Newly diagnosed with thyroid cancer and have 2 main concerns

Hi @hopeful23 - how has your recovery been after the surgery?

I had a large nodule. When I went to be evaluated to see if I was a candidate for RFA, the doctor did a fine needle biopsy and sent a slide for Affirma testing. The results showed that I had a 50% chance that I had Hurthle Cell Carcinoma. The doctor said I was not able to have RFA because the cells could migrate out as the needle is withdrawn snd if this was cancer it could cause it to spread.
Since it’s a new procedure for the thyroid, it might just be that the doctor did not want any added risks. Since Hurthle cell carcinoma can “ travel” into lymphatic or circulatory systems, I think it’s best not to take this risk, so her decision made sense to me. I think it was good to look into it however my situation just did not qualify.
I had surgery for lobectomy and the results from Affirma testing were confirmed that I had Hurthle Crll Carcinoma.
You mentioned that the RFA is being done successfully in other countries on people with carcinoma, however the longitudinal studies might not have been done yet to see if the cancer cells migrated. I would be cautious with interpreting articles where they say they successfully treated patients with cancer using RFA without longitudinal studies monitoring the long term effects. “Treating successfully” can be about the procedure….it shrank the nodule without removal; but did the cancer go away? Did the person develop cancer outside the thyroid?
I think Radio frequency ablation sounds great for people who are not at high risk of cancer. For low risk thyroid cancer, maybe it would work to ablate cancer cells in the process, but some cancers would appear to be too risky for potential cell migration.
Good luck!

Hi Cocha,
I'm doing well, thanks. It's been 6 weeks and my recovery has been pretty easy. My scar is almost invisible, however the wrinkles near it are not! This week, I go back for some follow-up blood work, which should show a) if my TSH level is in a decent range, and b) whether my calcium level is still high and suggestive of hyperparathyroidism. One of my parathyroid glands in my remaining lobe is enlarged, so I might need more surgery to remove it.
On another note, I happened to look at my medical claims today and was shocked to see that the bill for my outpatient lobectomy was $20, 468! Granted, I only owe $280, but even so...that number is insane. How are YOU doing? I'm trying to keep up with everyone here, but it's hard to keep track of all the moving pieces. I am so impressed by all the research and self-advocacy everyone is doing.

Good to know about your easy recovery @hopeful23 ! Hope you keep getting better steadily.

Wow, the lobectomy charge is indeed insane!

I am waiting for my surgery which is coming up in a couple weeks. I am pretty stressed though because I am getting the sense from my surgeon that my case is not very straightforward. 🙁

@koh Thanks for the RFA longitudinal studies clarification.
Hmm, I didn't know cancer could spread that way ("as the needle is withdrawn"). By that token, a biopsy could also help a cancer to spread?

Hi Cocha,
I wondered about that too but maybe the fine needle and the short amount of time the needle is in the thyroid reduces the risk. After the evaluation for RFA I started having symptoms consistent with parathyroid issues and I asked my doctors if something could have changed due to the FNA. When I had surgeryI was told that one parathyroid gland looked very bad and was removed but did not end up having cancer. I still think it might have gotten nicked or damaged during FNA because I never had any symptoms until that point ( other than a big nodule on my neck😆)
Good luck!

Hey koh, can I ask what your parathyroid symptoms are/were? Do you know what your calcium level is?

Cocha, what did your surgeon say that made you think your surgery will not be straightforward?

@koh I felt the same after my FNA biopsy. Before that biopsy my ultrasound (taken a week prior) showed NO lymphadenopathy (read by a radiologist). While the doctor was doing the US guided FNA also they did not see any suspicious lymph nodes. However, a couple weeks later not only did I have tenderness and pain in the area but when I saw 2 surgeons who both did ultrasounds they both saw suspicious lymph nodes. And all the doctors tell me that nothing has changed due to the FNA biopsy. 🤔🤔

@hopeful23 the surgeon said the location of the tumor is tricky, there are suspicious lymph nodes, there will be multiple incisions, it might be a full thyroidectomy and so on. I'm very stressed. 😟😟

Cocha, I hear you and understand your feelings. To deal with with my pre-surgery anxiety, I
tried to put all my faith in my surgeon's skills and believe that he would make good decisions once he opened me up. I asked every possible question I could think of about the surgery and possible outcomes. I read and reread all of the pre-surgery guidelines. Then, after all that, I tried to put it out of my mind whenever it crept into my consciousness. I didn't want to spend my days worrying when that wouldn't change anything. I nurtured an attitude of "no matter what, I will be okay." Feel free to vent here whenever you need to. You are not alone.

@steph45 How elaborate was the lymph node mapping? How is it different from the initial ultrasound that we get done which shows a thyroid nodule? Does it also involve a biopsy?