Morning all.
My husband finished his round of treatment in December 2024. He’d had the 6 sessions of R-chop, 3 treatments of intrathecal methotrexate and then 2 hospital stays for high dose methotrexate.
He has gradually been recovering some strength but has his good and bad days.
At the beginning of his treatment his consultant said he’d want him to have radiotherapy as a preventative measure, I think I have that right?
The referral letter was sent at the beginning of January ( radiotherapy will be at a different hospital). I know the waiting times are probably different depending on where you live, but I was wondering what would be an average waiting time? I contacted his CNS about a week ago and she said they’d recently referred 3 people and no one had heard anything yet.
The plus side of this is that my husband is in a slightly better place physically to deal with the radiotherapy. The negative side is that he really wants this last part over and feels he can’t “get on with things” until it is.
Should I be chasing this more?
Thank you
Based on what your husbands CNS has said they don’t know the time frames…….but actually they are the people who should be pushing this especially if it is in any way time critical……. so keep at his CNS…….. the one thing I do know is that Radiotherapy units are very very busy places…..
Based on my conversations with my 4 Consultant Radiologists……. treatment is programmed on a ‘need to be done’ criteria…… so most urgent first etc.
Over my years (Sep 2013 to Oct 2015) I have had 3 sets of Radiotherapy resulting in 45 zaps (5, 10 and 30)…..
The time between referral and treatment was…..
(For context we stay in Inverness…..)
1) For my 5 zaps (Sep 2013) these were done in Inverness.
From my referral from my Dermatologist (I have a rare skin NHL) to my first appointment with my Consultant Oncologist it took 4 weeks.
First appointment with my Consultant Oncologist to radiotherapy planning and mask cast taken…… took a further 3 weeks then a further 5 days to start the treatment.
2) For my 10 zaps (May/June 2014) these were done in Glasgow
From the point that my Stem Cell Transplant Consultant in Glasgow told me I needed radiotherapy it took 25 days to be seen by my Consultant Radiologist.
It took a further 12 days for my Radiotherapy planning to be done…….. then a further 6 days before treatment started.
3) For my 30 zaps (August/Sep/Oct 2015)
From my first appointment with the Consultant Radiologist (In Newcastle) to seeing my second Consultant Radiologist (In Glasgow) it took just over 9 weeks.
Then 9 days to get to the point where the planning and mask cast was done ……. then treatment started the following day.
I hope you can get answers soon ((hugs))
You may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
As long as you are in the UK and to help widen your support base you could look at their various Support Platforms…
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey available for patients and caregivers/family.
They also have a great Buddy Service where people can be linked up with someone who has walked the same journey again available for patients and caregivers/family.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
You may well bump into me there as well 
