Hi all.
So I've had my results yesterday and I am so disappointed.
First of all, maybe it's the way my oncologist is but she was very timid with it all.
I had to actually ask her if she would deem the treatment as success, to which she said yes.
But...
Whatever was there in thyroid bed is gone.
Long infected lymph node didn't change in size, and it will never change. Once it grew it will stay same size, doesn't matter if cancer gone or not. The only way to find that out is to have MRI again in 3 months. If it still the same size than great news.
One enlarged lymph node on the other side, but she said it might be reactive, and I do have infection for more than a week now. So again scan in 3 months will tell.
She told me to start treating thyroid cancer like a chronic illness. Like asthma. It's there but I can still live long life with it and have it under control.
That is soo disappointing for me.
The treatment was so harsh on me, my idea of it being worth it was to be cured.
That was the aim.
Again more wait and more scans.
In the end she said if the scan in 3 months looks the same I will be moved to 6 months.
Then if all OK to yearly one.
Sorry it might feel like a negative post, as it is.
I just expected something else from that appointment.
Thank you.
Izzy.
Hi Izzy
Not the news you wanted but I gather that PTC is indeed a chronic disease. It still doesn't make it any easier to bear. Stats can be useful sometimes and the 20 year survival is 90% according to the NHS. I suspect your oncologist was as disappointed as you which is why you had to prise the info from her....to me that is really silly of her. At least it's out in the open and you know what you have to deal with. Deep breath...there's a lot of life to lead between scans. What else can you do? Fingers crossed for your next and all the yearly ones to come. Hugs
Hi Izzy. I had a quick look around the thyroid forum (I see you've run into silence there). Then I had a look at the two main Thyroid Cancer charities and nothing there. As far as I can find PTC with a Braf mutation doesn't respond well to RAI which of course is little help to you. There is a PTC group on the well known social media platform and there are discussions about dissections and external beam RT.
I wish I could be of more help
