Pelvic Exenteration

Hi LOO1 

I had the pelvic exenteration in March 2020. The thought of it floored me at the time, but I’d known from asking questions when my treatment finished and I got a NED result that this would be the likely option if my cancer recurred.

I did see your reply in a thread previously when you mentioned having a hysterectomy, and if you haven’t read my story before (just click on my name to do that) then you’ll see my surgeon tried a salvage hysterectomy with BSO (removal of both ovaries).

I had scans but neither the mri nor ct scan picked up the extensive radiation damage to my internal organs from my 32 sessions of radiotherapy, so when I was opened up, it was deemed too dangerous to proceed-risk of fistula and further spread of my cancer.

My bladder was stuck to my womb, and my surgeon sought a second opinion while I was under anaesthetic. The other surgeon agreed that to try separating things was too risky, so I was stapled up with nothing removed. I was absolutely devastated when I came round from the anaesthetic to find I’d not had the surgery. My recurrent tumour had been very small, less than 1cm, and I thought surgery would have been successful.

My next step was discussing an exenteration surgery which I also thought was very extreme given the size of my cancer. However, in the weeks after opening me up for the proposed hysterectomy, my cancer became very aggressive and spread all over my womb and bladder and grew to 5cms in my cervix. 

I was in quite a severe amount of pain by this time, and to be honest wanted to have a chance of getting rid of the cancer so I felt surgery was the best option. Chemo would have only been palliative for me, and I wasn’t ready to give up on the chance of a cure.

I was only stage 2b at my original diagnosis, didn’t have a huge tumour, and had no lymph node involvement, so it was quite hard to believe I’d have to go through so much. The colorectal surgeon confirmed there was no cancer in my bowel, just radiotherapy damage, and he could save it for me. However I asked him to remove it and give me a colostomy since I knew I’d be having my bladder removed anyway. I wanted to reduce my risk of recurrence as much as I could by having everything removed.

With the benefit of hindsight, I would have pushed for the total exenteration without attempting the hysterectomy. I run a support group for exenteration surgery, and 2 of my members tried the hysterectomy routs post-radiation without success. They both had to have exenteration surgery like me. 

I’ve never regretted it, not once even for a moment. I am 5.5 years beyond my surgery with no recurrence and considered cured. Happy to answer any questions about my experience if you’d like to ask anything.

Sarah xx

Thank you for your quick reply Sarah. I know I’ve read your story before and I’ve just re-read it again. I think because I was mentally prepared for a hysterectomy this discussion today was just a left field curve ball that I didn’t see coming. 
ultimately I will need to do whatever I can to actually become cancer free, and the surgeon did say that an exenteration would give a higher chance of no recurrence but again, it also sounds so drastic given the fact that my remaining tumour is only on the cervix. But he did mention tumour margins and that a simple hysterectomy coils potentially not guarantee that he got it all out. 
what lead time did they give you, between first discussing this as an option and then having the surgery? Did you seek other opinions?  Did you say you know of women who’ve had a hysterectomy first and when that didn’t work exenteration was performed. I presume they wish they had gone for the exteneration straight away or do you think they are happy they tried the less aggressive operation first before doing the extreme? It’s a life altering surgery and it’s like my wind has been knocked out of me yet again in this up hill battle. 

head is just racing to be honest. 

Yes, I can completely identify with the mind racing aspect of all this! Only my cervix lit up in a petscan, and it was so hard to comprehend something so small there required such drastic surgery ultimately. 

When I had the exenteration, I had 3 surgeons working in tandem who encouraged my gynae surgeon (she told me later) to take a little bit more, and then a little bit more. Ultimately this gave me clear margins up to 4.5cms which she said was the best they’d obtained ever at my hospital in this surgery.

I had my surgery 9 weeks after the attempted hysterectomy. We discussed it very soon after the hysterectomy attempt, because the risk was that delay would put me at risk of the cancer spreading outside the pelvis, where surgery wouldn’t have been possible. It was also difficult to schedule the 3 surgeons to all be available at the same time-my gynae surgeon wanted specific urology and colorectal surgeons who were at the top of their field of expertise. 

I never sought a second opinion because that would have taken too long and involved travelling somewhere beyond Yorkshire, probably to London or Manchester which I wasn’t fit to do. I also trusted my team, so didn’t feel the need. 

The 2 friends I have from my support group who’ve had the exenteration surgery regret trying the hysterectomy first, and like me wish they’d gone for the exenteration straight away.

Others in my group tried the hysterectomy post radiation but then their cancer spread outside the pelvis and then exenteration surgery was no longer an option.

Some ladies in my group tried chemo but their cancer recurred-one is currently now trying to get the surgery as her chemo hasn’t worked, but it’s not looking to be a possibility. She wanted to try the chemo and was convinced it would be enough to cure her, but that’s not been the case unfortunately.

There are at least a couple of ladies in this group here on Macmillan who have had a hysterectomy post radiation and I hope they may come along and post.

My team have never used the phrase “cancer free” with me at any point in my treatment or after surgery. The most they will commit to is no evidence of disease as small cells remaining after treatment and/or surgery cannot be picked up on scans. It was at my 5 year post surgery follow up this year that my consultant confirmed she considers me cured. 

This surgery is life changing, there’s no doubt about that, but I prefer to think of it as life saving because I wouldn’t be here without it. For some ladies, the thought of exenteration is a step too far, and they have refused it. It’s a very personal and individual decision to go ahead with it.

I always tried to think of the potential successful outcome rather than the process to get there-I chose not to think about the surgery itself in case it scared me too much to go ahead at all. My odds were not good at all of surviving, let alone for 5 years afterwards, but I’ve successfully defied those odds and hope to continue to do so! 

Sarah xx

Thank you so much for this information and for sharing your thoughts and feelings about your decision about going ahead with surgery. I will take the next few days to try and process it all and see if I can get this additional vaginal exam under general anaesthesia booked in to get further clarification. Thank you again

Hi I had a pelvic exentaration 18 months ago after having cancer for th second time. It is a big operation and life changing but I’m here and that’s the main thing. 

l had my pelvic  exentaration on the 1st of October 2025 and l thank God l am recovering well.