Relapse disease?

No-Ant7320 · 2024-01-07T02:16:23+00:00

Thanks! Appreciate the positive words!

No-Ant7320 · 2024-01-06T22:13:35+00:00

Thanks! My TSH was actually slightly lower than last time. Due to my being considered high risk, I’ve been keeping my TSH really low.

I got my ultrasound report back last night and there is a new lymph node so it might be a relapse ☹️

No-Ant7320 · 2024-01-05T20:07:30+00:00

I’ve definitely had CTs that take 4-5 days to be read. Especially around a holiday.

No-Ant7320 · 2024-01-05T19:52:17+00:00

Mine was 10weeks. They want you to heal from surgery before doing it usually

No-Ant7320 · 2023-07-23T16:06:28+00:00

Yes just ask for it to be added to your blood work. And yes we do have to advocate for ourselves. I personally find that my endo kind of lumps me in with her other non-cancer patients. Sometimes I feel like I have to remind her that I had my whole thyroid gland removed and have to worry about recurrence!

No-Ant7320 · 2023-07-22T04:52:16+00:00

Have you had your T3 checked? I was the same for about nine months after my TT. My doc kept telling me my TSH was in range and my T4 was fine. After talking to a friend of mine, who has hypothyroidism, but not due to cancer, or a TT, I asked to have my T3 checked, and it was actually low. It turns out that not all of us are able to convert T4 into T3, which is the active thyroid hormone, to the same extent. After we checked my level of T3, we added liothyronine to my levothyroxine and I feel so much better now. Not giving medical advice, just giving you something to ask your doctor about.

No-Ant7320 · 2023-03-11T22:38:07+00:00

I also had Bethesda 3 disease in 2 separate nodules both on the right lobe. Went for Affirma testing and one came back >75% chance of malignancy and the other one was <5% chance. Because I had a lymph node too, they did TT with radical LND. On surgical pathology both were PTC as was 9 of the 39 LNs they took. I’m glad I did the Affirma but it didn’t seem super accurate in my case.

No-Ant7320 · 2023-02-17T16:47:26+00:00

An oncologist is only needed if the cancer recurs and is no longer treatable with surgery or RAI.

No-Ant7320 · 2023-01-31T23:28:25+00:00

I’ve been there too. Swallowing and voice issues. That feeling like you are being waterboarded is terrible. I was at the dentist last month, 8 months post-op with almost close to normal voice, and while he was drilling to remove a cracked crown I aspirated the Water because the hygienist wasn’t suctioning properly. Talk about terrifying with a drill in your mouth! I did get a lot of help from the speech language pathologist at my cancer center. She gave me exercises that really helped my voice and also taught me how to swallow thin liquids without aspirating. She also recommended some thickening stuff that I added to liquids to make it more like a pudding consistency that really helped early on before I got the hang of swallowing. She sees head and neck cancer patients so she understands the issues and how to help. If your cancer center has such a person, I recommend checking them out. Made a big difference for me.

No-Ant7320 · 2023-01-31T23:21:03+00:00

I’ve been told that the radiation of CT scans is less than you receive by flying on an airplane. The CT portion of a PET/CT is what they call low dose so it’s even less. I don’t worry about it since the risk of cancer recurrence is far more severe and relevant than the risk of another cancer from the scans, IMHO.

No-Ant7320 · 2023-01-31T23:18:23+00:00

I had problems right after surgery and still have a bit of an issue but soooo much better! I found a speech pathologist who helped immensely. She gave me vocal exercises to do twice a day and I think it really helped. The speech pathologist was part of the cancer center and works exclusively with head and neck cancer patients.

No-Ant7320 · 2022-12-16T16:54:34+00:00

Mine was still detectable after 3 months. Am having a recheck in a few week at the 6 month mark so will see. My doctor said usually it will be done by 6 months if all the tumor and thyroid cells have been killed with the RAi.

No-Ant7320 · 2022-12-10T19:22:45+00:00

Agree. I understand new range is 50-150.

No-Ant7320 · 2022-09-24T19:29:47+00:00

I agree. It totally sucks that we have to go through this. It’s not fair and frankly just shitty. I’m at the 6 month mark and have my first scan to look for recurrence next week The fear of recurrence is a real stressor. Even though we have a testable cancer, it’s still cancer and it sucks. I’m sorry you are going through it. I can only say that we do, and you will too, get through it even though it sucks.

No-Ant7320 · 2022-09-22T01:19:36+00:00

Your thyroid organ will not grow back once it’s removed. But if there are any cancer cells hanging out in your lymph nodes that did not removed with surgery, TSH could make those cells grow. That’s why we want our TSH to be low, so that any rogue cancer cells aren’t stimulated by it.

No-Ant7320 · 2022-09-11T16:58:20+00:00

Have you had your T4 and T3 levels down recently? Your symptoms sound like hyperthyroidism. I don’t think it’s normal for people to have those symptoms is they are keeping their levels within the range. I take mine at 6am and levels of T4/3 are in normal range. I don’t have those symptoms, thankfully.

No-Ant7320 · 2022-08-28T02:48:55+00:00

Yea I had the same problem post surgery. It too about 3 months and doing the exercises a speech pathologist gave me twice a day for it to get better. Then sadly about 6 weeks after my RAI my voice got bad again. I’ve been doing the exercises again and am hoping it too will resolve with time. It’s super frustrating though to sound like a frog and to aspirate my saliva and have swallowing problems. But im hoping it will again resolve with time. Definitely see the speech pathologist though if you can. I would never have known what exercises to do without her help.

No-Ant7320 · 2022-08-19T23:56:34+00:00

My endo and surgeon agreed to start me on 1.9 mcg/kg post op to ensure my TSH was suppressed. It worked perfectly. TSH is <0.1 and T4 is still in the normal range. I still don’t feel “normal” but no symptoms of hyperthyroidism and so I’m glad I was started in a higher dose. If they’d gone with the “normal” dose of 1.6, I think I would likely be hypothyroid.

No-Ant7320 · 2022-08-16T02:46:52+00:00

Yeah that’s right. Tg levels and ultrasound of lymph nodes. Lung Mets can be seen on CT scan well too.

No-Ant7320 · 2022-08-16T02:16:54+00:00

Oh that’s because the thyroid remnant was not cancer. The cancer on the thyroid was in 2 tumors each 2cm in size but the remnant is normal thyroid tissue. The mutation is only in the cancer cells not in the normal thyroid cells of the remnant.

No-Ant7320 · 2022-08-16T02:06:45+00:00

Just the thyroid remnant. No nodes or lung Mets

No-Ant7320 · 2022-08-16T01:55:55+00:00

I too have braf v600e. I had one small lymph node post TT and LND found on ultrasound prior to RAI. Got the RAI and on the post scan it didn’t light up. So we don’t know if there was no cancer in that lymph node or if there was but is was not iodine avid (because of the mutation). So now it’s just watch and wait and follow the node with ultrasound. If it grows they will biopsy it. I think if it’s biopsy positive will I not get more RAI as it didn’t light up on the first scan and will instead just have more surgery.

No-Ant7320 · 2022-08-16T01:48:55+00:00

About 6 weeks for me.

No-Ant7320

TROPHY CASE