Rectal cancer.

hi becboo, I too was diagnosed with low rectal cancer 2010 - needed to have my anus and rectum removed. I have a permanent stoma/ colostomy. I had three months of chemoradiotherapy followed by the colonostomy. It sounds horrific to have your bum seen up but for me it caused no problems. Just make sure your bum is cleaned at least once a day. I made sure I had fresh underwear every day and didn't get any infection in that area.  It is scary but you'll be OK. Make a list of all your concerns and get answers from your Surgeon. Take care. X.

Thanks kath. Did you have the chemo radiotherapy before the surgery? It just seems like a huge operation. Do you mind me asking how you were straight after? X

Hi Becboo,

Lovely to read your post. It seems like you’re in a very similar position to myself. However, your treatment plan is different.

i’ve just started Chemoradiotherapy 5 weeks, then break, then Chemotherapy 18 weeks, then possible operation. I’m hoping it won’t happen as like you the idea of having my bum sewn up, plastic surgery and a permanent colostomy put my head in a spin.

It looks like your surgery is planned to happen soon. I can completely understand your apprehension.

So pleased you shared your story here. I’ll be interested to hear how you get on and the responses you receive.

Sending a massive hug 

Hi Becboo

I had a different cancer and a different type of surgery, but had my rectum removed along with lots of other bits, and was left with a rectal stump and a permanent colostomy. I had the same worries as you prior to the operation, as I couldn’t imagine it, but was lucky enough not to lose quite everything down there. 

It’s amazing what you can accept and adapt to in order to get rid of the cancer. I couldn’t really visualise what it would be like but post recovery life goes on and you learn how to live with it. Tell your surgeon your concerns, and ask as many questions as you need to ask. I have a number of friends who have had both rectum and anus removed and have recovered very well. I wish you all the best with your surgery.

Sarah xx

Hi 

Hi Becboo, I too have been diagnosed with very low rectal tumor, it's just 4cms into my bottom, mines T2, with nodes involved, I found out on the 11th June, and on the 6th of october I'm having a robtic lar, I saw a few different surgeons, the last being who I now see, she's confident that I won't need a stoma, I'm prepared for it just in case, the join may leak, if it does I'll need a temporary stoma, my surgeon is going to remove all of my rectum, leaving just enough to join the colon to what's left, I'm 54, I will need chemo after surgery, though what and when hasn't been discussed, I was referred from my local hospital to Manchester Royal,  they thought I may be able to have a TEMS op, but as its so low, the surgeon there said he couldn't do it. Then I was referred to Wythenshawe,  which is where I'm having my op on the 6th, I was given a choice of 2 ops, the robotic LAR,  or it could be taken out via my bum, but just the tumor, not the nodes, which to me was not an option, as if the cancer came back, I would need a permanent stoma, at least this way I have a chance of being stoma free, or at least just a temporary one, not that it would have bothered me, having a stoma is a sll problem to put up with, rather than having cancer eating away at you, that's my opinion. I don't know where you live, but its worth asking about robotic surgery, I was looking at a LAR, huge op, and a 40% chance of permanent stoma, would definitely have one after the op, but my local surgeon said I was too young, that he would talk to some people. After the bloke at Manchester said he couldn't help, I broke down amd begged my local surgeon to take it out, and I'd live with a stoma if need be, but he pulled some strings, and spoke to the lady at Wythenshawe,  she was on holiday but took his call, that was a Thursday, Friday I had a call from the lady's secretary asking if I could go see her on Monday, she gave me a date, which was the 1st Sept, that fell through, they needed better more to date scans, after that o was given the 2 options, so she had a look when I was under general anesthesia, felt like I'd been rogered by an elephant !!! But she has talked everything thing through and I'm happy to be having something done, I've had nothing, my tumor is 3cms, but really low in my rectum. I wish you all the best, I'm sure you'll pull through, but speak with your colerectal nurse, ahe could ask your surgeon about other options, like robotic, I don't know your case, and everyone is different,  I'm glad my local consultant talked me down and referred me to see the lady at Wythenshawe. Take care Rosie

Thanks Rosie. My sister said I should get a second opinion but I just dont want to delay my date of the 5th. I will call my colorectal nurse tomorrow and ask if there’s any other way round. I’m not sure they offer robotic surgery in Leicester. I can handle a stoma but not rectum taken out. 

I think mine is low down as yours. I see the surgeon on Friday and will write down questions. Should I ask if I can be referred elsewhere? Just concerned it will delay treatment. 

Hi Becboo, I too was worried about delays to surgery, I was told it would be mid August, then 1st Sept, now 6th,Oct, I have to say if not for my local consultant,  I'd have been having the big op, but he said to me, it's probably taken years to get to T2, a few months won't hurt, do you know what type of cancer, mine adenocarcinoma, the most common and also has lots of treatment options. If I were you, knowing what I know now, I'd ask questions, I went in knowing nothing, and as I said, I was guided by my consultant at local hospital. They've just built a Christies hospital at my local one, and thought I'd be treated there, but boy was I wrong. As I said I've seen 3 different people, with 4 different ops that they would do, no question is daft where cancer is involved, ask them about the robotic option, I don't know if it would be suitable in your case, but its worth asking, also as its low down like mine, ask about TEMS and TAMS they are done via the anus, and may be wotlrth asking about. I know everyone is different, but sometimes, like me, we want to rush in, get the cancer out, that's what I thought, sod the consequences, but I've now been re-educated, sometimes its worth seeing someone else, getting a different opinion, even if the outcome is the same, at least you know that you have explored all options. It was 2 and half months before I saw the surgeon who will do my op, but she booked me quickly, I've found that if you a) play the cancer card and b) keep being a pain, then things get done quicker, speak with your colerectal nurses tomorrow,  they can then ask your consultant before you see him, if there's other options, whether things can slow down while the other options are considered. I wasn't offered chemo or radiotherapy before my op, it was just I need an op, and let's find out who can do the best job. I found it helpful to have someone with me, and to tape the conversation with consultant, as it sometimes doesn't register what's said, and if you think you've misunderstood something,  then ask colerectal nurse, they are invaluable sources of info, and will also speak with your consultant in the weekly MDT meeting, where they get together and discuss the cases of all cancer patients that need to be discussed, don't rush into the big life changing op without knowing if there's something better suited, thats just my opinion,  I am more settled knowing that I saw other people and that I don't need a massive op, it's still a big op, to remove the rectum, but there's enough of a margin to reattach my colon, I don't know your margins, but thats something you should ask, there's lots of people on here who have had many different ops, we're all different, but explore the best options, ask how aggressive it is, what the there's margins, how low down, and anything else you can think of, T2 is early, and it treatable, ask for 2nd or 3rd opinions, it's your body, and you will have to deal with the outcome, but if you're as unsure as you sound, then question everything. 

hi Becboo, yes I had three months worth of chemoradiotherapy. It was a major op for me which I had two months after the chemoradiotherapy had finished. I developed adhesions/inflammation on my intestines which caused a few problems which was unusual but the issue got resolved.

Hi Rosie,

Thanks for sharing what’s been happening in your life, I found it really helpful.

I hadn’t really thought about getting a second opinion. As you say you want the cancer gone for good. However, operations are serious and we need to think about the possible outcomes. Waiting a few weeks now may make all the difference to life in the future which hopefully will be many years.

Interested that one said you were too young. I’m 3 years older than you but age has never seemed to be a factor.

I thought it was more about the size and position of the cancer but I’m no medical expert!

It is a major decision. You need to make the best one for you.

Hope you get all the information you need so you can decide the best path to take.

Thinking of you, 

Take care...