Received results post TURBT

Hi, this is a common dilemma. You need to weigh up how much you want to gamble (with your life) vs keeping bladder, alongside your personal circumstances & opinions. The problem is not knowing if BCG will be effective or not. 

I was TaG3 & told radiotherapy not appropriate for that - I get the idea that there needs to be some cancer cells for it to work on. Not sure about the squamous element, but I believe this is more aggressive & prone to invasion. What you need to know is that a recurrence could well be muscle invasive, meaning likely chemo anyway, plus surgery or radiotherapy. There is a risk, however small, that a recurrence can quickly jump to metastasise & be incurable. 

I chose surgery for best chance of cure & to be able to get on with my life without worry. That was 12 years ago. Happy to answer any questions (I have neo).

Hi Tortoise,The trouble with squamous cell is that it is aggressive.It doesn’t respond that well to chemo or radiotherapy.I had Squamous cell and it started as a solid tumour that was causing an obstruction.At first I was told that it didn’t look as if it had gone too deep into the muscle may be T2 at worst.They removed as much of the tumour as they could during a TURBT.Biopsies showed it was T3b G 3 and I had bladder removal soon afterwards.That was in Sept 2019 and I’m cancer free.I hope this helps.Best wishes Jane 

Its the "possibility" of squamous cell differentiation with transitional cell carcinoma that has me puzzled. Sounds like its not definitive, and although I am normally good at working within all shades of grey, I would prefer something a little more concrete before I make what will be a life changing decision, either way. Waiting for appointment for second TURBT, and hopefully they will be able to provide greater clarity following this and further pathology.

Winkers - Did you have 1 or more TURBT procedures before deciding? just wondering if the second TURBT I have coming up is purely because I asked to consider BCG as the treatment option to preserve the bladder, though in reality I am ready to go with RC and a stoma if necessary.

Hi Tortoise . A follow up TURBT is standard practice in most cases. It is a mopping up operation to make sure they have got what they can. Further biopsies also gives them a more accurate diagnosis of what they are dealing with. Not usually as severe as the first one. Best wishes.

Hi Tortoise,I only had one turbt in June 2019,diagnosed with cancer July 3,saw the surgeon the following month and was placed on the urgent list for cystectomy.I had that the following month.It was all very quick really but I wasn’t well at all.Hopefully a second TURBT will provide you with some clarity.I didn’t have to make a decision really,just told I was in a serious situation and needed bladder removal.I had suffered from a chronic bladder disease for 34 yrs so my bladder was very diseased prior to cancer.I have a stoma but cope well with it and lead a full life.I hope you get some more information soon.Best wishes Jane 

If I decide to go with BCG post 2nd TURBT, how long after the TURBT does this normally start? Getting concerns regarding the long time from diagnosis to starting treatment.

Also, how long to wait for Cystectomy (with stoma) if I go that way would be worth knowing. 

Hi Tortoise . They need to let your bladder heal after TURBT, so about 6 weeks before BCG starts. When you get the results of your follow up TURBT you will be in a better position of what is best for you. Best wishes.

We're all keen to get on with treatment quickly, but it's not always as urgent as we think. If you opt for surgery, depends on hosp. From my first TURBT at end of April 2011, was beginning of Sep 2011 when I had surgery. That was with repeat TURBT, other tests & consultations in between. They did say if it was more urgent (eg muscle invasive) I would probably not have had the choice of neo/stoma but would have had surgery sooner.

Hi Tortoise,You should know more once the second TURBT results are back.It’s horrible waiting and being in limbo.If you are going for cystectomy getting as fit as you can will help.Best wishes Jane