Diagnosis without cystoscopy

Please do not delay having a cystoscopy, a urine test will tell if you have blood in your urine, I have been through the whole thing and a cystoscopy is uncomfortable but it is the only way, remember if you have got cancer it is growing all the time. I have had my bladder removed and replaced by a bit of small bowel. If you need to talk get back to me  

I honestly don't feel I can have a cystoscopy...I've been beating myself up about it for weeks. I refused when the gp wanted to send me for one but agreed to an ultrasound instead. Now I'm waiting for a referral to a Urologist and I know they'll want to do a cystoscopy.

It's way more than worrying about it being uncomfortable or embarrassing...I have a huge fight or flight reflex...I cannot make myself consent to this and I'm at a total loss what to do.

Hi, I know exactly what is going through your head it is bad enough being told that you have cancer let alone all of the procedures that follow, but if it is bladder cancer you will soon get used to everything, just leave your dignity at the door, everyone in urology will help you with your worries, just tell them about you fears and they will spend enough time with you to put you at ease. I had a few cystoscopy`s only one was while I was awake so hopefully you can have a anaesthetic. If they find something they may remove it at the same time. The thing that was annoying for me was people saying think positive! It really got on my wick, it is what it is and that’s that.

I hope that you can find it in you to go through with the cystoscopy because at the end of the day it may save your life. I hated every moment of my treatment but I am still here to moan about it. I don’t know how old you are and that can be a factor of how they proceed, I had my bladder removed and a new one made from a part of my small bowel and now I can pee as normal so there is light at the end of the tunnel.

I know all of the staff at the Leicester general urology unit by name and they are fantastic, I can’t praise them enough and the same goes for my consultant Mr Kockleburgh, I look on him as my saviour,

Thing may not be as bad as you think, I could see blood in my urine, can you? Without help things will get worse so grab the bull by the horns, bite the bullet ext and go for it!

I was diagnosed with bladder cancer after seeing a large amount of blood in my urine one night. I was given an appointment for three tests: ultrasound, x ray and cystoscopy. After the first two tests, I went to the cystoscopy unit expecting to have the last test done, only to be met by a doctor who told me that the first two tests had confirmed there was cancer, so there was no need to have the cystoscopy to confirm what he already knew.

Since then I have had two operations to remove the growth. Normally this is done under a general anaesthetic, but because of other medication I take, they felt it would be safer for me to have local anaesthetic. Both times I had a spinal injection, similar to what is given to women having caearians. So on both occasions I  felt nothing as they did a cystscopy and removed the growth at the same time.

No doubt in future I will have to have a cystoscopy to check how the operation went and whether the cancer has come back. Like you, I am not looking forward to that. I did ask whether it can be done under anaesthetic just for checking. In theory it could, but in practice it would mean staying in hospital and occupying  a bed while waiting for the anaesthetic to wear off. As the procedure only takes a short time, I suppose they don't want beds clogged up with people who have only had a diagnostic cystoscopy.

Thanks again for your reply, I know I must sound like a baby but I have such strong feelings about procedures like cystoscopies....I'm a 34 year old woman, I have wondered about being asleep for it but have such panic about the whole idea I'm not even sure I could go to an appointment knowing a cystoscopy would be done. Right now I'm hoping once I meet the urologist they will help put me at ease a little...maybe there's even some medication I could take to calm me a bit? I'm on anti anxiety meds now but they're not doing anything.

I had 2 urine infections last year where blood was visible, then in January this year had blood in my urine again for 2 days but when it was tested I was told it wasn't an infection. There is constantly blood in my urine now but it's not visible. I'm also getting discomfort in the sides of my tummy and just up under my ribs.

Hi first78, I really cant emphasise how important it is to be sure of what you have got, hopefully its just an infection, my doctor told me that I had blood in my water but it was not visible to me, but he told me it was my age and then its normal! Then told me that I had a cyst on my kidney, well if I had my way he would be put up against a wall and shot and I would pull the trigger, I have since changed doctors.  Don’t delay in having every test possible the earlier it is caught the better. I wish that I had known that I had cancer at your stage thing may have been treated in a different way. You are young to have bladder cancer I was told that I was young to have it at 53, just go in to urology, take a friend with you and try to make light of it, the staff have seen everything before and nothing surprises them.  It worried me when I first started to go to urology, but now it doesn’t bother to have my bits on display, please please have the cystoscopy it will put your mind at rest it is all over quickly and a nurse will hold your hand for you if you want I know it made it easier for me. Ring Macmillan and talk to them see if that helps, don’t forget everyone is on your side, the treatments are for your own good but its hard to think that at the time, I got to the stage when I thought that I would not have any more test but still went ahead with them, before you get an appointment ring the urology unit and ask if you can go in and talk to them, really its not as bad as you think. 

SB

I've been told it's not an infection. GP initially wanted to refer to to a nephrologist and said it may be kidney cancer but then changed her mind and decided a urologist was better when my blood tests came back clear.

My partner will be coming with me, I wouldn't even go to the appointment if it wasn't for her support. The issue I have about the cystoscopy honestly isn't about whether the drs have seen it all before. To me it's a violation of my body and my personal space. I couldn't let anyone touch me, I would hit out and defend myself as that sort of intrusion is more than I can deal with.

I understand I need to have tests to find out what is wrong, and believe me I want to be diagnosed and treated. I feel so pathetic sometimes that this is such a huge issue for me, but I can't help how I feel. I don't feel that anyone other than my partner understands how big a deal this cystoscopy issue is to me and I don't know how else to put in into words how I feel.

HI First78,

I have just read your posts and replies from people who have all gone through the mill which is bladder cancer in all its forms of severity, as a bladder cancer patient myself and having gone through all the diagnostics and a TURBT operation followed by 4 further checkup cystoscopy's, i can only advise you that this is not something to be played with, if left alone to manifest itself even while you make up your mind for a few months or longer you will face far worse, my own father left it for too long before seeking help for what reasons we will never know, he died in the end, now i have it, the same type too! but we think for the moment it seems to be halted due to the expert diagnostic tests and treatment i have had from my local hospital here in Eastbourne, while for me it was a huge emmbarrasment to go through and as you quite rightly say 'an invasion of my most private parts!' without it i would no longer be here to be writing this, so,... its like i got my life back, after having 5 months off from work i am now back working and doing all the things i did previously, since then i have had 3 further cystoscopy's (all were clear) so the 5 year treatment plan now only has three and a half years left to run before i am deemed as cured, and i feel quite good.

I imagine for someone to have such severe reaction to the thought of this proceedure, that maybe you have other demons going through your mind, may i be bold enough to suggest that you put these demons to bed once and for all by whatever means, because i can assure you a cystoscopy although mildly uncomfortable is a small price to pay for your life, please dont treat this like its a common cold or virus as it wont go away on its own accord, i have personally lost so many friends and family to this decease it makes me so sad to even think about it,

If i can be of any help please get in touch, you only get one chance in this life, and from the sound of it you have the support and love of a partner, so you are half way there. (i only had a cat!)

Pauli..........

Went to the haematuria clinic last week, had another ultrasound which came back clear and am going back tomorrow for the urine test results. The nurse I saw also wanted to book me in to have a cystoscopy which I still refused....why won't people understand that I CANNOT have this done??? It's distressing me so much, I can't take much more. I told the nurse  would be willing to try and have the procedure under sedation but was told that sedation is not offered. Feeling at the end of my tether...sick of no one listening to me.

Hi first78,

You sound really distressed and upset about this - I can see that this is clearly extremely difficult for you. You say that no one is listening to you, which made me think you might benefit from calling our Macmillan Support Line. They are available to listen and support you if you need to talk at length about your fears. They can also put you through to specialist nurses if you have any medical questions. It's freephone 0808 808 00 00 (Mon-Fri, 9am-8pm). I hope that this is helpful to you.