4 year scan

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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 

  • Great news Deb and thank you for that extra information about these symptoms. Its quite common to suddenly get these flare ups for no reason as everything runs smoothly and you think you have got on top of it then all of a sudden you get the itch!

  • Wow, Deb!

    First, congrats on FOUR YEARS! Whoo hoo!

    And thank you for the heads-up that this is a Thing That Happens. It would send me into a tailspin of terror. Glad I now know it's not necessarily Doom.

    Hugs

    Suz

  • That's brilliant news Deb so happy for you.  Sounds like you had a long wait for your scan results like me - 6 weeks before i got my letter for 12 months scan (NED for me too phew!)

    Didn't realise it was the last scan at 4 years it does sound scary!

    Thanks for the heads up on the flare ups too - that's good to know.

    Get on with enjoying your life and no more scan anxiety! Take care

    Carole x

  • Well, I have learned something today; I have never heard of 'radiotherapy recall reaction' but I am pleased that everything was fine.  And congratulations on reaching the four-year mark!  That is wonderful news, now go and enjoy the rest of your life without the dreaded scanxiety and follow-on visits!  Thank you for letting us know, too.

    Irene xx

  • 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  Two hearts

  • Hi  ,

    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 

  • Hi - Please tell me what "scans" you are referring to? PET? MRI? CT? I would like to keep track on time frame, post chemoradiation, that "scans" are supposed to happen. Thank you.

  • Hello mll

    Not every hospital has the same protocol regarding scans after treatment, but I think a fair bit depends on the staging at diagnosis.  For the first 20 months, I had a CT and an MRI scan every three months (I had metastasis to the lung) and others only have CT scans.  I asked my oncologist why no further PET scans and she told me that generally they don't do these after treatment as there can be a fair bit inflammation which gives false readings.  Have you finished treatment?  You will probably have some sort of scan three months after treatment ends but don't be alarmed if there are remnants of the tumour, the radiotherapy keeps working for some considerable time afterwards.

    Irene xx