Pooh stix!

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So I had my sigmoidoscopy yesterday and the consultant attempted to remove it. Unfortunately he was unable to remove it all. Said it was about 20mm and took about 12mm and 6xbiopsies

 He said that as one side just wouldn't lift up after being injected it was likely it was deeper than was showing on the MRI. They will discuss my options at their next MDT, next Thursday. He suggested my options were a TEMS, but said that might not be the safest option or a low anterior Resection and temporary stoma. 

I need some advice from you lovely people, do you think I should ask the surgeon if they would get another hospital that use little knives to remove the rest of the polyp ( Endoscopic mucosal Dissection) as the issue he had was he couldn't snare it? Or as it hasn't spread, chemoradiotherapy to see if they can get rid of it completely and some follow up chemo?  you didnt have surgery did you? A low anterior Resection seems and stoma seems so drastic for something so small and I have another lesion on my kidney to deal with at some point? My concern is about LARS. I'm only young not sure I can cope with incontinence and diarrhoea! I'm gutted and in a bit of turmoil atm. Sorry for long post. Kerry

  • Hi  . You may well have to be guided by the experts on this but there’s no harm in exploring other options? Rectal tumours are usually initially treated with a course of chemoradiotherapy and there is a chance of a complete response whereby the tumour is completely obliterated and an option of watch and wait. I know a couple of people who have had this result and continue to be cancer free but also another who had a recurrence. You would obviously be closely monitored but would also have to be able to cope with the ‘wait’ side of things?

    Im not sure if this would be an option but you could enquire? It’s called Papillon treatment and the link is below 

    https://www.clatterbridgecc.nhs.uk/patients/treatment-and-support/papillon

    If it does come down to a LAR then the stoma would be temporary and LARS is not a guaranteed side effect. An operation is the gold standard treatment to get rid of the tumour once and for all - I know it’s what you’re trying to avoid but the worry and tumour would be gone.

    We’re all at different stages of treatment and recovery on here so happy to share advice and answer any questions. You could also give the support desk a ring on the number below and have a chat with them?

    Take care

    Karen x

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

    I totally understand your concern about LARS especially as you are young.

    It might be a good idea to  communicate your feelings clearly to your medical team and  explain either to the surgeon or your colorectal nurse that you would like to avoid Low anterior resection  if possible and ask them if any of the ideas you have might be considered to help achieve this or if they have any other ideas of their own.  You could also also discuss the possibility of brachytherapy (which Karen mentions in another reply) with them . If they don't think any of the alternatives to low anterior resection are helpful e.g. because the risk is unacceptable, at least you will get a clear explanation from them of why not.

    You are right that I have avoided surgery (so far) after an initial complete response to chemoradiotherapy. 

    The standard treatment for rectal tumours is initial chemoradiotherapy  to shrink the tumour. A minority of patients have a complete response i.e the tumour goes completely at that point and then you can be considered for watch and wait and avoid surgery if there is no recurrence but you normally only get the option of watch and wait if you get the complete clinical response first.

    Hope this helps Kerry,

    Jogey

  • Hi there 

    My treatment was straight to theatre no chemo as I was close to blocking. 
    My tumour was rectal and removed I had a temporary Ileostomy now reversed with no LARS. I was worried about it too however my surgeon said that I was a good candidate for a reversal and gaining control 

    I hope I don’t confuse you it’s just another perspective is sometimes useful 

    Sending you a hug 

    Ann
     ‍Art

  • Hi Karen and thank you for your reply. The link was fascinating and certainly something to talk about with my team. Your point about the watch and wait stress is also food for thought! There are definitely benefits to getting rid of it completely. Take care and thank you again x 

  • Thank you for your perspective, real life experiences are invaluable to me at the moment. 

    Kind regards.

  • Hi Artsie, that's a very positive reply. So great to have all of your lived experiences. It may not be everyones way of coping but having you all here is helping me so much. 

    Thank you. Hugs right back at ya! 

  • I agree that you should find out all of your options. A lower anterior resection is a life changing surgery. I had this surgery less than four years ago with a temporary stoma. Chemo/radiation generally has less long term side effects. At the end of the day, get as much information as possible, write down the pros and cons, and then hopefully you’ll come to a decision you’re comfortable with. It’s your body and your life. Wishing you all the best for a positive outcome.

  • Hi jools, thank you for your reply and advice. I read your profile, and hope you had a positive appointment and outcome in July. It's all so scary. 

    Take care kerry 

  • Thanks Kerry. My oncologist told me that my advanced cancer is due to my particular tumour, so not the case for most people. I didn’t want to scare you! All of us on here still love to hear other’s posts of positive outcomes, so I’ll look forward to reading yours.