Hubby just diagnosed!

Hi Spongy and welcome to the group, although sorry to hear about your husband. A secondary TURBT is routine in most cases, just to check nothing has been missed. BCG is designed to mop up any rogue cells and help prevent future recurrences. Many people here have had or are having this treatment. Bladder removal is a big operation so a lot to take in to consideration. We know how scary the early days can be, but be aware bc can be treated successfully. Feel free to ask anything you like. Best wishes.

Hi Spongy,Welcome to this friendly group.There is lots of advice,support and experience here so I hope you will find it helpful.Best wishes to you and your husband.Jane

Hello Spongy, I was diagnosed with T1 HG bladder cancer in June 2020. I actually had three TURBT's from June to December the same year. I went for BCG immunotherapy as I understood it had quite a good success rate. I couldn't get anywhere near 3 years of treatment and only completed half of that. As has been previously stated some people are far more tolerant of the instillations than others, I'm afraid my bladder became a bit too battered. To this day I do suffer from painful episodes and the usual frequent peeing through day and night. My next cystoscopy is due in May, two months later than was planned. I wish your husband well on his journey, be comfortable in the knowledge that on this forum there are plenty of people here who are in your husband's position and ready to offer advice to help.

I have felt at times things have not been explained thoroughly enough. I always remember having that first cystoscopy which showed multi small tumours. I was told I needed a TURBT (which I knew nothing about). They sent me directly from there to the premed clinic to get it all booked in, ECG, blood pressure and everything else you needed before an operation. Talk about a whirlwind, I got home thinking in the morning I started out fine and within a matter of hours everything had changed. Now it's all part of my everyday life and so far it has kept any cancer in check.

Do keep us all posted remember you will play an important part in your husband's welfare as does my wife to me. Take care.

With that diagnosis, it is the NICE recommendations to offer either BCG or bladder removal. That is because BCG is not a guaranteed cure, although it may do so & may at least defer the need for more aggressive treatment. Unfortunately no-one can say if BCG will cure/defer treatment or if there will soon be a recurrence that could be muscle invasive. Take your time to weigh up the pros & cons of each option, ask lots of questions. The kidney function could well be a heavy influence on the decision. 

I was 56 when diagnosed & with the same option, chose surgery. This was for various reasons, but I did feel I would rather go for surgery while young & fit enough to withstand it well, and to have the peace of mind I was most likely cured. Each person has their individual way of looking at things, priorities etc so will each come to their own conclusion. Hopefully you will have more time with the consultant after the second TURBT results to discuss the options. 

Hi Spongy, my husband had G£ ["aggressive"] PTa but so many tumours he said his whole bladder looked like inside out cauliflower. That was 2017 and he had TURBTs, 6 BCG, a single recurrence. They offered 'equal' choice with virtually NO info, between RC=radical cystectomy=bladder removal, more BCG or Mitomycin.  He opted for the Mitomycin and is fine now with regular checks. BTW he is now 77

Hope that helps,

Denby