Small papillary thyroid cancer

Hi. Im Astrid. I'm Indonesian living in Indonesia. This is the story of my battle against Thyroid Cancer in my throat.

- May 26, 2026: A lump suddenly appeared on my neck after I sneezed and had a cold.

- May 29, 2026: I went to a General Doctor at a nearby clinic to have the lump examined. Although the Doctor had already advised me to go to the hospital for a checkup, I still asked him to prescribe cold medicine, hoping the lump was due to the flu.

- June 4, 2026: Because the lump hadn't healed, I returned to the nearby clinic and requested a referral letter to have my health checked at the hospital. After receiving the referral letter, I immediately went to the nearest hospital to have the lump examined by an ENT (ear, nose, and throat) Doctor. Because the lump was attached to my Thyroid, the ENT Doctor asked if I often felt anxious, restless, and worried. The ENT Doctor said that anxiety, restlessness, and worry were closely related to my Thyroid. The ENT Doctor then ordered an ultrasound of my throat.

During the ultrasound, the Doctor who performed the ultrasound found several cysts and nodules on my Thyroid. The ultrasound predicted that my lump was grade 4B, meaning malignant. The Doctor who performed the ultrasound told me not to worry because the sickness was already in my body. He stated that what I needed to do was find a solution to battle against this sickness. Thank you.

- June 11, 2026: The ENT Doctor decided to have further tests by an Oncologist.

- June 13, 2026: During the meeting with the Oncologist, the Oncologist said that he would conduct surgery on my throat and remove my left Thyroid and the lump. However, I asked the Oncologist to only remove the lump. The Oncologist agreed, but he said that I would have to be willing to undergo a second surgery if the laboratory confirmed that the lump was malignant. I agreed and accepted.

- June 15, 2026: The hospital decided that the surgery to remove my lump would be performed on June 20, 2026. I had to see a Cardiologist and an Internist before the surgery.

Note: According to my family, the lump in my throat is a family/genetic condition. Everyone in my family has had lumps, and one person has had cancer.
I am grateful that I am not married and will not have children because I am already in menopause. If I had children, I would have produced a sick child.

The breast tumor I had in 2000 turned out to be a family condition.

- June 17, 2026: The Internist said that my entire body, including my kidneys and thyroid hormones, is healthy. The Cardiologist also said that my heart is healthy. Therefore, the surgery on the Thyroid in my throat can be performed.

- June 18, 2026: The Anesthesiologist said that he would administer general anesthesia before the surgery. Since I have had several surgeries, he hoped the anesthesia would work well and the surgery would be successful. Thank you.

- June 20, 2026: The surgery for the lump in my throat was performed in the afternoon. Before the surgery, I joked with the Anesthesiologist. When the anesthetic rose from my wrist to the middle of my arm, I immediately floated into the sky. 😆

Note: I woke up from my sleep in the sky about 3 or 4 hours after the surgery was completed. When I woke up, I immediately ran to the bathroom to pee, even though my family had told me not to walk after the surgery because I might float and fall. It turned out not to be! I was still able to walk normally to the bathroom while carrying my IV pole. 💪

Before the surgery, I felt the lump shrink, but it turned out to have sunk into my throat. 😭
I'm still grateful. The surgery went quickly and smoothly.

- June 22, 2026: The Oncologist who examined me said I could go home today. 👍
I was then able to go home after having the bandage on my neck changed, taking my medication, and taking care of the paperwork.

- July 7, 2026: The Oncologist said the lab results confirmed that the lump on my thyroid was Papillary Thyroid Carcinoma, also known as Stage 2 Thyroid Cancer.

- July 14, 2026: The Oncologist said that because I had Stage 2 Thyroid Cancer, my entire Thyroid would be removed from my throat through a second surgery. The entire surgery would be performed in August. The Oncologist also said that after the second surgery and after my Thyroid was removed, I would be dependent on a medication called Levothyroxine. The Oncologist also said that after the second surgery, there would be emotional changes. I could suddenly become angry or sad.

- August 1, 2026: The Oncologist announced that he would perform a Total Thyroidectomy. This meant removing my entire Thyroid gland. 😭

- August 3, 2026: The Surgical Officer scheduled a blood test, a heart exam, and meetings with the Cardiologist, Internist, and Anesthesiologist. The surgery schedule was also set.

Note: I felt sad because my Thyroid gland would be removed. It's small, but it's the one that regulates hormones, heart function, stomach function, and so on. The Thyroid gland's function is very important, so I would be dependent on Levothyroxine if my Thyroid gland was removed.

- August 4, 2026: The Internist was a little concerned about the condition she found in my blood. She asked me to have a second blood test. Fortunately, everything was fine, and she cleared me for surgery. The Cardiologist, who loves to sing, said that my heart was fine, so I was cleared for surgery.

- August 7, 2026: The Anesthesiologist I met today provided a lot of reassuring information, and I could tell he was trying to calm me down with his friendly conversational style. Thank you.

- August 8, 2026: The surgery to remove my Thyroid from my throat was performed. The 7-hour anesthesia and surgery were performed smoothly and safely.

Note: The size of the Thyroid removed from my throat was the size of my palm. It was huge!
The Oncologist said that because I had cancer, my entire Thyroid, including the surrounding area, was removed from my throat.

My family told me that when I first woke up from my long sleep after the anesthesia, I immediately sat up. The nurse then got angry because I wasn't allowed to get up right after the surgery, and she was afraid I'd fall.
This is my best post-surgery humor. It turns out that even after cancer, I'm still Supergirl! 😀

I still have a long way to go. I remain patient and determined to battle against Thyroid Cancer in my body.

@colleenyoung Yes consulation after the second set of biopsies (11 biopsies all together). Cancer has not been confirmed, only suspected. We have discussed with the surgeon who for some reason recommended his "buddy" and simply said Jim would be in good hands. Meeting with that second surgeon in a couple weeks. And yes, fears stated openly but doc seemed to be deadset that thyroidectomy is the best option and pretty much refused to discuss other options. I will make sure that other options are discussed fully next visit (patient's bill of rights may be brought up). The goiter in my son's neck is often painful, gets large then shrinks with use of ibuprofen.

That is great information. Thank you!!

@shamb52
I did a quick AI search….not always accurate but a nice starting point. Here is the AI search response….

Yes, Medicaid may cover radiofrequency ablation (RFA) for a thyroid nodule if it is proven to be medically necessary.Coverage DetailsState Rules: Medicaid rules change depending on your state, because each state runs its own program.Medical Necessity: The nodule must be benign (non-cancerous), confirmed by a biopsy, and causing physical problems.Approved Reasons: Coverage usually applies if the nodule causes trouble breathing, trouble swallowing, voice changes, or pain.Exclusions: RFA is generally not covered if it is done only for cosmetic reasons on small, painless nodules.Prior Authorization: Most Medicaid plans require your doctor to submit proof of medical necessity before they will pay for the treatment.If you tell AI your state when you do the search. 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!

@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!

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.

@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.

@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.

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?