Just had first cystoscopy

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Hello to everyone and thank you for letting me join. 

Female 76 years old. Live alone.

Just had my first cystoscopy and it was confirmed that I had bladder cancer. 

I have never had blood in my urine and my urine sample was clear. My initial symptom was a pain in the left side of my abdomen, ongoing since around spring/mid summer last year, and which was assumed as diverticulitis. I had a colonoscopy which was clear. Pain continued and was more general and cramping. Luckily I managed to get an appointment with a good locum doctor who sent me for an ultrasound which showed an anomaly in my bladder. Although I had had a more frequent need to pee I just assumed it was an "age" thing!

The "surgeon" doing the cystoscopy showed me the cancer on the screen, he also threw in an aside of "oh there are multiples" which was the thing that has absolutely shocked me! Now I know I should have probed him with questions about that, but you don't do you, cos there is so much going and people talking to you etc,  that your mind only thinks in a calm rational way when you get home! 

I go for a CT scan in a week and a TURBT after that on 18th Feb.

The fear of the unknown as always rears it's ugly head and just wondered if anybody else had a "multiple tumour" diagnosis from their first cystoscopy?  

All experiences gratefully received to try and help me to settle down. Open mouth

Thank you for reading.

  • Hello and welcome to the group, although I am sure you would have never thought you would ever find yourself here. We know how you must be feeling at the moment. Firstly, bladder cancer can be treated successfully one way or another. Bladder cancer doesn't always present obvious symptoms, so good to know it has been found. Multiple tumours are common, so try not to worry too much about that. CT scans are standard, just to rule anything else out and give them a better picture of what they are dealing with. A positive is you have a date for your TURBT. Some people have had to wait months because of the backlog. The op itself is fairly straightforward. You won't know anything about it. Possibly done in day surgery, but prepare for an overnight. After effect is normally some discomfort for a few days when peeing. The surgeon may give you an idea of the outcome, but biopsies will be sent away for analysis and there will be a few weeks wait for results. The results determine the next step. Please feel free to ask any questions or just chat. Lots of support here. Best wishes.

    Best wishes to All,   rily.

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  • Hi mole35,Welcome to this friendly supportive group.Best wishes Jane

  • Hi mole35, My husband had at 73 four years ago, a complete bladder that looked as he described it like an inside out cauliflower. Two TURBTs 6 BCG some Mitomycin and a heck of a lot of normal busy life on, he has got a probable recurrence listed for biopsy soon. So this really can be something you live with and  get on with your life most of the time even after having multiple tumours.

    Denby

  • thank you for your very informative post. That was a relief about multiple tumours being common. xxx

  • thank you Jane for your kind thoughts x

  • yes I certainly agree with carrying on as normal as much as you can. It's the initial shock which can floor you a bit. Knowledge is power but there can be some quite insignificant things which can give you the heebie-jeebies when you are faced with the unknown. Thanks for telling me your husband's experience and hope things go well for him x

  • It is certainly scary when faced with an unexpected diagnosis like that, with all the tests that follow. But good that the problem has been detected & is being addressed. We are all familiar with the anxious wait for results. Once those are back, you should have an opportunity to talk to the consultant who will explain the treatment options suitable for you. 

    As regards the multiple, size & quantity are not indicative of seriousness. My brother has multiple low grade growths over several years & was eventually discharged. I had one small, high grade tumour & took a different path. 

    Hope the TURBT goes well, take it easy for a couple of weeks afterwards & drink plenty. Best wishes.

  • Thanks for the info. Your second paragraph was reassuring in relation to my situation. Will update as things progress. Glad to be part of this community xx