Newly diagnosed with thyroid cancer and have 2 main concerns

I am deliberately not doing a whole lot of research (like I would have done in the past for any family or friend's health issues) because it is so easy to go down multiple rabbit holes with Dr. Google. So I am reading one or two threads here on Mayo Connect, and a couple other websites. But if others who have gone through thyroid surgery can provide their input on who they consider as top thyroid surgeons / hospitals in the US, that would really help.

E.g, I saw @lise01 mention Clayman Thyroid Center. What are your opinions about that center?

Any others that you think are leading centers for thyroid surgery?

Thank you all!

@cocha I had been looking at Clayman Thyroid Center, even though they are on the other side of the country from me, because Dr. Clayman was the head thyroid surgeon at MD Anderson for like 25 years before starting his own clinic focusing completely on the thyroid in Florida. They seem to run a really tight ship and get excellent reviews. Their goal is to make sure they get everything done with one surgery and are very thorough about collecting as must information about what is happening in there before surgery.

I can't actually recommend them as I did not get treated there, but I did speak to one of his surgeons there for about an hour way when this began and really liked her. She explained to me that they map out your whole neck before surgery, biopsy anything that catches their eye before going in and also have a pathologist there during the surgery to test any suspicious tissue/nodes, and basically only close you up once they are confident they got everything. They have relationships with some surrounding hotels that are equipped with any post-surgical needs you might have. It sounded kind of concierge and almost too good to be true but I brought them up with the first surgeon I had spoken to (who I loved, but who couldn't get me in until end of June) and he said Dr. Clayman is the real deal.

Ultimately, I didn't go that route because they are so far away -- but have thought about them again since this all has been happening. They seem to err on the side of getting the cancer out, and it seems to me they will take more out rather than less if they think it will spare the patient more surgeries. I think at first I wanted the least done but now I'm not so sure ...

I can't really speak from experience about anywhere else, only ones here in San Diego. My friend has been getting treated at Memorial Sloane Kettering in NY for really aggressive breast cancer for the past 7 years -- she says they are amazing, but talk about assembly line! She said you REALLY have to advocate for yourself to get attention because they are so busy. My guess is all the big players (the MD Andersons and Cleveland Clinics) are going to be slammed.

Hi @lise01 , it might be worthwhile looking at this study published recently in JAMA which concludes that -
"Results of this cohort study suggest that patients with PTC and lymph node metastasis had a similar RFS after lobectomy vs those who had TT. If radioactive iodine ablation is not going to be performed, lobectomy may be an effective alternative option."

I'd be curious what your surgeon thinks about this. Maybe a lobectomy was enough in your case?
https://jamanetwork.com/journals/jamasurgery/article-abstract/2799003
https://jamanetwork.com/journals/jamasurgery/article-abstract/2799009

Did any of you get lymph node mapping done prior to the surgery?

Hey @cocha thank you for the links! I've been reading similar findings in other studies too. I think the lobectomy was the right choice but just wonder if more could have been done diagnostically prior to surgery to get a better idea if there were any lymph nodes involved, considering how common it is for early lymph node micrometastasis with PTC. Ultrasound, cat scans, mapping the neck and lymph nodes, diagnostic low dose RAI, lymph node biopsy ... there must be some way to get a bigger picture of what's going on in there.

I am seeing my surgeon today to see what he is thinking -- he was going to present my case to his tumor board on Monday.

How are you doing?

I am waiting for my surgery, somewhat anxious. 🙁
I have also asked my surgeon to do a lobectomy, unless they find really bad stuff when they go in there.
From the multiple surgeons I have talked to, apparently they cannot tell from the ultrasounds and other technologies available as of today whether there is a wider spread without actually looking in there when you are in OR. So I really wonder how they would tell for sure after the lobectomy if the cancer is spreading. At the same time, I am not at all in favor of taking out an unaffected side of my thyroid.
At this point, I am just exhausted with going back and forth with the doctors with questions.

@lise01 Please keep us posted on what you learn from your surgeon. Also, how has your recovery from the surgery been so far? What medications have they put you on and how is your body reacting?

Hi @cocha, when is your surgery? I remember that wait! I said the exact same thing to my surgeon...lobectomy unless you see something that makes TT the better choice.

I had a sign in my kitchen when my kids were younger that said "Raising teenagers is like nailing jello to a wall," and I have to say that the thyroid CA journey feels very much the same. It is so hard to prepare for something when you don't have all the information.

@lise01 I'm thinking of you too. Please let us know how you're doing.

Hey @cocha and @hopeful23 Sorry for delayed response -- other life stuff/work crazy! @hopeful23 I like your jello analogy!

My recovery has been good -- the surgery was way easier than I had expected and my scar just a month later is very small and faint. Lymph nodes are still a little bit tender (they did not like what he did in there! ) but nothing was ever actually painful. I am not on any medication -- I have an appointment in August to finally see an endocrinologist who will run the blood tests and see if my remaining lobe is producing adequate hormones. I had a blood test a couple weeks ago and levels were normal still. Energy levels are getting a lot better and my neck is

My surgeon said that they don't typically take any lymph nodes or do neck dissection in cases like mine, unless there are any that look suspicious. He also reiterated that it is quite common for some microscopic cancer cells to make their way into the lymph nodes in the central compartment and was surprised that pathology picked it up. He added that even if there are some trace cells, in most cases nothing will come of them, so recommended no further treatment, just the lifelong surveillance.

He also presented my case at his tumor board review meeting, and his colleagues agreed with no more treatment ... so that made me feel a bit better. I've had several doctors agree that my risk is low for any recurrence and if it happens we will catch it. I told him I was paranoid that in between rechecks it could spread -- especially to nearby places like the trachea -- and he said it wouldn't. Pathology revealed that the PTC I have is the most common and unaggressive and the rate of cell division is really slow -- so it just doesn't behave that way. He said, "that is not your disease."

So hard to wrap my head around still -- having this disease. The surgery was really a piece a cake and if I have to go through it again I am not afraid. Learning how to live with this and not let it depress me and consume my waking thoughts -- that's the tough part. It's exhausting. I'm hoping that over the next year my rechecks look good and that I can really accept and trust that I'm going to be okay. In the meantime I think I am going to try to find a therapist who deals with people living with a cancer diagnosis and see if I can evolve my coping mechanisms a little. I'm very uncomfortable with things being out of my control in my life and like having my ducks in a row and this definitely throws a wrench into the works ... so have to work on not obsessing on things I cannot change.

Any updates for either of you?

I realized I never finished a sentence above -- I began writing that my neck is ... and got distracted! I was going to say my neck is healed enough for me to exercise as much as I want -- no restrictions.

Hi @lise01 and @hopeful23 - thank you for the updates. I like your jello analogy @hopeful23, 🙂

@lise01 your update is very promising. If the tumor board feels that the chance for recurrence is low, then there is probably not much cause for worry.

I am still very perplexed with this diagnosis of "cancer" for either of us. In my case, (as with others in this thread) as I said earlier, I have no symptoms. I am going about my day very normally. Traveling, hiking, working - with no sign of fatigue whatsoever. Sometimes, I really wonder what would happen if I didn't get the surgery. Did any of you wonder the same? Also, have you all looked at alternative remedies for keeping your thyroid healthy? I heard about turmeric, spirulina, garlic, selenium being good for shrinking thyroid nodules.

Is thyroid cancer being over diagnosed and over treated? 🤔🤔