Very confused , please help

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I was diagnosed with rectal cancer last Spring and had Papillon treatment at the Clatterbridge Cancer Hospital  in Liverpool with Prof  Sunny Myint followed by 5 weeks of chemoradiotherapy at my local hospital. 

We moved to another health authority a couple of months ago  and I have seen the consultant at the new area hospital  today. He seemed shocked that I had been given Papillon treatment so young and he has offered me the choice of having an operation to remove my rectum as he thinks the 3 monthly sigmoidoscopys and colonoscopys  are too wearing on mind and body.

He has had experience of people having the sort of treatment I had and their cancer returned  and it was not a good outcome.

I will admit I don't feel as well as I hoped to a year on from treatment  and every time I have a colonoscopy or sigmoidoscopy I feel worse and I have backache almost all the time and have developed diverticulitis .

I am very confused and in a whirl about it all. If anyone has any advice or thoughts I would be so grateful to hear them. 

  •   Gosh that’s a bit of a dilemma isn’t it? I always thought the idea of Papillon was to avoid surgery? I think you maybe need to seek advice from other professionals. Could you contact Professor Myint for his input and then maybe your original oncologist or ask for a second opinion from a different oncologist in your new health authority?

    The APR operation is quite a big one and you would have a permanent colostomy but only you can decide if that is preferable to your current situation. Its a difficult one to call - there are people on here who have had a complete response to treatment and are still cancer free several years down the line and then there are others (although not necessarily after Papillon) who’ve had a recurrence and then had to have surgery anyway?

    It’s a tough one but maybe a chat with the support desk would help?

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Karen 

    Thanks so much for your reply.  I've been reading your bio and you've been through so much, hope you are feeling better now.

    Yes the Papillon treatment was given so I could avoid an operation and until I started having the 3 monthly colon/sigmoidoscopys I felt I was doing quite well and recovering from the treatment and the chemoradiotherapy treatment.  It was after the first sigmoidoscopy when they removed 3 polyps and made me bleed and had to put a peg in that the pains started. 

    I ve gone from feeling I'm improving to feeling I'm deteriorating. If I felt better than I do I would say outright that I'll keep with things as they are but I just don't know how many more sigmoidoscopy/colonoscopys I can cope with 

    I can understand what this consultant is saying,  he say if the site of the cancer is gone than it can't come back in the place where it was.

    My previous consultant is quite unapproachable  and probably wouldn't discuss it.

    Prof Sunny would happily  discuss i know but he is so passionate about Papillon  I think his advice would be to stay with it.

     Thanks for your suggestions and I will have a good think about what you've said x

  • Hi  

    Have you connected with  ?

    He has given a very full account of the watch and wait process . 
    The big question with watch and wait

    I have been on these boards since 2009 as my mum is an amazing stage 4 survivor coming round to 15 years and I have seen the discussion  go around quite a bit . It is such a complex decision . 
    Sometimes getting a second opinion helps from someone completely objective . And other times it comes down to what you can cope with , surgery , recovery and potential stomas over constant scanning . Having watched my mum go through 60 scans I can say whilst the process never gets easy it did become a necessity and she got there . 
    Whilst you clearly are a brilliant responder it is a complex decision. Another man documented his journey too and it’s in the search box of you would find it helpful

    But perhaps another clinical opinion would allow you to talk through both options . We have found this particular helpful  in the past . You get to ask more specific questions like the normal times scales they would expect to see the recurrence. Stats around that . You could also ask if any current research was available. I do remember at one point in the past Nice asked Papillion to look at carrying out some research . That may well have happened . 
    You could also hear more about surgery and the recovery etc . 

    You also might like to chat with our helpline staff . 0808 808 0000.

    Take care ,

    Court 

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    Helpline Number 0808 808 0000

  • Hi Court

    Thanks so much for your reply. No I haven't seen Jogey's posts but I will read them.

    I have a month to think about what course I am going to take and do my research. 

    As I mentioned before,  if I felt better than I do now I probably wouldn’t even be considering surgery but I feel so tired and unwell,  much more than I did 6 months ago and I have linked it back to a very bad sigmoidoscopy. 

    Your mum went through so much with her treatments and I'm glad to hear she is doing so well x