PTC with a +BRAF V600E mutation

myabunny
myabunny Member Posts: 3 Member
edited October 2023 in Thyroid Cancer #1

I'm currently 21 and will be 22 next month. Was diagnosed with PTC a little over a month ago after waiting nearly a year for a biopsy to be scheduled (issues with department shut down and people not wanting to do their job.) Ultrasounded in February and didn't get in for a biopsy until August. I came back positive for Papillary Carcinoma and was referred to an ENT for further treatment. My ENT surgeon has recommended a total thyroidectomy but wants to make sure that it's not in my lymphnodes. Last Monday I had a ultrasound of my neck and they noted that lymphnodes on both sides of my neck are enlarged and my ENT wants to get them biopsied to see if PTC has spread. That next Tuesday I had a abdominal and pelvis US due to pain I've been having and they told me yesterday that I have a kidney lesion. I also found more swollen lymphnodes under my arms on both sides. Does anyone have similar experiences? If so can you tell me more?

Comments

  • Miles' mom
    Miles' mom Member Posts: 45 Member
    #2

    Get the thyroidectomy. You will most likely have RAI treatment and they will do a PET and MRI which will tell if cancer has spread. Then you will have bloodwork and scans every 6 months for years. This cancer likes to pop around if you have the mutation--which is all too common.

    Once you are free and clear for awhile, your scans and bloodwork will be more spaced out. 1 year then 2 and so on.

    Please have great support and a good and trusted team of doctors. This is crucial!

    I will pray for you that nothing has spread. Then it is just a MAJOR inconvenience that you will get through. (not to diminish this at all. It sucks! It can be painful and emotionally and mentally tries to take you out). BUT..

    Cancer doesn't win.

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