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Experiences,age 65+ - recent papillary cancer on active surveillance
I am a 72 yr. old man with recent papillary cancer diagnosis in one nodule on left side thyroid. ( approx. 13mm x 14mm x 15mm.) GP and ENT tending to recommend lobectomy, but my request for Active surveillance not yet supported. I am trying learn about trending of growth or not of similar from ones on active surveillance over time in that age group to consider the risks of treatment urgency vs waiting. Major concerns regarding surgery are the aftermath of levotyroxine side effects regarding fatigue, etc. for someone that wants to stay active in endurance activities and sports as long as possible.
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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