So so happy that I have finally (after a very long and anxiety filled wait) received the results from my 4 year scan - and all good!!
Can't tell you how relieved I feel. Apparently this is the last scan now, with just a consultant check up in a year's time (fab, but a tad scary!).
One thing that I did want to share though - is that in July I had quite a scary experience - pain in my bottom, down my leg, terribly itchy bottom, raw sore skin - everything that sent me into a total tailspin. I've had lots of flare ups over the last four years, but this was by far the worst - and I was pretty scared. I made an appointment with the Consultant and got checked over. Interestingly (and I'd never heard of this before) she called it 'radiotherapy recall reaction' - she said it happens sometimes in a small number of patients and they don't really know why - but the body, for some reason mimics all the symptoms of having radiotherapy, just for short bursts of time (flare ups).
Thankfully it was all ok - and obviously everything always needs checking, but an interesting one to note for when these flare ups occur!
Anyway, so yeah 4 years - thanks to everyone for your continued support over all this time, not sure what I'd have done without you on here.
Deb x
Firstly what fabulous results from your scans, congratulations!! My last year of surveillance was the same as yours, I presumed that I’d be given a last set of scans prior to discharge but was told at my previous appointment approximately 12-18 months earlier that there’d be no more.
Secondly thanks for explaining about the ‘radiotherapy recall reaction’ this is something I hadn’t heard of before but sounds completely feasible & would explain why some of us suffer these flare ups sometimes years after treatment, I find stuff like this really interesting, it shows how complexed our bodies are doesn’t it?
Nicola
Wonderful news! Such a relief. They do say the milestones are the 2 and then 5 year post treatment. So it’s wonderful and encouraging to know you’re doing so well.
I’m 2 years (and a few months now). And this is my first 6 month break between scans which seemed daunting but is also a nice relief from the constant back and forth!
Totally understand about the “flare ups”. Happens a lot to me. Scares me every time. Usually I have an immediate panic and then remember to talk myself down from it. I get the itch and pain - particularly from one of my lymph nodes that turned into quite a large tumour too. But I have to thank that lymph node because instead of passing it on to the next lymph node which is what usually happens it just kept it all there and probably saved my life! I was Stage IIIc so last salon before Stage IV. I still get mucus and blood too which always throws me too and the fatigue!
I’ve been seeing a gastro oncologist at the Marsden as they thought I might have colitis. But it’s turned out to be radiation related enteritis - basically it nuked the tumours but also all of my gastrointestinal tract too.
But these setbacks are all part of the risk. Hopefully very few of us will have any long term side effects especially those caught earlier in their diagnosis. We are still assessing what level my side effects will be. I was always very badly constipated for most of my life but in the last 6 months my bowel seems to have just simply stopped processing things I’m down to one meal a day as just can’t process anymore than that and even then things just don’t work so perhaps we will have to consider a stoma/colostomy, not sure of the long term name for it, if we can’t kick start things again
We’ve all been through a lot and thank goodness we have her to help us too! Sharing information is just so helpful to know we’re not alone.
Best wishes to everyone!
PPR x 
Hi Prettypinkroses ,
It’s great to hear from you & have an update on how you’re doing although I’m sorry you’re having these ongoing gastro issues! Like so many treatments/medications for chronic disease it’s often a double edged sword isn’t it? Again recently on a previous post we’ve discussed permanent colostomy’s to regain quality of life & I know you’re not there yet & it’s not an easy decision to make but that against loss of quality of life would kind of be a no brainier for me. I’ve still so much I want to do in my life. Hopefully it’ll not come to you having to make that decision though & your medical team can find a less invasive answer. Although I didn’t suffer side effects to the same extent I found the few issues I was left with improved greatly around the 3-4 year mark post treatment, my anal stenosis, which was quite severe & at the point where my colorectal surgeon began discussing the stretching under anaesthetic procedure, improved, I even found I wasn’t reliant on the stool softeners any longer which was great as they weren’t great for my digestion. It really is a minefield navigating through recovery isn’t it? Hold on in there & hopefully you’ll find a solution really soon.
Nicola
