My cancer

Summary:
I have a type of cancer that is relatively easy to treat. It was found reasonably early. Treatment will have a big impact on me in the short term, and I'll have a stoma for the rest of my life. I'm not particularly worried about the cancer, and I'm not massively concerned about the stoma. I am a bit worried about possible complications of the surgery, but I'm trying not to think about them unless they actually happen. There's lots of uncertainty: we won't know about staging, chemo, impacts of surgery, how well I'll recover, etc etc until after I've had surgery.


I have colo-rectal cancer. It's a "low rectal cancer" - this means it's in my rectum and quite close to my bottom, it's not in my colon. It's an "adenocarcinoma".

We do not know what stage it is until after surgery. They remove the tumour and a bunch of other stuff and send it all to pathology for testing. The results come back after about 10 days, but there are delays in testing at the moment because of covid and monkey pox. For this type of cancer, in England, we use "TNM" staging. T == tumour, N == node, and M == metastasis. There's a good description of TNM in the context of bowel cancer here (but remember that I do not have bowel cancer). An early *estimation* is that my cancer is T2N1bM0 or T2N1aM0 -- it's grown into the muscle, there are cells in one or two nearby lymph nodes, but it's not in other organs. Don't worry too much about this - the treatment is surgery, and the surgery doesn't just remove the tumour, it also removes a bunch of stuff around the tumour. We also sometimes talk about "local", "regional", and "distant" cancer. Mine is local. This is very treatable.

For my type of cancer there are a range of treatment options. Some people have a large tumour and they need radiotherapy or chemotherapy or both to shrink it before they have surgery. I do not need radiotherapy before or after surgery, and I don't need chemotherapy before surgery. It's common to have chemotherapy after surgery. This is not to treat any tumours, it is a "just in case" course of adjuvant therapy to kill off any possible remaining cells that were released by surgery. I might need this - we'll find out about ten days after my operation.

Because the main treatment for my cancer is surgery, and that surgery removes a lot of tissue, the T part of staging isn't as important as it is with other cancers. T1 vs T2 doesn't make much difference because they're removing all the tissue anyway. Because they are removing so much tissue they will not be able to fit a temporary stoma.

While we can't give much detail about staging, we do know that my liver and pancreas are clear. The cancer appears to be located entirely in my rectum.

A quick note about 5 year survival rates: it is stupid to try to apply the concept of 5 year survival rates to individual people. 5YSRs are pretty dumb anyway, and they're mostly a thing that bureaucrats use to see if healthcare spending is targetted correctly. When you look at 5YSRs you'll often see that all they group together colon cancer and rectal cancer, and they group together adenocarcinomas with colorectal lymphomas and other cancers, and they group together relatively fit and healthy people with people who are very poorly, and they group together all ages (so me at 52 gets lumped in with hypothetical Bob who is 87), and they group together all stages (so a stage 1 cancer found very early is in the same data as a stage 4 cancer that has spread to other sites). The other thing they don't do is say whether or not they've included or excluded people who get a cancer diagnosis but who then die of something else. Importantly, knowing that the 5YSR for someone my age with my type of cancer is X% is meaningless if you have no idea what the survival rate is for people my age in general. If You see a 5YSR of let's say 72% that can be quite worrying, but if that number includes people who die of heart attacks or car accidents; or if it's including 87 year olds; or if it's including people with stage 4 cancer that's spread to their lungs and liver -- well, it's not quite so worrying for someone like me.

This is mostly good news. My type (adenocarcinoma) and stage (pretty early) and location (rectum) of cancer is very treatable. Many people have surgery and are then cancer free.

The not so good news, but certainly not bad news. The surgery I'm having is a robotic APER - abdomino-perineal excision of the rectum performed by a surgeon using a robot. My hospital has an established robotic surgery programme. My surgeon is a very experienced colo-rectal surgeon and has done a lot of these surgeries before, and he has used this robot many times before. This is a major surgery. It will have life-changing effects even if everything goes well. Obviously I'm going to have a stoma and colostomy bag, and these will be permanent. I'm not so bothered by the idea of a stoma bag, but it will require changes in lifestyle. I won't be able to lift much for a while, I'll always be at increased risk of surgery, and I'll have to cut back on fizzy drinks, I won't be able to eat peas or sweetcorn for a while. Lots of really minor things. I've been trying to find a good page about my surgery. This page is old, and for a different NHS trust, but it's a reasonable explanation for what to expect if things go as planned. The diagrams all look neat and tidy, and they give the impression that the surgeon will go in and remove just the rectum and then re-direct the colon, but actually there's a lot more stuff that gets taken out.

We talk about how we identify. I do not identify so much with the cancer patient label. I do identify much more with the ostomate / stoma label. I'm much more interested in things about living with a stoma than I am in anything to do with cancer.

In terms of care and treatment I have a very experienced colo-rectal surgeon called Mr Peacock. I have a team of colorectal nurses specialists, I have a team of cancer nurse specialists, I have prehabilitation physiotherapists, I will have rehabilitation physiotherapists, I have a colorectal support worker, my GP has put me on some enhanced access list and gave me a phone call for a chat the other night, and I have access to a bunch of VCS (basically, charities) support services in the community. This support will last for well after my surgery. I'm going to be in contact with the cancer support nurses for at least 5 years

Next steps will be to continue prehab until my surgery, have my surgery, get up and about as soon as possible, start eating as soon as possible, talk to the stoma team about how I'm doing with my stoma and appliances, aim to get discharged in 3 to 4 days but maybe in 5 to 6 days, then at home get "meals on wheels" for a few days, eat ready meals for a few weeks, do my gentle rehabilitation. I'll be talking to my stoma team about how I'm coping with my appliance, and whether it's the right one for me. They'll want to change me over from a drainable appliance (it has a sealable opening and you pour out the contents into a loo) to a closed bag (you just take the whole bag off and throw it away). I'll find out in that time if they want to give me chemo, and how they'll do that (sometimes it's just tablets that you take, and sometimes they do it as infusions in day treatment). I'll be put in touch with community services to get me out and about and doing social activity and exercise. Longer term I'll be in regular contact with my stoma team for a while, and I'll be in contact with my cancer team for 5 years. At some point after everything has settled down I'll need to go back in to have my gallbladder stent removed (the stent can stay in for 6 months to a year) and to have my gallbaldder removed too.

I know that people will want information about how surgery went. I'd ask you politely but firmly: please do not call the ward for information. Things are chaos in hospitals at the moment. I probably won't be making any contact with anyone on the 12th, but I will be in touch on the 13th. I'll ask the ward to get in touch with one of you to let you know how things went.