Small papillary thyroid cancer

I have had papillary thyroid cancer with a 2 cm nodule on the left and minuscule nodules on the right. It was recommended by my Mayo docs to have a left lobectomy and monitoring the right side. My understanding is papillary cancer grows slowly and is the least risky cancer and easily treatable via surgery. I know it's not easy knowing there is some cancer remaining that may or may not present problems in the future, but I wanted to preserve my thyroid as long as possible and avoid thyroid drugs, if at all possible. I'm told the bi-annual monitoring is sufficient to see if it grows at which point action may or may not need to be taken.

Welcome @david67. I see you already got a helpful response from @mjay.
I'm also tagging @jlanderson76 @mnroni1 @blulilbaby @aejohns @trod @botts @angie7302 to bring them into this discussion.

I can understand that you're concerned about the watch and wait approach. Have you discussed the pros and cons of surgery with your doctors and been able to share your fears openly?

Hello everyone.I have been diagnosed with papillary carcinoma 3months ago,0.7cm in each side,left is FNA ,recommended total thyroidectomy,but I decided to active serviliance ,changed my diet,lost 9lbs,I dont know what is right or what is wrong anymore.I am US citizen,but 4 years ago came back to Armenia,where I was born and raised.Looking for similar stories here.Hope everyone will be healthy and happy.

Hi @tammy80
From what I understand, doctor’s use active surveillance to see if the nodule grows quickly. I was told that if it grows quickly, than it is often cancerous. I was also told that thyroid cancer usually remains encapsulated within the thyroid gland. If it grows and starts to interfere with other areas it becomes more of a problem.
Have you had Affirma testing with your biopsy? From what I understand, it has a very high rate of accuracy for predicting cancer. Have you considered being evaluated for radiofrequency ablation (RFA) of the nodule? It appears to be a fairly new procedure, however getting evaluated might be worth it to see if you might be a candidate. From what I understand, RFA will shrink the nodule whereby preventing it from interfering with other structures in your neck.
In my opinion, it is good to look at all your options instead of just going forward with thyroid removal…..Synthroid can be tricky to get the right dose.
Good luck!

Just had consultation with my son's surgeon who recommended if surgery at all, total thyroidectomy is best as going in for a second surgery later, there is a huge risk of nerve damage and other issues in a second surgery. However, cancer hasn't been ruled out but not proven yet. Has had a huge goiter growing out of the thyroid for several years....11 biopsies with results extremely suspicious of papillary thyroid cancer. Son is 55 years old, healthy otherwise. Seeing the second surgeon for consultation soon and we will have even more questions but probably going forward with total thyroidectomy just to be safe as there is some cancer history in the family.

Who I would like to hear from are middle aged patients who have had a thyroidectomy and how the procedure went and how they managed afterwards. With current affairs as they are, one thing my son is concerned about is if your life depends on getting the medication after surgery, what if it suddenly becomes unavailable? What happens then?

@shamb52 Forgot to add that the Affirma testing came out 50% for the one side where biopsies were benign on small nodules and on the other side, Affirma test was 90% which prompted the surgeon to recommend total thyroidectomy.

@koh The nodule in my son's neck (thyroid) has been growing for several years and sometimes painful. Biopsies showed strong "possibility" of thyroid papillary cancer and Affirm testing showed 90% and also probably centralized in the nodule/goiter. He is on medicaid currently. Not sure if medicaid will approve radiofrequency ablation although it would seem that would be cheaper than surgery. He would surely go for that if it was offered but surgeon recommended total thyroidectomy based on the Affirma result.

I had a total thyroidectomy due to papillary thyroid cancer when I was 40-which was 11 years ago. It took about 2 weeks to heal, but after that I felt fine. I've been lucky and my thyroid medication has always worked for me. (I'm a female). It did take a lot longer for the incision to heal, and it was annoying having complete strangers asking me multiple times a day what had happened to my neck, or telling me their stories about their own thyroid cancer or other neck surgeries. Overall, I was happy that I had the cancer removed. My younger brother also had papillary thyroid cancer at age 40 (6 years ago). He was living in Seattle, and his doctor only removed 1/2 of his thyroid as it wasn't clear both sides had cancer. The goal was that he wouldn't need thyroid medicine at all, or only a low dose. He ended up needing a low dose of the medicine. 1 year later, they discovered the cancer was in the remaining portion of the thyroid, so they took the rest of his thyroid out. He was annoyed he had to have 2 surgeries in 1 year (and pay for 2 surgeries). He said in hindsight he wishes he had the total thyroidectomy to begin with. BTW-there is no history of thyroid cancer in our family prior to this. From a mental standpoint, for me, it felt better to get all of the cancer out rather than waiting for it to get bigger through monitoring.

@shamb52
I had a similar scenario….I had a very large nodule growing and the biopsies were “inconclusive.” Which appears to mean, some were negative and a few positive. In my opinion, surgeons do surgery to correct the problem and minimize the risk. However if the surgery shows that the nodule was benign, you have the future of medication and never really needed the surgery other than the fact that the big nodule crushed the structures in the area.
Have you considered having a second opinion with a surgeon who does radiofrequency ablation(RFA)? Having the nodule ablated, will cause the nodule to shrink and allow your son to avoid the removal of his thyroid. In my opinion, this would be a great option!!
I had a large nodule and was being monitored by a surgeon at a cancer hospital for 10 years. I read about the RFA and found a surgeon who did the procedure (at another hospital nearby) . I was trying not to have my thyroid removed because of the location and possible issues with speaking (it could be career ending). My doctor thought it was worth looking into.
To qualify for (RFA) the new surgeon did another biopsy to see if I would qualify, and the specimen was sent for “AFFIRMA testing.” From what I have read, AFFIRMA testing has the highest accuracy rate for predicting thyroid cancer. Unfortunately, my test results gave me a high probability for Hurthle Cell Carcinoma, which is a type of thyroid cancer that can get into the circulatory and lymphatic systems and could cause the cancer to migrate due to the procedure. The surgeon told me that other types of thyroid cancer are sometimes able to have this RFA, however Hurthle cell is not a good one for it.
A few months later in 2022, I had a partial thyroidectomy and the findings were accurate… I had Hurthle cell Carcinoma….bummer!!
I had also been told about the risks with having to have a second surgery, however I do not think it is good to remove a necessary body part “just in case.” When I went into surgery, the surgeon knew my preference for a partial thyroidectomy, however he informed me that if he sees that the cancer has spread to the other lobe, he would have to remove the entire thyroid. I was lucky and only had a partial!

My half of a thyroid is working, but not well enough so I am on a very, very low dose of medicine. Getting regulated on medication has been VERY challenging (however that has been a familial issue with medications in general.) I am fortunate that I am only on thyroid medication (other than occasional tums/gaviscon)
I started out on “low doses” however had many side effects….(i.e., leg cramps, very bad hip pain, swollen hands, fatigue, weakness, insomnia, etc.). Although blood tests are used for monitoring, the blood tests are only one aspect of thyroid monitoring; how you feel is a BIG factor. When my dosage gets changed side effects improve or get worse immediately, so it is able to see the correlation.
Four years later, I have discovered that my previous doses of thyroid medication had always been way too high. Right now, the doctor feels I might be falling between two of the lowest doses. The doctor just changed my dosage to Tirosint 13 mcg 3x per week for two weeks and then 4x per week for one week. I am hopeful that this works…so far several side effects have already improved.
It’s a very tough decision when you are unsure if the surgery to remove your thyroid is actually necessary, so exploring the option to shrink the nodule with RFA seems like a great option. You can ask the surgeon if they send their biopsies for Affirma testing which appears to have the highest accuracy for predicting cancer so you have a better idea about what you are dealing with before surgery is considered. Good luck!

Hi! Thanks for responding. Yes they did the Affirma test which came back 90% for chance of Hurthie Cell Carcinoma. That's why they are recommending a Thyrodectomy. It is ultimately up to him. He is 55 but was an addict but now clean for 10 years. So that on top of everything else is tough for him when he has accomplished so much in recovery and now this. But I have had too many friends die of cancer and I would rather he deal with the side effects than go the other direction. We are seeing a second surgeon in a couple weeks and will be asking about the RFA then monitoring with scans and biopsies. He has already had 11 biopsies. Thanks for your input. It was very helpeful!