Very Low Rectal Cancer

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Hello,

Just wanted to make contact.  Have been lurking here for some time having previously been on the anal cancer forum.  My polyp was so close to the anal verge that my surgeon wasn't sure whether I had anal or rectal cancer.  He has now confirmed that I have rectal cancer so I have transferred here.

I am 70 now and first had blood spotting in September 2019.  When it continued and increased I eventually went to see my GP on 9th March 2020.  She, without examining me, said that I had piles.  I put it on a back burner being somewhat diverted by the pandemic and also by the fact that I was diagnosed in September 2020 (after a regular mammogram) with early breast cancer.  I had a lumpectomy (with sentinal nodes removed) at the end of October 2020, followed eventually (put off twice) by a second operation to get clear margins in January 2021.  Then radiotherapy at the beginning of March 2021.

Having finished that, I thought I would go back to the GP to check out my bleeding that was continuing.  My GP (a different one from the first) physically examined me and immediately put me on a two week urgent pathway.  She said it felt more like a polyp than piles and that the base felt hard. 

Following a colonoscopy where they couldn't see the polyp because it was so far down but could physically feel it, I saw the colorectal surgeon, who was finally able to see it with a proctoscope.  He decided to do a biopsy under general anaesthetic and an urgent MRI scan.  By this time, even though no-one had said, I knew it was cancerous.  After the biopsy also had a CT scan. 

About a week later my surgeon said that I had a low rectal adenosarcoma.  It was 1.1cm Stage1, T1/T2 N0 M0.  Unfortunately, because the biopsy came out in three pieces, the pathologist was unable to say whether a clear margin had been obtained around the tumour. Because of where it was, they would be removing my anus, rectum and part of the sigmoid colon and giving me a permanent stoma!.  The reason was that it was so close to the sphincter that removing the section containing the polyp would not leave sufficient of the rectum next to the sphincter to join up. This was pretty shattering news!  He assured me that this would be curative but nevertheless I was daunted by the cure. 

The following day he phoned me and said he had been thinking about me and decided that this was a huge operation for a small polyp. He was going to propose to do a second biopsy to try and get a clear margin.  This was done on 16th June and am now waiting for the results to come back.  The surgeon says that if they achieve clear margins, I will be put on to a watch and wait regime with frequent checkups, MRI and CT scans and an annual colonoscopy.  If they don't, I will have to have the big operation.

I asked whether, if they don't get clear margins, it would be possible to mop up any stray cancer cells with chemotherapy and radiotherapy.  He said he had consulted the oncologist who said that this type of cancer almost always recurs and therefore chemo and radio wouldn't be effective.  However, I would be welcome to talk to the oncologist once they get the results. So now I am waiting, waiting.

I have read somewhere else on this site of the Papillon treatment and was wondering whether it would be a possibility for me.  I would be very grateful for any information anyone could give me.

Am feeling pretty desolate at the moment.

Jane

  • Just wanted to say hi, I am new here and have no idea but thought if I reply it might get someones attention , I wish you all the luck in the world xx

  • Hi 

    Welcome to the bowel forum and thank you 

    A lot of variables for you to navigate . I am going to see if  is around to share his experience of Papillion treatment . I am not actually sure what the current protocol for it is and am trying to find out . I know kevh had some radiotherapy then additional Papillion treatment .  
    But he may be able to provide more information. 

    I will also have a look at the Nice guidelines for the NHS again .

    Take care ,

    Court 

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  • https://www.nice.org.uk/guidance/ipg659/chapter/3-Committee-considerations
    This is the nice guidelines for Papillion treatment . 

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  • https://www.nice.org.uk/guidance/ng151/chapter/Recommendations#management-of-local-disease
    I think this is the guidance for the NHS for rectal cancer care !

    A bit complex to read but might give you some useful information on the treatment options recommended.

    take care ,

    Court 

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  • Hi Court,

    Thank you for coming back to me so quickly.  I followed the link you gave me and am not sure if I followed what it was saying.  It seemed to me that they say it can only be done as part of a research study?

    Obviously, I would rather not have the APR and so am clutching at any other straws there may be around.  Of course, I may be lucky and have clear margins.

    Just feeling really down at the moment and rather unwell.

    I really appreciate you helping me.

    Jane

  • Hi  don’t despair, your story sounds similar to mine, especially the misdiagnosis. Mine was Stage 2 and I didn’t get a choice. Surgery was 2018…and new normal is doable and my surgeon did a brilliant job. All my tests keep coming back clear and I’m cancer free!  So many thoughts and what ifs going through your head. Stay positive. 

    Ewok
  • Hi 

    I noticed that too and had asked about it with another poster ! It previously did not say that on the Nice guidelines . At one point in time Nice had asked Papaillion practitioners to do further peer review research , to evidence the benefits of Papillion therapy as over the last decade there was not a lot published at that level . Medicine likes to go with evidenced based practice so I can think until that is achieved it is only being endorsed as research . That gives me a dilemma as it was great to refer elderly people to it who could not tolerate surgery and that was one of its primary functions . It think it’s suitable obscure to not quite understand if it’s available or not !!!

    Your oncologists or surgeon might know more ! Previously Macmillan advised me to link in the Nice guidelines where appropriate as Surgeons still class surgery as the gold standard to ensure people were fully informed .  A point of full disclosure. I have seen people successfully treated with it on this forum and I have seen someone recurring after treatment which did involve a more complicated intervention in the end ! 
    I will try and ask again to see if anyone has anything more relevant to add as I am confused too.

    Take care ,

    Court 

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  • Hi Ewok,

    Thank you for your encouragement.  Haven't been ignoring you, just not able to go on my computer for a few days. I'm glad to hear you have done so well with an APR and are coping with a stoma well.  Also, the main thing, that you are cancer free.  My mind is going round and round at the moment and am suffering from the equivalent of scanxiety! 

    Jane

  • Hi Court,  I did find it very confusing and think, if I don't get clear margins, I will ask to speak to the oncologist and mention Papillon.  It may not be suitable for me because I have already had surgery to 'remove' the tumour and it's a T1/T2.

    Anyway, I do appreciate you looking into it for me.  The support on this site is wonderful.  Nobody else knows exactly what you are going through but the people on here all do!

    Thank you again

    Jane