Hello
has anyone else had treatment for this very rare non-papilloma virus cervical cancer? I have had 4 ops and also chemo and radiotherapy but it’s still spreading. Very aggressive. Next and only step left is apparently total exenteration in January.
this scares me more than any of the above
I am 69
anyone else experienced this please?
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
Hi I’ve had a pelvic exentaration in may 2024 due to my cancer returning over 20 years ago. It was my only option to get rid of the cancer. It’s been a tough 7 months and still recovering. I’m just struggling with the 2 stoma bags I’m left with. You’ll get through it. I was in hospital 2 weeks and didn’t think I would get through it
Hello. Thank you for replying. I am worried about how long I will need to stay in hospital and hope I’m not immobilised in bed so that I get a dvt. I have a surgeon who is confident and assuring but two stoma bags must be very hard. I will remember your positive words when I’m in there. Probs happening very end of January. Gulp
They will make you move from the bed to avoid a DVT-they are very conscious that you try to avoid getting this, so try to have trust in your team.
We are all different, but I don’t find it difficult to manage two stomas-for me they quickly became part of my life and easy to deal with, but others may find it tougher. A lot is to do with acceptance and your own attitude in adapting to a different type of life.
Sarah xx
I was in hospital 2 weeks I was out of bed the second day and trying to walk. It was tough . I thought I had accepted everything but as time went on I’m struggling the way my life is now with 2 stomas.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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