assess any possible remaining lymph node involvement, so she actually got me an appointment with the head of oncology there to talk to about my situation. I think you are right about your comment about microscopic traces of cancer cells -- what my surgeon found could very well be clinically insignificant, but she agreed better safe than sorry to get an oncologist's eyes on things. So I see him at the end of July.
I did have my THS level checked this week and it was at 3.1 ulU/mL -- so normal range, though higher than it's ever been (it historically always comes in under 1.5 and was at 1.2 a week after surgery). GP said that I wouldn't be put on Levothyroxine unless it were significantly higher than 3.1, but she reiterated what my surgeon said -- that levels would most certainly be fluctuating for quite a while after surgery and that it's totally normal to be experiencing some symptoms despite the test result.
I am not happy about gaining a solid 4-5 lbs over the last 8 weeks, but I guess vanity needs to take a back seat for a while. 🙁 Yay elastic waistbands!
Hope everyone is doing well.
Lise
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Make sure you massage the scar and use scar cream for 3 months every day. It works. I have no scar.