Hello,
this is my first time posting on here even though I’ve been a cancer patient for nearly 2 years! I was originally diagnosed with classical HL in 2023 and had chemo, but my lymphoma returned less than 6 months later and so needed further chemo, an antibody therapy and an autologous stem cell transplant. I got out of hospital in march hoping that would be the last treatment I needed but in June I found two lumps in my neck wit’s my PET scan showing three small areas light up…. My team decided to try radiotherapy and I’ve just finished 18 sessions last week.
I’m feeling worried because I can still feel the lumps in my neck, I’m wondering if anyone else has had radiotherapy and it’s taken a long time to notice any changes to lumps? ( I have to wait two months to get a scan!!) Thank you!
Hi Sofia123c9c3d6 and a warm welcome to this corner of the Community. I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL….
Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Especially as I have had 2 Allograft (donor) SCTs and as part of my main 2 years treatment also 45 zaps of radiotherapy (5, 10 then 30)
The effects and effectiveness of radiotherapy can last for months…… You can see in my story that my first 5 high intensity zaps were on a tennis ball sized surface tumour above my right eye……
So the effects of the radiotherapy was very visible and it honestly took a good 8-9 weeks for the tumour to completely disappear…… but I am left with a 10p sized indentation in my skull but no other lasting effects…..
But I do know people who have had radiotherapy to their neck and have been left with some scar tissue that can be incorrectly seen as Lymphoma activity.
My second set of radiotherapy was part of my conditioning for my first Allo SCT and this was to all my Lymph nodes in my body as well as my bone marrow…… all designed to kill off my immune system….. yes my first Allo SCT (June 2014) failed after 6 months (Christmas Eve 2014) and I went back for my second Allo SCT in Oct 2015….. 16 months after those 10 zaps on my lymphatic system and my Consultant Radiologist said that the effects of that treatment 16 months back was still working on my immune system.
This has been a long way round to saying a week post your last zap is far to early to see the positive effects of your treatment.
