Newly diagnosed with thyroid cancer and have 2 main concerns

Hi @reen88 - RAI treatment after a total thyroidectomy is not required in all cases. It is done only if your doctor sees evidence in the pathology reports after surgery that the thyroid cancer has spread outside of the thyroid.

Hello @lise01, @hopeful23, @koh -

Just checking to see how things are going with you. Please keep us posted.

My surgery went well, now waiting for the pathology reports.

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.

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!

Hi @koh Thanks for all of the info! It all confirms what I have been coming to understand. It's been over six weeks now since surgery, so feel like it's approaching the time to get a check up. I'm on the wait list with endocrinology -- they are extremely backed up I guess. I think I will reach out to my surgeon to see if he can at least order some blood work. Aside from the little hot flashes I have gained a couple of pounds and have insomnia -- but that could also be stress. My lymph nodes around my whole neck are all still a bit inflamed -- not sure how long that takes to settle. It's really hard to distinguish between what is stress induced and what might be thyroid related. I don't feel right, but I know stress and anxiety can have a tremendous physiological impact.

My surgeon and his tumor board agreed on no further treatment but he said he was interested to see what my endo thinks about the micrometastasis to the lymph node -- so it's a little frustrating that there isn't a way to get in sooner. It would definitely be nice to have someone on the sidelines to guide me through this/monitor me.

I'm sorry that it's taking so much time to dial in the Synthroid. A couple of people I have spoken to have done really well with it right from the get go, but it's seeming like for a lot of people there's quite a bit of trial and error getting levels right. I hope you see some improvement with this adjustment. Any idea yet what they want to do about the enlarged lymph node?

Hi @lise01, Have you mentioned the long delay to see endocrinologist to your surgeon? If surgeon is interested with what the endocrinologist thinks about the situation, maybe he can call the endocrinologist and get you in sooner ( the top of the wait list instead of the “ new patient list.”)
As for enlarged lymph node…. It’s consistently enlarged but not big enough to do anything. Dr. said it was fine but Ibthink that’s because it is still under the size where they often biopsy…. We’ll see!

@koh He knows how long the wait is and back in March said he would talk to his colleagues about getting me in sooner (I made the appointment at the end of January!) -- but nothing so far. I'm going to bug them again.

All the waiting and watching and we'll see's ... I guess this is the new normal for now after diagnosis. Hopefully in time the questions and concerns we all have will get calmed and resolved some and this doesn't have to be in the forefront of our daily lives. My mother has a few friends through cancer fundraising she does who have had various manifestations of thyroid cancer and treatment -- a couple of them 30-40 years ago -- and they take their pill and just live their lives now, so it's important to try not to get discouraged!

Agree with @koh - the endocrinologist should be seeing you sooner, and maybe your surgeon can help with that. I am seeing mine next week.

@koh and @cocha My surgeon ordered bloodwork for me and I got an appointment with a GP to at least check me over, but no luck so far on getting in with endo there. I spend a few hours calling around and managed to talk to someone very helpful at Scripps MD Anderson. They were sympathetic at least -- they fit me in to have a telemedicine visit with an endocrinologist on July 10th.

It's amazing to me that they would perform this surgery without any plan in place for a timely follow-up. Cutting me loose for four months after surgery just feels way too long.

How are you feeling @cocha since your surgery?

@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.