Not the outcome I had hoped for, but there is hope.

Hi Sticks and welcome to the group although sorry to hear of your recurrence. Not come across the GUSTO trial so please keep us up with it. Several members of the group have had bladder removal and I am sure you will be along to share experiences. I went a different route with radiotherapy. I hope all goes well. Best wishes.

Thanks Rily. The GUSTO trial is being lead by Professor Hussain at Weston Park Hospital in Sheffield. I had to google it myself as I didn't take it all in at my consultation. It's aimed at tailoring the chemo to the individual patient using their DNA. Lots of forms to sign granting permission for them to use my DNA which was taken from my biopsy. Other than that it's all a little beyond me so I have to trust the medical professionals involved. 

Hi Sticks,Welcome to the group.I’m sorry your cancer is now muscle invasive.I expect the men who have been through the surgery will be along to offer their support.Best wishes for your chemo trial.Jane 

Hi sticks and welcome 

Yes I had chemo and then the bladder and prostrate removed. The chemo in my case was to reduce or destroy any cells around the nymph nodes. I have never heard of GUSTO but the regime timetable sounds the same as gem/cis.

I didn't have robotic surgery my operation was back at the end of February. I suffered extreme swelling down below for around 7 days post op. My surgeon assured me it was fluid and would go away gradually which it did . There was a man facing me on the ward who had the same operation but had no swelling . I think its an individual thing 

Don't hesitate to ask any specific questions 

Best wishes 

Mark

Hi Mark, thanks for that. From what the surgeon told me it sounds more or less the same as your op, and yes the chemo is to destroy, hopefully, any cells that they may have missed. Yes we are all different and no-one can predict the after effects each individual may experience, but as they say, no pain, no gain. I'll post on here how it all goes. 

Hi sticks 

Yes please keep us informed on the GUSTO. You seem to have a positive attitude towards it all which is a,good thing.  Again don't hesitate to ask anything. It is major surgery and the recovery process is long but what needs done must be done 

Best wishes 

Mark

Hi Sticks,If you are able to get as fit as possible before your operation that will help.There are several of us on here who have been through the surgery.As Mark says do ask us if you have any questions.We are all here to help and support you through.Best wishes Jane 

Sorry to hear your news. Does show the risk with BCG, but I am glad you have a new treatment plan that is starting very soon. Having open instead of robotic means a longer stay in hospital, but I'm not sure that overall recovery is any longer. Most of the healing goes on inside anyway. Very best wishes for it all.

Good luck with your treatment 

what grade was you original tumour which they took out to come back to your muscle as i have add low grade bladder cancer for 5 years and always comes back low grade which it as 5 times  and good luck