Low Rectal Cancer Diagnosis - newbie on here

Hi Lisa,

I am 54 and had more or less similar situation. Found blood in stool about two months ago and see my doctor whom immediately ordered a colonoscopy as well as CT Scan done. Confirmed a malignant growth at rectum. Immediately suggested removal of growth. Initial diagnosis indicated growth was localized. Was reasonably relieved although it is not confirmed until hispathology (lab check ) is done on the removed growth and it’s associated lymph nodes.

Operation was successfully done two days later. 6 cm of my rectum was removed. Growth has to be sent to lab for hispathology. Meanwhile, at the same time, illeostomy was done. It means a stoma bag is fixed at the end of the small intestine for all faeces to flow into. Effectively, no faeces will go into the rectum and anus. This allows the healing of the operated rectum. 

Hospitalized for six days and waited for another few days for hispathology result. When results was out, thank god it’s stage one, which means no further treatment such as chemo or radiotherapy is required.  Some call this stage as “cut and cure”. 

For six weeks, I lived with the stoma bag... essentially cleaning it about seven to eight times a day. Apart from this, it’s just normal life albeit less going out of home. 

Two weeks ago, I had what it’s called a reversal illeostomy operation. It is essentially removing the stoma bag and joining the intestine back together. 

After this was the more trying time because I had (or the body system) to learn the bowel movement back to normal. The first few days after the surgery , I had loose stools and was practically going in and out the toilet all the time. After two or three days, the stool became harder. And frequency of going into toilet reduce. But still it’s about 10 times a day (as I am writing now, it’s two weeks since the reversal date). I learned that I have to be patient and may take six months to go back to normal. 

Apart from these inconvenience of bowel movements, I am thankful that I am overall well now. Will watch my diet in the future and take more antioxidant supplements and food. 

It’s great that you are positive about your condition and it is definitely a prerequisite for a full recovery.

All the best to you and hope my sharing will give you some mental preparations what to expect. Any questions, please post here. 

Luv..

Thank you for your reply, I am so pleased that you have come through this and yes it really helps me to feel even more positive about the path ahead! Much appreciated x

Hi Lisa,

I am also 42 and only a little ahead of your timeline. I had a previous Breast cancer and now have rectal cancer. I have completed my chemo and radio and now am awaiting surgery where i will have a permanent colostomy formed. 

My children are younger than yours and I have always been honest with them. It definitely affects them at times, especially when they try and think to the future.

I have had a pet scan as I did not want to go through surgery without being completely sure there was no more cancer lurking around.

Hope all goes well with your scan.

Thanks Fran99 for your reply.

To have already gotten through breast cancer and now been told you have rectal cancer is rotten!

Can I ask, how large was your tumour? What stage etc? What was it that meant a permanent colostomy as opposed to temporary? I trust that the PET scan was clear? Sorry, so many questions! I just feel the need for so much information at the moment so that I can be prepared for my results. 

My kids took it well, I told the school too so they are aware, just in case the younger two show any upset whilst in school. What age are yours? 

Good luck with your surgery. I’ll be following your progress.

Sending hugs xx

Hi Lisa and welcome. 

Sorry you've had to join us but, as you say, that was £150 well spent. Unfortunately a lot of doctors assume that you're too young to have bowel cancer - I was 53 when diagnosed but luckily my doctor fast tracked me for a colonoscopy but even then she was as surprised as me at the result.

Once you've had the results of your scans then your treatment plan will be explained and I found that things moved quite quickly then.

I had chemoradiotherapy for 5 weeks before surgery and it shrank the tumour from 40mm to 10mm so the surgeon was able to remove it with clear margins (ie. a clear area surrounding it). Everything is then sent away for analysis and mine came back as T3N1M0. As there were 2 lymph nodes affected then I had follow up chemo but don't worry about things like for that for now - we'll cross that bridge if and when we get to it.

My tumour was 9cm in so I have a temporary ileostomy which I am hoping to have reversed very shortly. If the tumour is very low down in the rectum then that can be when a permanent colostomy is given.

I found it easier to break everything into little steps concentrating on the chemoradiotherapy to start with before worrying about the next step.

Try and take somebody to the meeting with you as 2 pairs of ears are better than 1 and write down any questions that you have.

Many members have filled in their treatment journey on their profile pages which you can see by clicking on their name but everybody is different and has different reactions to things so don't get too hung on things.

Take care and keep posting if you have any questions or worries

Karen x

Ps try and keep that positive attitude - my colorectal nurse is a firm believer that it is a huge benefit

Hi Lisa

That first diagnosis is very scary, but you do have time to think about your treatment.

In January 2016 I was diagnosed with a very low rectal cancer - staged T3 N0 M0 through scans and biopsy (that will mean more when you get the scan results). I was picked up through the screening system, having had no symptoms. I was told that I would need surgery to remove my anus, rectum and part of the colon, leaving me with a sewn up bum and a permanent colostomy.

I searched for an alternative as I didn't want life changing surgery without trying everything else first. When I say alternative I don't mean swimming in baked beans and running through a field naked singing 'Jerusalem'! I wanted a proven NHS treatment, just not surgery.

I went for a second opinion with Professor Sunny Myint at the Papillon Centre, Clatterbridge Cancer Centre on the Wirral. He said that I was a good candidate for the Papillon boost, plus chemoradiation, because there was no spread. This is an NHS treatment, available since 2000, and there are four centres around the country that do it - Liverpool (the Wirral), Guildford, Hull and Nottingham. It involves having the probe inserted into the rectum and the radiation is delivered directly to the tumour. According to NICE you should have been given the information about this, but unfortunately many surgeons still don't follow NICE guidelines (issued September 2015). Many doctors will refuse if you are diagnosed with T3, saying it is only useful on T1 and T2 tumours, but this is not so. It is a treatment offered to elderly patients as a matter of course if they are deemed too fragile for surgery.

You can find out more on www.contactpapillon.com/about-papillon-treatment/  and there is a video on youtube that follows a patient through the treatment.

I achieved a "complete clinical response" which means the treatment killed off the tumour and NO SURGERY was needed. Even though the treatment was a bit gruelling, I am glad I stood up to the surgeon and chose this alternative NHS treatment. It is available on the NHS, or you can go privately. Professor Myint has private patients as well as NHS.

I have now been in remission for 17 months, have a fully functional bum and life is pretty much back to normal. I have check ups every 3 months involving a sigmoidoscopy.

You have nothing to lose by asking for a referral to Professor Myint. He will instantly tell you if he thinks you would be a viable candidate.

Have a good think about what you want, what treatment you can live with, and what is right for you. I was told that rectal tumours tend to be very slow growing, so you have time to think.

I do wish you well with your choices and your treatment.

All the best

Catherine

Hi Karen,

Thank you for your reply. It sounds like you’ve been through the mill but have come through the other side!

Your message is so helpful and informative and I will take your advice with regards to taking everything step by step and remaining as positive as possible.

Thank you

Lisa xx 

Hi Catherine,

Wow that is amazing, how different it would have been for you if you hadn’t pursued the alternatives!! Interestingly I will have treatment at Clatterbridge so I will hopefully be in the perfect place to also consider alternatives if it comes to it! 

Thank you for your message and kind words.

Lisa xx

So many "young" patients here.

Hope you have all been genetically tested for Lynch Syndrome www.lynch-syndrome-uk.org

I was diagnosed at 44 after testing positive for Lynch. Mum was diagnosed at same time and had her op 1 month after me so we went through chemo at the same time.

Mine was high rectal stage 2 with vascular invasion hence 6 months chemo, mums was stage 3 with 1 lymph node. 4 years on we are both cancer free. Mum was rejoined at surgery as hers was right sided. I was told perm stoma but then consultant decided i could have a J pouch. Still have problems now but i am alive and cancer free.

Good luck to you all with treatment, be kind to yourselves and rest as much as you need to.

Hell xx

Hi Lisa

I'm just under 2 yrs from an ULAR.  Because my tumour was so low the surgeon said I may have a permanent bag.  He managed to create a J-pouch.

It isn't easy going thru the whole thing and without home support it wouldn't be possible.  Each day after the operation you will feel a little better which is a good thing.  I was so wasted for quite a while while recovering.  Today I don't believe my bowel will ever be normal.  Even now  it is still unpredictable so social engagements are challenging.  But it does get better with time.  Diet is so important.

If you have a rejoin this doc will make things easier "https://www.continence.org.au/download.../improve-bowel-function-after-surgery.pdf"

I wish you all the luck in the world.  You are lucky cause you have family support.