Goodbye BCG hello Cystectomy

Leo, wishing you all the best on your future treatment journey. Garviv 

Hi Leo,It should be a huge relief for you,the pain will gone once you have got over the op discomfort.No wonder you have been in so much pain with a hole in bladder.I can empathise as I was in agony pre op from the Interstitial cystitis and the tumour.Once you have recovered you can get back to a good life.Good to hear you have a great surgeon and specialist nurse.Best wishes Jane x

Best of luck for November, it will be a relief for you for sure.

Take care.

Trevor 

wishing you the best of luck old BCG buddy. No wonder you were in pain, good grief man, a hole in your bladder. I think you will get through the RC and be on the road to recovery in no time. I think you have time now to prepare for the recovery , and the lovely folk on here will of course have top tips to help you with that. I am a bit of a list maker myself, I find that helps me. stay in touch friend

Hi Leo 
Just thought I relate my story to help you through what is to come. I had a TURBT with chemo into the bladder at the same time. This was almost a year ago and it also left me in terrible pain due to a bladder perforation. Follow up with consultant advised non muscle invasive but very high risk cancer with widespread red patches on the bladder wall around the removed tumour site. I was given two options, BCG or Robot Assisted Radical Cystectomy. I was at the time in contact with an old acquaintance who underwent BCG several times over 4 years only to eventually have a cystectomy.

Bearing this in mind and reading everything I could on the subject I opted for the Cystectomy, swayed by the fact it would remove both my troublesome prostate and lymph glands. (I’m 78 so no great loss). I was listed for urgent surgery which was done on the NHS six weeks later. YES it’s a major operation, painful at first but I was up and about and although weak was back to normal in about 8 weeks. I have to cope with daily stoma bag change, about 15 minutes to do correctly and connection to a night drainage bag. Had a few leaks at first till I perfected my changing technique and the stoma shrank a little, but that’s normal and to be expected.

Honestly it’s the best decision I ever made. I sleep 8 hours a night without having to get up for the first time in years, have the regular support of my Stoma nurse and am gaining some of the weight I lost around my surgery. 10 months on I feel really well and all my follow tests and scans have been shown me to be clear of cancer.

Hope this helps, and best wishes for a similar outcome.

The very best of luck Leo on your upcoming surgery I hope you have a trouble free recovery and get back to living life to the full. Love Lynn x

Hi Leo

Sending you all my love and best wishes for your surgery in November. No more pain for you young man

Love Ade xx

Hi Leo. Now you have something positive to focus on. Keep the fitness levels up. I hope al goes smoothly for you. Best wishes.

Now you have a plan, you can concentrate on preparing for recovery. Hope all goes well & that you'll be feeling much better by Christmas!

Hi Leo, 

Sorry to hear you had a tough time with the BCG. Wishing you all the best with the radical cystectomy. I did wonder how quickly they can get people through for this, so I am glad to see that they can do it so fast so it can get done and you can recover and get on with a life. 

Kind regards, 

Lee