I posted a few weeks ago but now back with a different question.
I am wondering if anyone has any experience of APR surgery as a first option? I have Crohn’s disease and due to this the team have decided that surgery would be best in my case. Apparently with Crohn’s the likelihood of recurrence after chemoradiotherapy is about 30% as it makes it resistant to the radiotherapy. I was already going to have to have stoma surgery (which would be permanent) to tolerate the treatment so I guess that this is a major operation but one I feel I would likely need further down the line anyway. They have given me the choice now between APR surgery or stoma plus chemoradiotherapy.
I am 32 and as I am in reasonable health (apart from Crohn’s and cancer!!!) they are suggesting I might recover reasonably well. But I am just scared - I have had minor surgery before and two c-sections but this is so huge and I am really frightened of the recovery or even worse that it doesn’t work and I am then out of options.
My case seems to be so complex and unusual that the oncologists all have different opinions and I am just totally bamboozled and sad to be having to make this decision.
Hoping to hear from anyone who might have had the surgery even if it wasn’t the first option given?
Hi MrsKS I had APR surgery and a hysterectomy on 16th Jan 2023. This was due to local recurrence after chemoradiation that finished May 2022. I am 51 and am not going to lie recovery was not easy and it took time. I returned to work on 5th June and am now back to doing pretty much everything I could before. In fact I have even taken up Pilates. Hope all goes well for you and any questions I am happy to offer advice.
Thank you very much for sharing your experience. I really appreciate it, seems to be quite rare now that people have these. It helps to know that you’re back doing everything as before actually as my biggest worry is that I will just be a burden or boring with my children after this surgery but really hoping I can get back to as normal as I can. Obviously won’t rush things as I was a good recovery!
Hi MiniM66 ,
Thank you so much for replying to this post & offering your support & reassurance. APR is major surgery & is always best spoken about by someone that’s actually been there.
Also I have to say you’re doing amazingly well too. Kudos to you for embracing life after this surgery & beginning something new like the Pilates. Well done!!
Hi MrsKS ,
This must be a really difficult time for you, it’s such a difficult decision to make especially when you have conflicting views even from the oncologists involved in your case!
You have age on your side & your children as your focus so if you do decide to go down the APR route you’ve every reason for a good recovery.
I’m so pleased that you’ve had such an encouraging & supportive reply from MiniM66 & hope this helps arm you with a little more information to make your decision.
If you feel able please let us know how you’re getting on.
i had a stoma..no problems..really quick recovery...easy to manage..i could have had it reversed after treatment but don't want to...i have diverticulitis and had trouble going to the toilet for years..always bloated often had to take something to help..i don't have any of that now x
I am really sorry I can't help and what a decision you are facing, my heart goes out to you.
However, I will share the thoughts I had only yesterday. I had no choice but to have chemo/radiotherapy as my cancer was advanced and in several lymph nodes. I have side-effects from the radiotherapy, aching hips and fatigue which, fifteen months out, seem to be getting worse, not better. I cope very well but do occasionally get frustrated and low about being unable to do the things I used to. Yesterday was a bad day and my mind started to wander to the 'what ifs?' What if my cancer had been localised and I had had APR surgery? After recovery, would I have gone on to have a life with no side effects, albeit a living a new normal? Would I have been able to have sex? I haven't since treatment, in spite of using dilators, as my skin is so fragile it split when my husband and I tried. There are, I am sure, many that have gone back to their old life, but I haven't.
I thought very long and hard about posting this, did a reply and then deleted it and then came back. My intention isn't to influence or confuse you in any way as I have no idea what it is like to live having had APR surgery, but I am happy that MiniM66 has answered and given you her first-hand experience.
From a layman's point of view, if your cancer does return (the absolute worst case scenario) there certainly always options but please ask the team treating you.
Whatever you decide, I am wishing you the very best outcome.
Hi Nikki thank you for replying. I am hoping that my age and my children will get me through it yes. I won’t have had chemoradiotherapy first either which I know can be a barrier to healing so hopefully that might be a help too.
I said on my last post that I would aim to keep updating because it seems Crohn’s plus anal cancer is rare - the surgeon I will have is the lead for anal cancer at the Christie and said he only sees one or two a year in my position. So I hope to help others who might face this crap (!) and struggle to find others who have too. It’s another thing for me to focus on.
Thank you Irene. I very much appreciate this perspective because I think those are some of my fears too. Sex is a big thing isn’t it, plus I would also have menopause from the radiotherapy which is another side effect I would prefer to leave for a good few years if possible. Please don’t think you have influenced or confused me - if anything it helps to confirm that it should be a good option for me and hope the recovery won’t be too awful. I am sorry you have struggled with these ongoing side effects, it truly is an awful disease and the treatment is just as brutal in any form.
Thank you so much; you have validated the turmoil I went through after pressing 'post'!
Sex IS a big thing, and you are so very young. I am 72 and my husband and I enjoyed a loving sexual relationship, maybe not at the rate of our younger days but good nonetheless! Even during the chemo I had prior to the chemo/radiotherapy, when I had no hair on my head or eyebrows or any eyelashes, it made not a mite of difference to him, he still desired me and I him. So getting our sex life back is a work in progress (how to toughen the skin in the perineum!), I am not saying it won't ever happen but put it this way, I am not holding my breath!
I wouldn't want to put anyone off the chemo/radiotherapy route as that is the standard treatment and as I said, many have gone back to normal, but it would be disingenuous not to say that for some it can result in a different set of problems. I am so happy to be here and enjoying life and appreciate every single minute but I do, on occasions like yesterday, daydream.
And thank you for flagging this up for future visitors to the site who have your particular set of health issues can learn.
Keep posting, please!