Newly diagnosed and waiting for results

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I am a 63 year old male, and had a TURBT operation last week to remove 3 small (<10mm) tumours from the bladder. The tumours appeared like 3 pimples (smooth surface) with a few capillaries on the surface wafting in the fluid.

I'm in that dreaded waiting period between the Op and the outpatients meeting in a couple of weeks, and worrying a little about the outcome.

So far, I have had 3 tumours removed, but without Mitomycin C as "the tissue was very red). On reading the discharge notes it says "no Mitomycin as multifocal and could be deep tumour". The surgeon did say that they did not identify anything unusual elsewhere in the urinary tract from the CT scan.

To someone who has never had surgery before, and only one previous hospital admission ~25 years ago (kidney stone), this is quite concerning. Any comment on this would be much appreciated. In addition, what are the more relevant questions once the results are available, which I am hoping will be available within the next week, i.e. a week before the outpatient appointment.

  • Hi  and welcome to the group. Your story will be familiar to many of us. The early days of uncertainty and not knowing can be the worst. Once a treatment plan is in place, things tend to get easier as you have something positive to focus on. It's not unusual to not have MMC, sometimes it is deemed unsuitable. You should be given a stage and grade of the cancer. This determines the next step. It is also not unusual to have a follow up TURBT to mop up any rogue cells and give a more accurate diagnosis. I was also 63 when diagnosed with muscle invasive bc. I am now 72 and been golfing this morning. Lots of experience here so feel free to ask anything. Best wishes

    Best wishes to All,   rily.

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  • Hi Tortoise,Welcome to this friendly group,I hope you will find it helpful.This stage does feel very daunting but once you get results and a treatment plan It does feel better.I kept a notebook handy to jot down questions for the consultant and took it with me to write down the answers.I took my sister in with me and she asked questions too and an extra pair of ears is always useful.It’s easy to forget information.There is plenty of advice in this group so do ask questions there is usually someone with the relevant experience to answer.Best wishes Jane 

  • You will probably be given the path lab results at the OP appt, with a discussion as to what next. I found when I had a list of questions, I would be floored with a statement from the consultant that I didn't expect, which completely changed my focus. Rather than specifics, think about asking what next, what do you recommend, why, what are the pros & cons, risks & benefits. You can probably expect more tests along the way eg second TURBT, kidney function, to give them a fuller picture, before they recommend a treatment plan or before one is implemented. You may be given options to choose between. 

    It is all a bit daunting, but once you have a clearer road ahead, gets a bit easier to deal with. Best wishes.

  • Was expecting my Outpatients appointment at 3 weeks, as per discharge sheet. I know they had MDT meeting in time to see me at 3 weeks, but they have pushed it to four. Not sure what to think about this? Also had a call on Saturday to "check how I was post surgery", but this was 3.5 weeks post TURBT, which seems like a long time for first contact post surgery. Just hope they are not trying to prioritise me out further, which would be a problem for me.

    Re the OP appointment, as they removed 3 tumours, should I expect to be told the grade and type for each one?

  • Also noted that over the last 3 days, I have not been able to get a good nights sleep .. after a couple of weeks of only needing to go to the toilet once in the night post TURBT, I needed to empty bladder every 2 hours and last night every hour. I don't have a contact with the urology team to contact and discuss and I wonder what had changed?

    Waiting for OP appointment is starting to get to me

  • Hi Tortoise,Sorry you are not having much sleep.It’s always worth getting your urine tested if your frequency has increased.Urine infections are not uncommon after Cystoscopy /TURBT.They will look at all the tumours and you will be told the grade etc The appointments appear to be all over the place since the pandemic so I wouldn’t read too much into a slight delay.The waiting is never easy,I used to keep as busy as possible.Best wishes Jane 

  • Also they may still be waiting for all the histology reports back from the lab.Any hold ups in departments can make a difference to appt dates