Newly diagnosed with thyroid cancer and have 2 main concerns

I did from my endocrinologist who specializes in neck ultrasound

Another question I have - is about RFA .(radio frequency ablation) The more I am reading about it, the more it seems that RFA is now being used to shrink not just benign thyroid nodules but also thyroid carcinomas. Did any of your surgeons talk more about this option? (maybe you all have already discussed this and I might have lost track of the conversations)

Here's a discussion on RFA -

@cocha I was the same -- zero signs or symptoms, which I guess isn't uncommon. I was doing a routine recheck ultrasound on a small benign nodule on the right side that has been there for ages, and was absolutely blindsided when I was told there was a very suspicious nodule on the left. I came very close to cancelling the appointment because of a scheduling conflict and who knows when I might have made a new one ...

Active surveillance has been widely accepted and practiced in Japan for some time now and there is a growing acceptance of that approach for small, low risk nodules in this country. There are also studies/trials going on that are looking at active surveillance on PTC nodules up to 2 cm. They can stop growing, and even shrink sometimes, and never pose a problem. My doctor was telling me that the actual number of cases of PTC annually is likely drastically higher than reported cases -- without symptoms they go undetected, and often don't pose any risk to health or survival.

One of the reasons I picked my surgeon is because he, like some of the top of the field doctors and researchers in this country (Dr. Michael Tuttle at MSK, for one -- https://www.mskcc.org/news/msk-study-bolsters-use-active-surveillance-papillary-thyroid-cancer), believes that thyroid cancer is, broadly speaking, over-treated. From all that I have read there are some pretty rigid criteria for active surveillance to be a consideration -- some nodules just don't fit the requirements. We tried active surveillance, which I was totally on board with, but when my nodule grew a little my doctor changed his mind and felt more comfortable proceeding with the lobectomy.

Before I found out I would need the surgery I was going to participate in a study that Dr. James Wu (https://www.uclahealth.org/providers/james-wu) at UCLA Medical Center has been conducting , following patients opting for active surveillance. He's an endocrinologist there. For the study they need participants to go to LA once or twice a year for ultrasounds. I figured it would be a good way to get an extra set of eyes on this thing twice a year, plus be able to contribute to research. Not sure if you want to deal with LA, but just another resource, if you want to get a consult from someone who knows a lot about it, to see if you fit the criteria for that approach.

Re: natural remedies, I was already taking pretty much everything on the list you mentioned ... plus I don't drink or smoke, am pescatarian, exercise regularly, eat organic/tons of fruits and veggies and avoid the bad fats and refined sugar ... and I still got this. 🙁 I don't doubt that the alt remedies are good, but how much they can prevent thyroid nodules from growing or spreading, I just don't know ... but I am definitely being hyper-vigilant about keeping up the healthy stuff!

re: RFA -- I have read and wondered about it too, but none of my docs ever recommended it. I don't think I asked enough about alternatives to surgery and wish I had. I'd definitely be curious to know what your docs say if you decide to bring it up with them.

This is great information @lise01 . I looked up Dr. Michael Tuttle and he sounds like a doctor who is approaching medicine and his patients the right way. I wonder if he does second opinions, I would love to consult him.
I'll reach out to Dr. James Wu as well.

Another alternative remedy I have come across recently is an Ayurvedic medicine called Kanchanar Guggulu. Never heard of it before but the testimonials look promising. Amazon has several brands selling it. Yeah, about alternative remedies - there is not an exact science and there is some amount of trial and error involved in making them work in your favor.

I'm in the exact same boat as you about exercise and healthy food habits, and I still got this. But my stress levels were high for a long time and I attribute this aberration (cancer) largely to stress. 🙁

A lot of people have nodules and usually more than one is better than just one. Regular ultrasound to watch if it changes in size is advised . They do not always turn cancerous and if so thyroid cancer is one of the slower growing ones but it’s nothing to be complacent about if it is cancerous.
I had a total thyroidectomy after my third bout of Graves’ disease . It had nothing to do with the 3 nodules I had on my thyroid. They never changed in size over 30 years but the medications that I could use for my Graves’ disease ( 2 available) had other issues. When I was 30 after the birth of my son I had a racing heart , lost a ton of weight very quickly , could not sleep and then I had to sit up as I felt my heart was going to jump out of my chest, my hands were a bit shaky and when I tried to do anything I was exhausted. Blood tests proved I had Greaves disease . After 14 months of medication it went into remission and then a well meaning natural nutritional therapist told me I should take lugils iodine ( just a few drops a day) . It’s good for both overactive and under active thyroids . She quoted a book by a dr Bronstein or something, but it wasn’t . My endocrinologist said get off it straight away. I had another 15 months before it went into remission. It was the third time that things became much more serious as there are only 2 medications for it and the first one I had previously had success with I now had developed an allergy to and the itch was unbearable so I stopped after a few days and changed to the other one and I was having regular blood tests but within that one month it knocked out my immune system and I was in isolation getting intravenous antibiotics and getting me well enough for surgery. I was worried about the surgery but knew I had a good female surgeon that answered all my questions . They have a device that lets them know where the nerve to your voice is located which is extremely important and I was lucky she could save my parathyroid glands . They didn’t work for a couple of months and I needed calcium supplements and vit D until they did. I now take one thyroxine tablet in the morning. My best friends son was born without a thyroid and all babies are tested at birth .
What I am trying to say is that cancer of the thyroid is a slow growing one but still if it tests as cancer it is darn serious and a bit of this or that is not going to get rid of it . Be careful and cautious but if it’s cancer you don’t want to give it a chance to spread when it can be taken care of and you can live a carefree life . Once you let something spread its a very different story especially if a biopsy shows cancer. All the best and get extra options and tests if needed so you can make an informed decision. Good luck.

@poppy07 Thank you for sharing all of that. I totally agree with your perspective. I'm very careful about the supplements that I do take, in general, but have basically stopped taking everything until I can see my endocrinologist and have them weigh in on what is safe. @cocha I am a big proponent of finding more natural solutions to my wellness. And while they're doing amazing things with immunology and other new treatments, there is still no definitive "cure" for cancer, so my non-medical, layperson opinion would be not to lean on alternative remedies when it comes to a cancer diagnosis.

Re: active surveillance -- it is only right for nodules that fit very specific criteria, and it can ultimately end up being just a postponement of surgery, like in my case. I think it's important to look into all options and share them with whichever surgeon/endo you decide to go with -- they can let you know what they think would be safe to fold into your treatment routine -- but I agree with @poppy07 that you really don't want to let this thing grow or spread. I was told by all of the docs that I consulted that I don't have to rush into surgery (while consulting doctors, choosing a care team and weighing options), but that if surgery is the ultimate recommendation, I shouldn't put it off too long. Since my path report, I've wondered if the cancer cells that ended up in that little lymph node happened while we were just watching it -- but I will never know.

If Dr. Tuttle or Dr. Wu think you are a candidate for active surveillance, they will outline the pros and cons with you to help you make a decision. But if the general consensus is that the nodule has to come out, and you can still just have a lobectomy done, in my experience it truly has not been so bad. Sure, it sucks and I wish I didn't have this happen to me, but the actual procedure and recovery were really not that hard. 🙂

@lise01 and @poppy07 - good reminder to not become overzealous about alternative remedies and instead focus on getting the cancer out especially when there is consensus that the nodule has to go. So no more going down the alt remedies rabbit hole for me. 🙂 I am just getting more and more anxious as my surgery date is approaching and am becoming somewhat irrational and discombobulated I guess.

This is an amazing support group. Thank you all for your wise words!

@cocha I totally get it -- one of my first impulses was to explore what I could do on my own to slow the growth of this thing or even shrink it, especially when we were briefly pursuing active surveillance. So I don't think you are being even remotely irrational -- I think it's good that you are taking in all of the options and it's so totally understandable that you are so anxious. I don't like taking drugs but I got a few ativan tablets from my doctor before surgery to try to calm my anxiety, it was getting so bad. I couldn't sleep and my heartrate just wouldn't slow down. This whole thing has been a real mind *bleep*!

When is your surgery date? I can't recall -- did they say the plan was lobectomy unless something changes once they get in there?

I have done some research on RFA and here is what I have learnt -
* RFA is being offered in South Korea, Germany for not just benign nodules but even high-risk carcinomas and has been pretty successful. It saves your thyroid.
* The US is a little behind other countries with RFA. The doctors here are not trained adequately (probably the main reason why doctors are not suggesting it to us yet), and due to COVID many training programs had to be halted worldwide.
* It looks like in the next couple of years, RFA might be a pretty standard option in the US for benign thyroid nodules definitely but even for cancerous tumors.
* Some doctors in the US are treating thyroid carcinomas in the 1cm range with RFA successfully.

In my case, the surgeon has recommended surgery and says RFA is not a viable option due to the size and location of the carcinoma. 🙁