Rectal cancer diagnosis

Hi Dave2311 and a warm welcome to the board. I was diagnosed with a 40mm rectal tumour in 2016 although it doesn’t sound like it was quite as low as yours. I had 5 weeks of chemo radiotherapy and it shrank the tumour by 75% - as the surgeons remove the tumour and surrounding area, the smaller the better as it gives them more bowel to rejoin. It is possible to have a complete response ie. The tumour is completely obliterated but this would be a bonus not the norm.

Before starting treatment my friend who was recovering from breast cancer told me to accept every treatment I was offered so I did. It was tough at times but I’m still here ‘no evidence of disease’ 8 years later as are many others who I’ve seen pass through the board.

A permanent colostomy may sound daunting but you will quickly get used to it and back to your normal life. There’s lots of support and advice from your stoma nurse and also on the Ileostomy,Colostomy,Stoma page on here.

If you click on my name then my profile page will show my timeline. Focus on one stage at a time and stay away from google. 
The next few months will be tough but please keep posting and we’ll help and support you through this?

Take care

Karen x

Hi Karen, thanks for your msg, yes unfortunately my tumour is right at the tip so unfortunately no where to join it back up after surgery.

Was so much info to take in yesterday but surgeon was suggesting the 5 week radiotherapy course and did mention the slim possibility it shrinks it down to nothing, got to be positive I say.

I will go and have a read through your timeliness and again thanks for reaching out, nice to spk with someone who has experienced the same thing

Regards Dave

Hi Dave2311 

There is an awful lot to take in when you get a cancer diagnosis, especially when you don’t fully know what will lie ahead.

I had a different cancer, but have had my rectum removed and live with a permanent colostomy (and urostomy as I lost my bladder too). Karen mentioned the stoma support group and I keep an eye on that particular group in my role as Community Champion (which means I’m a volunteer helping out in community here).

I’ll give you the link here-just click on it and join if you’d like to. There are lots of us there living with stomas of various types, who will help you with support advice if it turns out you do need the colostomy.

Stoma Support Group

Sarah xx

Hi Dave2311 

I had a very large rectal cancer. In my case we did radiation with oral chemo (30 treatments) followed by infusion chemo (8 rounds) to shrink the tumor then surgery. I found the radiation very tolerable. The worst part was the diarrhea which came with increased urgency. I has slight nausea with the oral chemo but it really felt more like loss of appetite to me. 

I ended with a permanent colostomy. You will be amazed how quickly tending to your ostomy becomes second nature. There is a steep learning curve at the start but you quickly settle into a new routine. It is no where close to the nightmare I imagined prior to surgery.  

Morning Susan,thankyou so much for your message,I'm being offered 25 treatments of radiotherapy and oral chemo followed by surgery..

Bag is going to be permanent, just so much to take in,and of course the worry that comes with all this.

How long roughly did it take you to recover from surgery and what was life life whilst getting your radiotherapy 

Regards Dave

Morning Dave,

If you click on my name you will see a summary of similar treatments with a sense of timescale. Looking back it could have been much worse. I have just returned from a week's sunshine in Lanzarote over the New Year, so there is something for you to look forward to; just give it time and do what the experts tell you to do (they have seen it all before). Think plumbing and pipe repairs!

Best

Dulac

Hi Dave,

My surgery was different from the one you will have. So my recovery time-line is much longer than I'd expect yours to be. Maybe someone with a similar surgery will chime in. 

Hi I was diagnosed with rectal cancer in September I am currently undergoing chemotherapy and am on session 5/6 the plan then is to have radiotherapy then an operation to remove my rectum and like you have a permanent stoma fitted. My tumour is very low down almost by my anus and it has started effecting the lymph nodes around it too.

It all seems so much to take in but I am just doing one bit at a time. My husband and I went to see a stoma nurse as initially they thought an operation would be the first course of treatment and she was amazing and gave me hope that the stoma wouldn’t be as scary as I thought. My treatment plan changed as my tumour was bigger than they would of liked and too low to remove without being shrunk first.

I hope you can get some clarity and more info on a way forward.

Stay strong 

Abbi

Hi, my husband had surgery 10 weeks ago and is doing well with his stoma. His tumor was bigger and lymph nodes were in question too. His treatment was 5 days of radiation and four cycles of chemotherapy… when they removed the area he had full response to the treatment. There was only scar tissue. Surgery was alway a must to make sure the treatment hadn’t missed anything. It’s a rollercoaster .. but just take each day as it comes. Big x 

I got similar diagnosis yesterday and same options discussed. Surgeon seems to prefer therapy before surgery option which also made sense to me. After a fairly traumatic 6 weeks the diagnosis came as no surprise so I was just relieved to be able to name it and face the next steps. Just realising it is a really big thing.