Reoccurrence including of vulvar cancer post chemo, radiation and internal radiation in addition to radical wide excision

Hi Dream and welcome to the group.

I wasn’t in the same position as you as regards the cancer-mine was cervical, but I have had a total pelvic exenteration 2.5 years ago. I’m 60 now.

I was also warned of these same potential complications prior to giving my consent to surgery, although I didn’t have other risks. I was in a position where my option was to have the surgery or try palliative chemo, and I could not have further radiotherapy. So I can understand where you’re coming from in being between a rock and a hard place. If you click on my name you can read my story. 

You are asking for thoughts…well, my first thought would be that you would not be offered this surgery at all if there was no chance that it could work. You have to be advised of the risks of course, but they are risks and not certainties. My partner was told I had a 30% chance of survival, which I was mercifully unaware of-I thought it would be higher odds! I’m not a gambling woman, but I was prepared to do anything to survive.

I had only minor issues afterwards-a pelvic abscess treated by antibiotics while still in hospital, and a tiny infection in my abdominal wound, treated with dressings and antibiotics after I came home. I have never had further issues and never been readmitted to hospital for any reason, 

So, in the anterior you would lose your bladder, in the posterior you would lose your bowel. For me having a total exenteration, I lost both and have 2 stomas, which I manage well and have not given me any problems.

I do appreciate that you have other medical issues which might have an impact for you, but I personally would want the surgery. I have never regretted mine, and my life is pretty normal and decent now, 2.5 years on. It is a massive op, with a long recovery time, but I would have died without it and I was willing to try. Only you can make the decision of course, but when your options are limited, as mine were, it becomes a choice of trying to live or accepting that you could try chemo on a palliative basis. 

The surgery is not for the fain hearted, but offers a chance. I don’t use the word “cure” personally, but I was happy when they confirmed I had no evidence of disease and that all my cancer had been removed with very good margins.

I’m happy to chat and answer any questions based on my own experience. 

Sarah xx

Thank you, Sarah! Your input and response have been most helpful and to a point it has calmed me.I like you am in this for as long as I have the fight. As you stated a procedure not for the faint of heart. You have bolstered my strength. How did you control the pain post-op ? .

Pain post op in hospital-I was initially on a pain pump to press while I was in the high dependency unit. My epidural given before surgery failed and leaked out of my back so wasn’t much use! On the ward for the next 12 days, it was paracetamol when the nurses came round if I felt I needed it, supplemented by little shots of oramorph on demand-I usually took a shot at night to help me sleep,

I was sent home with a small bottle of oramorph-I didn’t use it all. I had paracetamol if I felt sore for the first couple of weeks. For me it was more discomfort than pain, and sitting was pretty uncomfortable as I’d had my rectum and vagina removed-lying down was better and two hot water bottles were my constant companions! Pain was not nearly as bad as I had anticipated I have to say. The fatigue was the worst thing.

Sarah xx

Hi dream, 2 weeks ago we lost my mum to vulval cancer, like you she had had chemo and radiotherapy which had no effect on the vulval tumor. She was offered palliative chemotherapy but decided against it as cons definitely outweighed the pros. The side effects of chemo would ruin her quality of life and the oncologist actually said if it was his family member he would advise against it, palliative chemo does not have much effect for vulval cancer. There was mention of pelvic exoneration however my mum was not a good candidate for this so unfortunately was not an option. My mum passed away 8/09/2022 at the young age of 66, in a hospice less than 18 months after initial diagnosis.  She would of just been starting her chemo/radio this time last year. 

If you have the option for pelvic exoneration go for it please. You have nothing to lose, please don’t give it a second thought you have a chance at life take it with both hands. 

mum suffered terribly towards the end, it is a god awful disease to have and I would not want that for you. 

Im sorry if this has upset anyone in any way but I know we all come on here for support and the truth no matter how uncomfortable it is.

I wish you all the very best for the future xxxxx