Feeling a bit misled

Hi Catfan . They can't tell anything for sure with a visible inspection. It is just an opinion and some doctors won't commit to anything at a flexible cystoscopy. It is the biopsy that confirms things and determines the next step. It can take up to 6 weeks for a TURBT wound to fully heal, but most people can get back to normal after a week or so as long as nothing strenuous . I hope all goes well. Best wishes.

Hello Catfan, I do tend to agree with you. I often feel as though I'm fumbling around in the dark. Unless you know what questions to ask they often leave you dangling and you can come away with with more questions than answers. Sometimes the docs/nurses know the course of action you're about to take but aren't good at communicating it to the patient.

1. I too was faced initially with immunotherapy or cystectomy on first diagnosis. However apart from a booklet given to me with the various explanations nobody sat me down and went through the pros and cons of either choices. I know we have the final say on what happens to our bodies but felt very alone in making what is a very serious decision. Take care.

BC is highly recurrent, BCG is intended to delay or halt recurrence. Often the medics quote 70% patients will be clear after first 6 weeks BCG. I was told that 50% patients having BCG will eventually need cystectomy, but some of those will have muscle invasive or worse by that time. Your husband is unlucky having a recurrence so quickly. They will probably advise treatment based on the path report of the TURBT done, without a second look. If it is high grade, but appears non muscle invasive they will likely recommend cystectomy again, as the risk of muscle invasive is increased. Some patients do opt to try more BCG, or mitomycin instead, willing to take the extra risk rather than have surgery. The next appointment with the consultant is the time to be sure to ask all the questions about pros & cons, risks & benefits of each option. Best wishes.

Thanks Rily. The consultant did say when pushed that it looks low grade but he won't know until results available. I guess that's better than saying it looks high grade. 

Thanks for your reply - it's interesting to hear you have felt in the dark too. Initially my husband had TURBT at one hospital but was referred on for what he was told would be a second at a Uni Hospital. When he went for the pre op chat, the consultant said 'you have been referred for a cystectomy and we need to discuss if you want neo bladder etc'. This was such a big shock that my husband just shut down and said he wanted to keep his bladder so they agreed to try a second TURBT and managed to remove all the tumour. He was then referred back for BCG to the original hospital. I wasn't allowed at any of the meetings due to Covid but would have liked to understand why they recommended cystectomy and risks of just having BCG. He only had 12 of 15 BCG and again nothing has been said about if this is putting him at risk. I also always wondered why he never had the chemo installation after the TURBT. We were given the booklet too and that been it really. I can't really advise him on things like whether to retire early as I don't know what the prognosis is. Wishing you the very best with your treatment. 

Thanks for your reply. Yes, I think if it is high grade they will recommend cystectomy and I think he will have to consider going ahead. I hadn't thought about this being muscle invasive as he is on 3 monthly cystoscopies and has gone 2 years without recurrence. The nurse specialist did say it was a very minor setback when she spotted it so I hope she wasn't completely wrong. 

It always is the risk with BC that it will recur & progress, but I don't think all hosp are good at explaining the possible scenarios. I chose RC partly so I could get on with life without fear of more interruption & not risk needing chemo as well as surgery at a later date. I was keen to get back to work - I started a phased return at 3 months post op. It's only when you get to stage 4 & metastases that the prospects are bleak - otherwise I think best to carry on as normally as possible. 

You never know, it may turn out to be a low grade recurrence & then more BCG is certainly an option. Best wishes.

I was diagnosed following a gp appointment who insisted & arranged for multiple diagnostic scans etc in July 2020, following which the NHS arranged surgery through the private hospital where I live. This was at the height of the covid breakout. My local nhs trust/team arranged this & I was in within 3 weeks. They were brilliant as is my surgeon & the urology department. There are so many treatment options available now. Things aren’t the same though as my immune system is suppressed but they have saved plus extended my life so far. They don’t always get the credit they deserve & that includes my Macmillan team who have been wonderful 

My team have been great too, but Catfan gave the impression that info has been a bit lacking in their case.

We found out 2 days ago my husband has aggressive cancer involving the 2nd layer but not muscles. Its almost 6 months to get to this point after he passed pure blood. I just can't get my head round the delays. After his referral he had a cystoscopy, told to drink more and repeat in 4 weeks  even though we said he drinks 2 litre+. No mention of possible cancer.  5 weeks later 2nd cystoscopy, no mention of cancer but put forward for biopsy. Told 3 weeks later G3T1 CIS and for 2nd biopsy. Delayed, due to more urgent cases needing his place. When he went for 2nd biopsy we now know to be TURBT surgeon said it might not even be cancer, so when we went for results 2 days ago, told same grading, so we asked why the surgeon had said it might not be cancer. That surgeon by coincidence came into the clinic while we were there. He said he meant there may not be cancer in the tissue he removed. He basically said he was stupid if he thought he meant no cancer at all, as the biopsy had shown cancer. I said I knew that as a nurse and he knew it as a surgeon but my husband had never heard of a biopsy and thought it was a provisional result that could be wrong. There was absolutely no treatment options discussed other than BCG. He as seen 6 surgeons in 2 hospitals that belong to the same trust. At the moment I feel angry, both with all the delays, the lack of information, and being told 'as a consultant its my job to give out results, if we wanted to complain, go to PALS. His arrogance was unbelievable and he really triggered me, and I told him at some point he had a duty of care to take accountability, to discuss treatment options and make sure in a big team all consultants were singing from the same hymn sheet. Its all seemed an absolute farce from day 1. My husband isn't at all phased about having a cystectomy, but it's never even been mentioned