Surgery exenteration

Hi again  

We’ve chatted before, so I’d be happy to try and share any of my experiences of having a total pelvic exenteration. It’s very difficult to connect with others who have had this surgery as it’s quite rare, and I have only met a couple of women in the community who’ve had it done, none to my knowledge for recurrent womb cancer. 

What particularly would you like to chat about? It’s a big topic, and a massive surgery so I’m not sure what it would be best to try and help you with? 

Sarah xx

Thank you.i am 72 I got this in the womb had ut out then 18 Mt's later got a tumour in vagina. Had radiation  for 7 and a half weeks daily.top dose.tumor came back in another place in vagina almost immediately  .so had 6 sessions of direct brachy and now it's come back after a year. I may be offered this if my pet scan is clear.so what I woukd like to know is.

Are u glad u had it.whats the healing process like.how long ago did you have it? Are u younger than me.what is your mobility lime? I walk with a walking  frame as tge radiation  damaged my back giving Mr fractures.

Did u have any complications. I live alone that's why I asked.how r u getting on now.thank u so much for answering  .it may help me to.make an informed decision. I get my results approx April 18th  I am being treated in a centre of excellence  in mi can't see my text so will stop

Hi  

I’ll answer what I can from what I went through, but your pet scan being clear would be a critical factor in going ahead with surgery, as it is not possible to have an exenteration once cancer has gone beyond the pelvis. Luckily mine was contained. Although your recurrence is endometrial cancer and mine was cervical, the principles are the same-everything in the pelvis is removed. 

Absolutely I am glad I had my surgery! I am SO thankful it was possible for me- I have never once for a moment regretted it as it saved my life.

I am almost 62, and I had surgery at 58 so a little younger than you, but I had just gone through an attempted salvage hysterectomy 9 weeks before my exenteration surgery and had aggressively growing cancer, so I wasn’t as fit or well as I could have been to have my operation at the time.

My surgery was 4 years ago in March 2020.

I have another issue with my hip which limits my mobility-nothing to do with the surgery- but will shortly be starting to receive physiotherapy, as I had a stroke a couple of weeks ago. I stress I had no mobility issues due to, or connected with, my surgery.

I had no complications at all after surgery. I was discharged after 2 weeks and have never had to go back for any reason connected with the surgery. 

I won’t sugar coat it-the healing time is long-this is a massive surgery. I was told up to a year of healing time by ladies I had met personally who had been through the surgery and that’s probably about right. Medics think it is a shorter time, but I chose to listen to ladies who had been through it personally for their experiences. I started to feel better around 6-8 weeks after surgery, and within a few months I was much stronger and getting on well. I needed a LOT of rest to heal.

I’m not sure what your family situation is like as regards having support, but it would be very difficult to manage without help on discharge from hospital. The tiredness and weakness is incredible-you need a lot of help with everyday tasks. Obviously losing your bladder and bowel (if  that is the case for you) means adapting to a life with two stomas which involves a lot of care and management, especially in the early days as the stomas settle and heal. 

You mentioned being treated in a centre of excellence-are you in the UK? I was treated for my cancer at Weston Park in Sheffield and had my surgery in the Hallamshire hospital with a team of 3 surgeons working together:colo rectal, urology and gynaecology.

Not everyone loses their bowel and bladder-sometimes it might just be one or the other. My bladder had to be removed but my colon had no cancer, only radiation damage. I asked for my colon to be removed since I was already having my bladder removed due to the cancer spreading and wanted to limit my chances of another place for a potential recurrence. 

It’s a very personal decision to have this surgery, but it is the best chance of a curative outcome for recurrent cancer. My other option was palliative chemo which I didn’t even consider for a second. I wanted to have surgery. There are no guarantees of course with anything, but I have done extremely well in the last 4 years and am really glad to have had my surgery.

I hope this might help a little, but you will need your scan results to know if this will be a possible option.

Sarah xx

Thanks for that.you sounds strong like me but I live on my own near my kids . So sorry you had a stroke was that related to your op ? I am at the christiez mancheste.yes I am fully aware of the pet scan results and if I have cancer anywhere else I won't be offered the op  but I am doing me research before I see the consultant for my results .off to have pet scan now take care andthsnks

My stroke was not related to my surgery at all-it was a small blood clot in the brain, and I have no lasting effects from it, though I need to take blood thinners, which is standard practice afterwards. I have not been physically affected in any way. 

I’ve also suffered from a blocked dile duct, and have had my gallbladder removed, but again nothing to do with exenteration surgery. I had gallstones identified at the time my cancer was diagnosed, but treating my cancer was the priority so I did not have treatment for that until it became a problem. From my gallbladder surgery surgery I was out of hospital in a matter of a few days and had no problems at all-I healed really quickly as it was done via keyhole surgery, despite the difficulties caused by adhesions from my exenteration. The op just too much longer than normal. I was discharged from the gastro clinic after my first check up. 

If you do have surgery, I think you will need help at home initially. I don’t know anyone who managed alone and I know many people who have been through it. All the best with your petscan.

Sarah xx