Experiences,age 65+ - recent papillary cancer on active surveillance

I am a 68 year old woman - I ve had a partial,then total thyroidectomy (diagnosed with tall cell papillary-more aggressive than regular papillary), and 2 neck dissections for (so far) limited lymph node involvement. You will want to know the type of thyroid cancer and mutations, which will help determine how closely you are followed probably. I do feel it is important to be followed at a larger research hospital with experience with thyroid cancer. I am on levothyroxine. Am I more tired- yes probably, but I push myself and walk 2.5 miles most days, still work part-time, and hike whenever possible. If you only have part of the thyroid removed, your experience may be different. As many people have said, you also want a surgeon who has experience doing your surgery. Everyone s journey is their own, and different.....I'm thnakful to be alive, and try to live my best life every day... I wish you the best....

Hi, your nodule seems quite small so surgery seems premature….. thyroid biopsy’s can have false positives. It would seem to me the doctors could have suggested watching and waiting where you have scans and bloodwork to see if the nodule is growing rapidly. You might also be a candidate for RadioFrequency ablation (RFA) to shrink the nodule without removing the thyroid. When I was evaluated for RFA they sent the biopsy out for Affirma testing which has the highest percentage of accuracy for predicting cancer.
In my opinion, it is always better to explore all other options to having surgery to remove the thyroid because it can be very difficult getting regulated on medication ( I had a lobectomy and it has been very difficult to find medication without a lot of negative side effects). Good luck!

…. I forgot to mention. I did active surveillance for 10 years with cancer hospital. The nodule had gotten very large and I was told I was not a candidate for RFA because the Affirma testing identified having over 50% chance of Hurthle Cell Carcinoma. In my opinion, going to an endocrinologist affiliated with a cancer hospital is a better way to go….. they see cancer all the time and would be able to advise you about your circumstances.

@sweettoothd
Thank you kindly for your feedback and your own experience. I appreciate it.
dogport

@koh
Thank you for your personal experience and persepective.
I am considering requesting the RFA option, and while I'm wanting to let a bit of time go by on surveillance to get an idea of the growth rate, I feel it might be worth applying for RFA sooner than later. Thanks again.
dogport

@dogport
This post may be coming a little late, but I'll share in case it helps: I'm a 69 y.o woman diagnosed with PTC in 2015. 2-3 nodules biopsied at that time, all < 1 CM; other nodules were present but not biopsied. With the support of my surgeon at the major cancer center where I'm seen, I opted for active surveillance. I've continued annual screening and meeting with the surgeon or his PA for 11 years now. The largest nodule is just over 1 CM now and there's been no evidence of spread beyond the thyroid. The lifestyle changes I made at the time of diagnosis were to change to a keto diet, add a few supplements, and eventually to increase my exercise. I get my scans at the major cancer center, but my endocrinologist is at the clinic where I get the rest of my regular care, and coordinates with my team at the cancer center for blood tests.

My team is still satisfied for me to continue active surveillance. My thyroid function has remained normal without medication these past 11 years and my quality of life is very good. Like you, I wanted to continue an active and productive life without trying to balance thyroid medication, which is why I elected active surveillance. A couple of years ago I was evaluated for RFA but because of the location of the largest nodule, RFA was deemed too risky. I still hope for a treatment that might shrink or get rid of my nodules without side effects or damage to my thyroid. Until then, I'm happy to continue under annual observation with my very supportive medical team.

I'd love to connect with others who are under active surveillance.

Best of luck to you in whatever option you choose.

@texan2
That's great to hear your getting support for surveillance.
So, in my case, after a repeat ultrasound to clarify the location and size of the cancerous nodule, it became apparent that my nodule is very close / posterior in position near the recurrent larangeal nerve, thus prompting the recommendation for surgery. I would have preferred to go the active surveillance route after all the research considered, however in weighing the risks, I've opted for a hemi-thyroidectomy. It's not the surgery that has ever concerned me. It's more the side effects associated with the levo thyroxine follow up. Hopefully the partial surgery might lessen the impact of that.
thanks,

@texan2
I also am on active surveillance, (at Mayo Rochester). I have multiple nodules, the largest being 0.7+ cm solid, which was biopsied this past Weds, showed benign so far. Like you, I'm happy to not have to deal with getting 'the right mix' of thyroid meds. My TSH w reflex to ST4 bloodwork showed my numbers on the lower end, but still within acceptable parameters. In Oct 2024, I had 2 tumors removed from my left kidney and they are actively watching a 1.3cm cyst on the other kidney. Kidney function is still good. When metastatic cancer spreads to the thyroid, I learned that 50% of the time it has come from kidney cancer.
Question, where, exactly is the largest nodule located that deemed it too risky for RFA?