Rectal CancerTreatment

Hi Old Greg

Sorry to hear of your problem. My experience was slightly different, I had a rectal tumour and a lower anterior resection (LAR) and there was just enough of the rectum to remake a connection. However I did have the chemo radiotherapy before the surgery and it shrunk the tumour to the point where the surgeon almost didn't operate. So that treatment can work and be of benefit. I would say though that it didn't kill all the cancer, the surgery did that.

I had an ileostomy for a year before a reversal and a friend of mine has had a colostomy for over twenty years. If you do have to have a stoma they are manageable and you can get on with your life with little problem, it just becomes a new regime. Its not something anyone wants but it can save your life.

Is the reason the surgeon is suggesting this procedure that he doesn't think there is enough rectum left to re-connect it? If you are confident with his ability and experience it will help your decision perhaps.

I wish you all the best whichever way you choose.

Cheers, John

Hi John, thanks for your reply.   Yes the reason I've been told by the surgeon an LAR is not possible is the cancer is too low in the rectum. When I had the colonoscopy it showed up almost immediately and luckily was the only cancer found.

My head says take the surgeons advise and come to terms with having a stoma. My heart says if it is one only a small area why not give the chemoradiation a try, I'm fit and healthy. I'm told the success rate is only 20% but I could have the surgery if it is not effective. But then am I being realistic ?

I have an appointment with the stoma nurse today, maybe this will help me decide. There are a lot of positive reports from people living stomas and its probably the most sensible option.

All the best

Greg.

Hi Ol Greg

Yes! I was diagnosed with low rectal cancer out of the blue last December and was initially told by the surgeon I would have the same op as you. But after the MDT meeting they decided to try me on the new international protocol of chemo first, then chemoradiation, then the op to remove the tumour. I had a stoma first to stop irritation of the tumour (T3, 4.5cm, only 1cm from anus). I have just completed the 4 cycles (3 months) of Capox chemo - and the post-chemo scan last week showed “excellent response to chemo” and “no evidence of tumour”. So I am one of the 20%! It is more than I dared hope for, I know I am very very lucky. They have decided I will now have just one week of radiation (no more chemo)  to zap any pesky stray cancer cells, then hopefully I will just be monitored. There is even talk of reversing my stoma later. I know everyone’s case is different but I would definitely ask about the Rapido Trial, which advocates chemo and radiation before surgery for certain types of tumour. I think a 20% chance of success with the potential for no surgery is worth a go! I know I am not out of the woods yet, but I am now much more hopeful.

Btw the stoma did take getting used to, but now it is fine and just a routine part of my life. 
Very best of luck xx

. It’s such a difficult decision isn’t it? My friend cycling Johnny was one of the 20% success rates but his unfortunately returned and then he went down the surgery route. He posts mostly on the bowel  cancer uk site but I’ve (hopefully) attached a link to his profile page so you can see his treatment so far

https://community.macmillan.org.uk/members/cyclingjohnny

Hope this isn’t too pessimistic but just wanted to show you both sides of the coin

Take care

Karen x

Hello Nelly, thank you for giving me a bit more information on what the chemoradiation treatment is like. It gives me a bit more understanding of what to expect if I choose that route.

It seems you have to be prepared for a lot of waiting, and you need to be strong minded enough to take the results in your stride. I expect like others here I never really believed they would find anything when I had the colonoscopy, and when they did I convinced myself simple surgery would cure me but it's not quite that simple.

It's good to talk to other people who also have deal with this, especially when you are new to this illness.

Best wishes to you and I really hope your results going forward show you can get beat this Xx.

Hi Kareno, thanks for your reply regarding your friend. Not pessimistic, but realistic. It kind of backs up what the hospital have told me if their 20% figure is correct.  I will take a look at the link.

If it wasn't for permanent stoma I think it would be surgery would be an easier decision.

Having said that after a chat with my stoma nurse this morning I think this may not be such a difficult thing to deal with if approached in the right frame of mind.

Regards Greg x

Hello Veggie Lady,  I seemed to have opened a can of worms ! Its great to hear how well your treatment is going and you sound like your coping so well with it. All these replies have not really helped me come to a decision yet but given me food for thought from real peoples experiences rather than just statistics.

I will ask about the Rapido trial when I have my next meeting with oncology.

Best Wishes Greg x

You have a difficult decision to make...& unlike you, I have not had to face this surgery. I had a left Hemicolectomy two years ago, which was in my descending Colon & part of the Sigmoid...so there was room to rejoin - without the need for a Stoma bag. I can't offer any advice either....but from what you've posted here....'You are a young, fit & otherwise healthy man.' If I were faced with that decision (even at my aged 71 yrs.) I would opt for the Surgeon's advice of having the Op. & the Stoma. Yes, any Op. is not pleasant....but you'd be surprised how quick the recovery time can be...& I am sure that there are many here who live quite comfortably with a Stoma.

Wishing you all the best

Marianne

Hi Marianne,  yes I am unlucky the cancer is where it is ( hence the need for a permanent stoma) if surgery is undertaken. It would probably be the best procedure for a more certain successful outcome.

No one wants a stoma but most people seem to manage with one ok once they get used to living with it and I am slowly coming around to accepting the idea.

Thank you for your reply and hope you stay well.

Greg