Hi I was diagnosed a few weeks ago and PET scan shows 3 small areas in the groin , one on left, 2 on right. I was told the result by a Macmillan nurse on the phone and also that the treatment will be radiotherapy only, no chemo. My 1st reaction was 'great' as wait and see sounds v anxious, and chemo has more side effects. But everyone with stage 2 seems to get chemo and I am now wondering why not me! Will the radiotherapy be enough?? I saw the consultant radiologist and signed up for the treatment plan but I was a bit shell-shocked and didnt really ask much.
Can anyone fill me in about this treatment option at all?
The consultant haemo-oncologist that I saw at the start said that there is no cure, but the radiology consultant seemed to say that there is, possibly. On the consent form I signed it says purpose of teatment...cure...as opposed to several other options.so that sounds hopeful. So I am a bit confused!
Anyway it's great to be able to ask so thanks for being there (if you are!)
Cheers all!
Hi and welcome to this corner of the community, I am Mike Thehighlander and I help out around our Lymphoma groups.
Sorry to hear about your FL diagnosis, it can be a whirlwind in the early days and trying to understand somethings that is hard to understand can be challenging.
I was diagnosed way back in 1999 with a different type of low grade NHL and like FL it is widely accepted that it’s incurable but some treatments can put it into remission for a long periods.
The use of Radiotherapy first is not that unusual as why use a sledgehammer (chemo) to crack a nut…… radiotherapy tends not to be a sledgehammer.
Over my 22 years I have had a multitude of treatments having had over 750hrs of different types of chemo, 45 radiotherapy sessions and two Stem Cell Transplants.
Back in 1999 I was told I would never be in any long term remission from my very rare skin NHL but back in Sep 2016 I was told remission for the first time in 17 years (hit my name for my story).
Always around to chat.
I sure am Scottish living in Inverness.
You will see from my profile that I went through all the stages over my first 14 years with my rare CTCL eventually reaching stage 4a and the first treatment I had was radiotherapy on a tumour the size of a tennis ball.
It’s all about using the best treatment for how your condition was presenting and for my first treatment chemo would have made no real difference.
