Hi, I have cervical cancer and I have been told today that it has responded to chemotherapy and immunotherapy so has reduced in size. This is great but on Friday they will have a meeting to discuss if I will have surgery to remove the cancer. This will leave me with a urostomy and a colostomy bag. I am scared as it’s a major operation and also how it may change my life.
Has anyone else on here had this surgery? If so could you tell more about it.
Thank you in advance.
Hi Purple girl and welcome to the group.
I had a total pelvic exenteration for recurrent cervical cancer 5 years ago this month. It is a massive surgery with a long recovery but you can live a good life afterwards.
What kind of things would you like to know about, and I’ll try and answer any questions?
Sarah xx
Hi Purple girl Vikki
To answer your questions from my experience, yes you would be able to do the tasks you have mentioned after a few months. My first fairly long walk around a local nature reserve was 3 months after my surgery but I still needed to use a walking frame. I can do gentle gardening, but we shouldn’t be lifting anything heavy as we are at risk of hernias under our stomas. I don’t drive, but if I could I would be able to.
it takes time to adjust to having 2 bags and managing them after surgery but gets easier with practice and as time goes on. I don’t find it difficult to manage them now, but it’s tough in the beginning as your stomas settle and heal and can change size. I had many leaks from both bags in the early days, but it can take time to find particular bags which suit your needs and I found there was a lot of trial and error in the first few months-there is no “one size fits all”
My cancer was fully removed in my surgery with clear margins, so I didn’t require any further chemo or immunotherapy. The main thing after surgery is how exhausted you are, and how long it takes to recover. It’s not a case of every day you improve-you can have set backs along the way so it’s not always straightforward.
I hope your appointment goes well tomorrow and also keep asking questions here if you need to. The medics know all about the surgery and mechanics of it but have no lived experience of life after a total exenteration so we’ll try to help you if you do go ahead with it.
Sarah xx
I’m over in Nottinghamshire, but right from my original diagnosis I’ve been treated in Sheffield which is about an hour and a half away from us. A long way every day when I was having my chemoradiation!
I only ever had Cisplatin with my radio so don’t have any experience of the other chemos. I went for a salvage hysterectomy after my cancer recurred, which was unsuccessful so I was opened up and stapled up again when they saw the radiotherapy damage!
Then I went for the total exenteration 9 weeks later and to be honest wish I’d never tried the hysterectomy as it wasted a few months overall and I was in a lot of pain with not being on any treatment. My recurrence started with an 11mm tumour which had grown to 5 cms by the time I had my big surgery-it got very aggressive so I had my op just in time before it spread outside my pelvis.
I needed several scans before surgery-ct, mri and pet, and I had 3 surgeons doing the op-colorectal, urology and gynaecology. It’s likely you will need some up to date scans before a decision on surgery.
How are you getting on with chemo? I hope you’re doing ok with it, but I also hope you’ll have a chance at surgery as it gives the best hope of getting rid of the cancer.
Sarah xx
It’s not too bad but I have bad peripheral neuropathy the week after. I still have it now in my feet but it’s not too bad. I am a positive person and like to be ‘on the go’ so not great with enforced rest!!!
Like you I had 5 weeks chemoradiation plus brachytherapy but it didn’t shrink it much and it was still in 1 lymph node. I was annoyed! 
It’s more positive now which is good. Having immunotherapy too so think that has helped.
I will let you know what they say. Thank you so much. xx
This my current situation! 
I only managed 4 chemo as it caused a pulmonary embolism and nearly killed me, and I did 32 radiotherapy sessions…couldn’t have the planned brachytherapy as I wasn’t allowed the general anaesthetic after the embolism so that was a real blow for me-I knew that brachytherapy could have been the final hit to my cancer. But I try not to look backwards and I’m glad that at least I could have the exenteration.
I had no idea my chemo would be in a black bag! I expected it to have a skull and crossbones when I first saw it!
Sarah xx
