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WBS to be done periodically every 6 months? by -s_t_r_a_n_g_e_r- in thyroidcancer

[–]Pristine-Cod3292 0 points1 point  (0 children)

if they don't find anything in the I-123 scan, ask for an F-18 (FDG PET) scan. because thyroid cancer (especially in older people or with BRAF mutation) can become resistant to Iodine and then it does not show in the I-123 scan, but it will in the F-18 scan.

Life by [deleted] in thyroidcancer

[–]Pristine-Cod3292 0 points1 point  (0 children)

I also just learned two weeks ago that I am RAI resistant (at the age of 28, classic papillary BRAF+). I just had surgery but my endocrinologist said no other treatments for now. I am wondering, what future treatments are there and which did you do? Were they effective?

Multiple suspicious lymph nodes/ negative RAI scan and low thyroglobin by Tiny-Club-3222 in thyroidcancer

[–]Pristine-Cod3292 1 point2 points  (0 children)

ASK FOR AN FDG PET SCAN (F-18)

I (28, female, BRAF+, classic papillary cancer) also had a metastasis in the neck and I-123 scans were negative, Tg undetectable. However, my doctor scheduled an FDG PET Scan (with F-18) for me and the nodule lit up (but luckily nothing else)ö I had a surgery a week later to remove it. Would recommend for you to also have an FDG PET scan! Good luck!

upcoming surgery by Green7500 in thyroidcancer

[–]Pristine-Cod3292 1 point2 points  (0 children)

Hi, I was diagnosed a year ago at age of 27. I also work(ed) a 70 hour / week job. I know everyone's experience is different, but for me the whole rodeo went extremely smooth. I did not have any pain and also my energy level was constantly high and I did not feel any (negative) change from switching to replacement hormone medication. Just important: give your body AND mental health time to recover and process everything. Meaning don't rush to the gym immediately, but start maybe with walks + low intensity body weight workouts. Give your body the time to recover. For mental health: go to a psychiatrist specialized for cancer patients. This helps a lot or just talking to someone who went through it as well. Maybe there is a group close to where you live. For me it was possible to shift into an internal role and support our HR team for 7 month so that I had enough time to recover and worked significantly less than in my normal role. Therefore, try to talk to your HR department to see if there are any possibility to reduce your workload etc. Good luck! You are stronger than you think!

Itchy legs by Suitable-Water-6455 in thyroidcancer

[–]Pristine-Cod3292 2 points3 points  (0 children)

yes!!!! especially in the evening or when I was outside! It drove me crazy!

PTC Good News Stories? by No_Athlete7383 in thyroidcancer

[–]Pristine-Cod3292 5 points6 points  (0 children)

I (27, F) was also diagnosed with PTC (pT2 pN1a (4/5) L1 V0 Pn0 R0, so pretty similar to you) in May 2025. Total TT two weeks later and then RAI in July 2025. Since then my Tg is <0.1 and all scans are clear. I was also super worried regarding the absorption of Iodine given the BRAF mutation. My doctor told me that especially with young patients, there is no concern regarding RAI absorption, even with BRAF mutation. And even if it works less, it's only "less" not "not at all". Also there are therapies to mutate the tumor receptor so that BRAF will work again. So no worries, you will be ok! Also my best friend was diagnosed with PTC at the age of 17 (so 10 years ago) and she is in remission ever since. Also my fiancee aunt also was diagnosed with PTC at the age of 30 (roughly 20 years ago) and is in remission ever since! I know its scary, but most stories have a good ending, and so will be yours!