Exenteration and double stoma GAS mucosal adenocarcinoma cervix

Hi Elizabethjane and welcome to our group.

I had adenocarcinoma, not the mucosal type, but it recurred and spread very aggressively when it did! 

I had a total pelvic exenteration in March 2020, so I have been living with two stomas since then. My cancer was removed with very good margins and I’ve been fine ever since, though it’s massive surgery and a very long recovery. I was 58 when I had my surgery, after going through chemoradiation and a failed attempt at a hysterectomy. I’ve never regretted it for a moment as it offered me the best chance of success.

If I can help at all with any of your questions, I’m happy to share my experience. 

Sarag xx

Thank you so much for your reply. I have already had a hysterectomy and vulvectomy and am imagining I will be in hospital for about 4 weeks. I am most worried about infection and then leaks 

Pretty scared to be honest. Such major surgery

Hi again Elizabethjane 

Yes, I understand how scary it is to face something so big and it isn’t easy, that’s true. I was in hospital for 2 weeks from admission to discharge-have you been told it will be 4 weeks? I didn’t suffer from any infections, other than a tiny bit on my abdominal scar which healed quickly with antibiotics and didn’t require me to return to hospital-in fact I’ve never been re admitted to hospital for any reason connected with my exenteration surgery. 

When you say leaks, I wasn’t sure what you meant-are you talking about leaks from the stoma bags or something else? Stomas take time to settle while they heal, and it can take time to find the particular products which are best to use and which suit you as an individual.

Some people are lucky and claim to have never had any leaks from the stoma bags but I am not that person! I have had plenty of leaks, but in general I’d say it doesn’t take too long to manage the stomas and find what suits you. I would say the most difficult aspect of recovery from my own experience is the tiredness. It’s absolutely exhausting at first and I needed a lot of help at home, so I hope you will have support.

Sarah xx

Hi

that is all so reassuring! Thank you!

my cancer is so rare there’s no chance of any immunotherapy, so my last chance is exenteration. My gynae surgeon is very positive about the outcome. 
your info has been great thank you

xx

The surgery would not be done unless there is a good chance of success, so keep hold of your surgeon saying they feel positively about it. Ask any questions you like here and I will do my best to help. There are not many of us who have had a total exenteration, but there are a few within this community so you may get some other replies too.

Sarah xx

️