I am in England too. I was diagnosed with a urachal mucinous adenocarcinoma in January 2006 and operated on in March 2006. A high-grade tumour the size of a tennis ball, with lots of surrounding mucous, was removed from my abdomen in Wexham Park Hospital, Slough. Half of my bladder was removed too. Post-op I was referred to an oncologist, who told me that the histology report showed that I had a variety of PMP (pseudomyxoma peritonei) and he referred me to a PMP specialist centre at the North Hampshire Hospital, Basingstoke. There is only one other PMP specialist centre in the UK, the Christie Hospital in Manchester. Both centres have an excellent track record in treating PMP. Both perform the Sugarbaker "Shake 'n' Bake" operation, which has had really successful results in the USA, where it was introduced many years ago. PMP is very rare, and the urachal variety is even rarer. I have never met anyone who has had it, and my GP had never come across it in many years of running his practice.
Although the operation I had in March 2006 was not performed by a PMP specialist it appears he did a great job. I have not needed further surgery and the most recent CT scans I have had at the North Hampshire Hospital show that I am currently in remission. I have not needed chemo either. So far there has been no evidence of further growth, and the slivers of PMP mucous left over from my operation in March 2006 are shrinking and even disappearing. In the long term I may need further surgery (the Sugarbaker operation) if the PMP returns, but right now I am fit and well and about to go skiing in Austria. So there is hope...
On 10/7/2007
Geoffrey Paul wrote:
Hello all
Geoff and I are in England. It seems strange to find myself part of an international community under such circumstances.
My husband Geoff had an initial diagnosis of bladder cancer in July and had a bladder resection in August to remove the tumour. When returning for the histology report we were told that the diagnosis had been changed to urachal cancer and that a radical cystectomy (when the bladder would be removed along with the prostate and lymph nodes) was needed. This took place at the beginning of September.
Geoff is recovering well post-op but the latest feedback says cancer cells were found in some of the lymph nodes, that the cancer will re-occur and they don't believe there is any treatment.
We actually want to fight this and does anyone know anything about where to get treatment in the U.K. or Europe or how easy it is to get treatment in the USA if you are not resident?
The main problem locally in so many places seems to be that this cancer is so rare that medical staff are unsure of how to approach it. Any ideas / information on treatment or any contacts that the medical staff looking after Geoff could use would be very much appreciated.
We have 3 children and the family want to work through this together.
Hoping for some positive posts.
Thank you all.
Inez