Rectal Cancer

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Hello everyone, 

I was recently (May) diagnosed with rectal cancer. I was told after a colonoscopy and then had to wait 5 weeks to find out the treatment that my doctors have planned for me. I did have a CT, MRI and a surgical pre-assessment in that time though. I’ve also been signed off work. 
After the MDT meeting I met and spoke to my surgeon who told me what the plan was - 5 days of radiotherapy, followed by 4 cycles of chemotherapy and then after 3-4 months he will operate. Due to the position of the tumour which is quite low down I am likely to have a stoma after the operation, which I’m ok with.  

I’ve since spoke to my oncologist (lovely man) who gave me a more precise idea of my oncology treatment plan. He said I should be able to continue driving to my radiation appointments since the side effects will be worst after treatment finishes. But I will be supplied with creams, vaginal dilators and painkillers. The chemotherapy side of things will be Oxilaplatin (IV) and Capecitabine tablets twice a day for a fortnight then I get a weeks break. I should also be able to get the IV chemo in my local hospital. 

He told me the tumour was 3cm in length and that it was stage 3 as it had gone into some of the surrounding lymph nodes but wasn’t present in any other organs. But he stressed to me that I shouldn’t focus on that as it didn’t mean anything but I should focus on my treatment, looking after myself and that’s what I am doing. 

I still haven’t actually started treatment, I have a PET scan tomorrow and then I get my radiotherapy tattoo next week. But I am hopeful that I will start treatment in the next 3 weeks. I’m in Scotland and being treated at Dundee’s Ninewells hospital. 

  • Hi  

    Welcome to the forum . I am in Scotland too  but not so far north .

    I just want to wish you all the very best with your treatment . The only time I have ever seen my mum rest and look after herself was during treatment where she would frequently tell us she was listening to her body !

    You have been given wise words from your oncologist.

    Hope everything goes smoothly with your treatment.

    Court 

    Helpline Number 0808 808 0000

  • Hi, hope you're coping well mentally. It can be a real struggle. I've been on similar treatments, having 5 sessions of radiotherapy this week. It's been no bother, just a case of lyingLying face still for ten minutes. I haven't felt anything and they said I'm not likely to for a week or so. So nothing to worry about with your radiotherapy. 

    The iv chemo gave me tingly hands and sensitivity to cold drinks, which got better further into the two week cycles. The chemo tablets were worse for me, or the 3 days of steroids, I'm not sure. Mainly felt tired and had mix of constipation and the other untill things settled down after a few days. 

    My primary tumor is also far down and I'm also looking at a stoma at some point, but, unfortunately mine had already spread to my liver even though we got it early.

    So you're not alone and there are plenty of us that are going through the same things. 

    Wish you the best

    Take care, and keep talking! 

  • Many thanks Court, much appreciated. 

  • Thank you Neilio57 - think one of my problems is I talk too much. Wink

  • Hi there , hope you're doing ok, your story mirror's mine but you are slightly more into your journey than me , I go this weds for treatment plan which they said would be chemo then surgery later but I will know more on weds, the only bit I haven't looked up on is stoma I have no idea what that involves and I darent look to be honest , it would be nice to hear how your treatment goes , obvs noones is the same , take care x

  • Hi Beaumont44 I am also on a similar journey I hope you now have your treatment plan and are not waiting to long for your chemo, I see my onocologist for the first time on Friday I’m hoping to get a treatment plan and more information on my diagnosis as many things are unsure. As you are a bit further than me on your journey any updates on your treatment would be greatly appreciated x

  • Hi there , I start my chemo on 20th of Sept, it's so much to take in ! I'm scared but also want to get on with it now , I have chemo through drip on 20th then 2 wks of chemo tablets then wk of rest and I do that 4 times over 12 wks , im looking at middle of Dec then so I'm thinking scans then surgery just after Christmas, how are you feeling on yourself? I think it's so weird to have cancer but feel fine ! Obvs that is about to change , hope you get on ok when you see the oncologist , its the waiting that's the worst , the unknown , its nice to chat to people going through the same tho , please let me know how you go on il be thinking about you x

  • Hi, thank you for your reply, I hope all goes well with your chemo it would be nice if we could update each other on our journey. I  have read so much about rectal cancer  but really don’t know what to expect as a diagnosis every time I ask they are unsure even though I have had a PET, MRI and CT scans plus another CT next week.

    thanking of you on your journey x 

  • I'm not sure what a PET scan is , mine was found through a colonoscopy which is camera up bum basically things looked ok but as camera came out they saw the cancer, although I didn't listen and told myself maybe / hopefully it wasn't! Only after biopsies that it was confirmed , I've got lots of info about the chemo but I so scared to read into the stoma business , im thinking take it a day at a time and deal with it slowly, is it rectal cancer that you have ? Or still waiting for results back , def keep intouch yeah , like people say everyone's journey is different, can't even believe I'm putting that ! Just never think it will happen to you but hey ho it has ! Keep intouch xx

  • Your journey sounded pretty like mine. I was stage 3 back in June 2022. I had radiotherapy and chemo tablets. This reduced the tumour to a scar like appearance. A complete response I was told. I then had ELAPE surgery in December 22 with a permanent colostomy.  I then had adjacent chemo. I was supposed to have tablets and iv but had a wound which wouldn’t heal so just had the tablets.  Yes it seems like a long journey but I’m doing well.  My stoma nurse told me about irrigation.  I definitely recommend this with the stoma.  I just wear a cap over it.  It’s been a game changer for me.  I wish you well on your journey.  I was given a cream called Flamgel for the radiotherapy and I had no burns or discomfort at all. X