Treatment Choice in polyposis syndrome with a rectal cancer

FormerMember
FormerMember
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I would appreciate any thoughts on what people would do in my situation. I am 34 years old so have a long time to go (I hope). I have been diagnosed with a rectal polyp cancer ?T2N0M0 at this stage. I also had 27 other polyps some of which were sessile and some tubular adenomas but no others with any signs of cancer.

I have been advised of 2 options of surgery: 

1) A Proctocolectomy with J pouch formation and temporary ileostomy. I feel like this option may be fine but if there are complications it isn't great and I have no options other than a long term bag. The benefit is I will only have a tiny bit of rectum left so longer term chance of more cancer much lower. 

2) A low anterior resection with temporary ileostomy and on going surveillance in the rest of my bowel long term. They initially didn't offer me this until I questioned it but now say it is really a 50: 50 call but essentially there is no evidence on the sort of polyposis syndrome they they are wondering I have (it isn't FAP or Lynch syndrome but may be serrated polyposis but they are not sure) as to how effective surveillance is at preventing another cancer and then more surgery. However, I like that this gives me back up options of what to do if there is more cancer at a later date (but they say the back up option which would be then doing option 1 would likely be less successful functionally and also always the risk disease is missed and not caught early). 

I would really appreciate your thoughts as to what others would do or have done in a similar situation as I am feeling so stuck at the moment. 

Thank you 

  • Hi ,

    Welcome to the forum . I am here because of my mum but a couple of thoughts did cross my mind . You have time on your side and a big decision so I would probably ask for a second opinion just to see what other specialists in the field are thinking . I would probably also do some research to see if there is a wider view . I use Pubmed search engine for medical research .

    There is a section on Bowel Cancer UK where you can leave a question for a specialist nurse or ask on their forum to widen your net . Given its quite specific you might benefit from other forums . 

    I also read recently about a clinical trial for ileostomies where they use a kind of cap . It looked really good . I will try and see if I can find the information as you might like more information on it .

    take care ,

    Court 

    Helpline Number 0808 808 0000

  • Hi again . It’s called the “ ties” system. 

    Court 

    Helpline Number 0808 808 0000

  • FormerMember
    FormerMember

    Hi amat059. What option did you pick in the end? I have the exact same diagnosis and also in my 30s. I had the 1st one done a couple of weeks ago, as doctors heavily recommended total proctocolectomy.