New to here and Very Anxious

Hi there, whilst you are understandably very anxious please be reassured that once you have the cystoscopy - which is a quick and not really painful ( for us ladies anyway). They will feed back on what they observe,  next step will be what is called a TURBT. This will be under general anesthesia and is usually as a day patient. They will remove what they can of the tumour ( often all) and take biopsies to ascertain which layers of the bladder the tumour has reached. The vast majority are the very innermost layer only and thus contained to the bladder. The biopsy results will take 3-4 weeks usually. A program of treatment will have been discussed by the urology team. Trust me I was in a very anxious state at first but gradually realised you become part of a pathway and that gives reassurance. Bladder cancer though often reoccurs but you can go through more TURBTs and chemo or immunotherapy which is often directly into the bladder and thus not as scary as intravascular treatments.

You can check out my bio for my history,/treatment 

Best of luck

Jane

Thank you for providing a little clarity ... I am all over the place at present with what I have been reading.

This is standard process with all cystoscopies I am assuming - regardless of what is seen on imaging?  I did read that sometimes biopsies are taken during the cystoscopy but not sure if this varies between hospitals. The lady I spoke to this morning who rang to confirm my medical history seemed to think that I would be given results the same day but I may have misunderstood what she meant by results.

Needless to say I have understood that the very few benign lesions are uncovered in the bladder. Doesn't sound good.....

Hi SouthEastGirl . The way you are feeling will be familiar to many of us. The early days of uncertainty and not knowing can be scary. A flexible cystoscopy is a visual inspection. You can see for your self on the monitor if anything unusual is there. They may give you an idea but cannot confirm anything and some doctors can be non commital. If anything untoward is identified you should then referred for a TURBT procedure as described by Bicyclegirl above. One thing to remember is BC can be treated successfully. Many of us have been through it so feel free to ask anything. Best wishes.

Hi SouthEastGirl,

You've had some good info and advice and, like just about everyone on this forum at the start, you are anxious. What I would like to convince you of is that once you have had the  cystoscopy and a CT your Urologists will have something to work with. But until then nobody knows what is going on in your bladder. So worrying about it it is not very helpful.

As others have said the next step is a TURBT and that will give the medics something  physical to work with. And that's dependent on the CT results - which can take several weeks to be produced (shortage of radiologists) and the report from pathology on your tissue samples. I'm in the South East too so am now well used to this. By the way, my Urologist didn't tell me anything right after the TURBT, that came in a later meeting (see below).

After the results are through there is usually a multi-disciplinary team (MDT) meeting where the Urologists, radiologists and other specialists review your case (amongst others) to decide on appropriate treatment.

And some days after that you get to talk to the medics. That's the point when you start to undertstand properly what is going on inside you and what's to be done about it.

And please be aware that there are treatments for whatever it is and we are all beneficiaries of the expertise and knowledge they have. 

So please try not to Google at random, most of it will not be relevant to you. Please wait until you get the feedback that relates to you. And even then there are expert and effective resources to help you:

Macmillain has good info on bladder cancer, Cancer Research and NHS websites ditto. 

In eny event let me tell you my mantra - Worry Does Not Cure Cancer (or anything else). It has kept me going through diagnosis, treatment and post op reviews for 4 years.

All the best,

Latestart

(A post-menopausal female who did have bladder cancer and who has been living a good life during and since - click on my name and you can read my bio - and same for others.)

Thank you everyone for your advice and support - and yes you are quite right LateStart in that worry doesn't cure anything. Just my nature unfortunately in that I have to worry myself sick before I can deal with stuff - if I don't then something always goes wrong....

I realise that most medical information given on public media  is standardized  and generic - but it is all so doom laden and worst case scenario and can frighten the life out of one....and we have all done it in moments of weakness and anxiety looking for potential answers. The print-out of the TVS result from the Gynaecology department that arrived in the post yesterday didn't even have a covering letter with it and once I had read through it I went into overdrive ... hence my current state.

That's why forums like this are so important - the kind of advice and support you can get here is more welcome than non-committal medical commentary.

Sounds very similar to my story. I was fast track referred for a suspect gynae issue post menopause, but ultrasound picked up a bladder problem instead. In my case I was lucky that they were able to do cystoscopy same day - all a bit of a whirlwind. When you have the cystoscopy, they may or may not say much (you will probably be able to see the scan on a screen while they do it), but unless they are certain is nothing of consequence, will most likely book you for a TURBT (day surgery under GA). The CT scan is standard, just to give the medics a full picture of what is going on. 

We are all familiar with the anxious wait for results and to start treatment. Be prepared that they may yet want other tests (including a second TURBT) to fully assess the situation and advise of best treatment, or treatment options. Depending on stage and grade, there are different recommendations and options, so sometimes difficult choices to be made. There is usually someone here who has experience of whatever is suggested. 

Hang on to the fact that whatever it is has been picked up and will be addressed - as so many of us are here to demonstrate, BC is very treatable. Feel free to ask any questions here, or just come and chat.

Hi

It us awful waiting for the results of any investigation. 
I am going to say something ridiculous, in that you have been lucky to pick this up so early. 

Many women are investigated for menopausal/uterine symptoms when they have if fact, have bladder cancer. 

Blood in the urine, which I am sure you have not mentioned, is very often confused by both women and professionals as post menopausal bleeding. The incorrect track is gone down and we miss vital time to act before late symptoms present. 

Please keep in touch.

Best wishes. 

Well I went to the gynae to check on postmenopause bleeding as advised - the ultrasound showed up atrophy which probably caused it. Everything else checked out OK. But as far as I know there has been no blood in my urine up to this point (and I do periodically check when I go to the loo).

It was only when she was rooting around with the TVS that she spotted this 'growth' in my bladder and referred me to get it checked. As I said earlier on I have had none of the other indicatory symptoms associated with BC. If it is what I fear then it is as you say hopefully an early pick up.

1. Completely understand. I literally felt I couldn’t go home or speak to anyone after I got the diagnosis of bladder cancer at my cystoscopy. I could see the tumour. And the cheery doctor said it probably was! That scary day was 22 months ago and since then I’ve had regular scans and BCG treatment and I am presently well. You are at the scariest bit   It will get better. Sending love xx