Distance from anal verge and sphincter saving

Sorry I can’t advise on this - just wanted to say hi and welcome and hope you are ok.  If you can, stay away from Google and try and hold on to speak to your team as they are the experts and can talk you through all the options.  Make a list of everything you want to ask - they will give you all the time you need so don’t feel pressured to not ask them all…!  Hope someone with a similar experience can help in some way.  Wishing you all the best…

Hi Andy,

I have the same problem and about to start radiation treatment in a weeks time. it is giving me a lot of discomfort at the moment. I believe I will be left with a permanent stoma after the operation to remove it.

Good luck

star rider.

Thanks for the reply  Star Rider. Sorry to hear about your discomfort, and the predicted outcome re the stoma. My discomfort is tolerable at the moment, but is getting steadily worse.

Can I ask how far away from the AV and how big your tumour is for comparison?

Good luck with your treatment!

Andy

hi Andy

mine is just inside my bottom and is about 30mm and bleebs a bit. it got moor painful after I had the camera that found it. I thought I had piles.

mick

Ah so yours is anal cancer? Mine is rectal cancer, a bit further up. But yeah the sigmoidoscopy has affected the feeling too.

Keep in touch dude 

Andy

Hi AndyM. My tumour was slightly higher than yours - I think it was 8/9cm from the av and 4cm in size. I had chemoradiotherapy and it shrank to 1cm so I had a Low Anterior Resection with temporary stoma which was reversed after 15 months. Sounds like you could be a bit borderline but hopefully they will be able to give you a bit of an idea after the MDT?

Please let us know how you get on?

Take care

Karen x

Thanks Karen. How's life been since the reversal?

Hi AndyM

Similar to you, at the colonoscopy I was told that my tumour was around 5cm from the anal verge and was approx 20mm.  I was told by the surgeon initially that I would need a stoma which he wouldn't guarantee would be reversible. A week or so prior to the op though I was phoned by a stoma nurse to say that it would be a different surgeon carrying out my op and he didn't think I'd need a stoma - so no appointment with the stoma nurse beforehand which seemed like good news.  However, I woke up with a stoma which, in the days after the op, the surgeon only gave odds of 50-50 for reversal.  I think they have to wait for the pathology results and they also need to make sure that there is a good join before they can say for certain.  I should also say that I went straight to surgery (no chemoradiation beforehand which they sometimes give to shrink the tumour to get better margins).

Subsequently, I have been offered a reversal but, taking into consideration a whole load of pro's and cons, I've declined. There were just too few guarantees of success and, bearing in mind the conflicting information I'd been given both before and immediately after the initial operation, I just didn't feel confident of an outcome that I'd be happy with.  That was purely my own choice though (and it felt like such a relief to finally make that decision).

With regards to the stoma, I felt a bit lost at first but it's second nature now.  I do all the things I did before, eat what I want, wear what I want, do lots of walking,  travel - just normal stuff. 

I hope that you get some good news in the coming weeks.  Good luck.

Hi AndyM. It takes a few months to settle down but I eat and drink pretty much everything now. I know that if I have a few beers with a Chinese then I will pay the price with several toilet visits in a short space of time but that’s my choice. I sometimes take loperamide if things get difficult but not on a regular basis x

Thanks for your post. It’s really encouraged me to discover that life can be lived again. I know everyone is different but you’re given me some  hope.

So pleased you shared your experiences.