Awaiting cystoscopy

Hi Missmoofdb97e and welcome to the group although sorry to hear of your concerns. We know how anxious the early days of uncertainty and not knowing can be. Bladder cancer can be treated successfully if it does turn out to be that. A flexible cystoscopy is a fairly quick procedure. Usually painless but maybe uncomfortable. You will be able to see for yourself on screen what is going on and the doctor will talk you through it. If anything untoward is seen you will go on to further investigation. Stay away from google as there is lots of misinformation out there. Many of us have been through it or going through treatment and there is usually someone here to answer any questions. Best wishes

Thankyou for your reply, 

My doctor doesn’t seem too concerned but I failed to mention that I had a CT scan on 6 September and that came back clear but I’m wondering could I have another stone be it kidney or bladder from the pain I’ve been experiencing after urination but not all the time. I suffer greatly with health anxiety and it’s affecting my eating and sleeping.

Thankyou for your reply x 

Hi, I'm female and have had a baby as well as bladder cancer. Both put quite a strain on one's body.

My advice is don't Google any more. It isn't long now to your cystoscopy (and be glad you're female is it's usually much less uncomfortable for us - shorter distance to travel).

Obviously we can't say what you have got but you have done the right thing getting it checked out, you're in the system and once they look inside they'll tell you what needs to happen next.

The one thing I can say with absolute certainty is that worry does not cure anything, especially cancer. 

Even if you do have a serious problem there are treatments that work. And we're all living proof of it. Check out our profiles and see that some of us were treated quite a long time ago.

I hope that I have persuaded you to put all this on the back burner for a few days and play with the children or distract yourself somehow. 

I had a teacher once who put it very well - don't waste time 'awfulizing' wait until you really have something concrete to deal with. You'll need all your energy then.

She's quite right.

With love,

Latestart

Hi Latestart, 

Thankyou for your reply I’m trying to avoid being on my phone. I’m just glad that my cystoscopy isn’t that far away now I’ve had enough of not sleeping or eating properly and asking for reassurance every 5 minutes! I am just hoping that it’s nothing and I can carry on with my life. It’s been a really tough couple of months with the unknown. 

I am sorry to hear that you had this disease and to have had a baby at the same time. It’s scary when you have such young children. 

Hugs x 

Sorry but my 'baby' is now 45 and my stoma is nearly 3! I should have been clearer.

I just meant I know how having a baby can also affect your body in ways not dissimilar to having a big cancer op.

I hope you can make yourself calmer and that everything turns out well for you and your family.

All the best,

Latestart x

Update: 

I haven’t had my appt yet as it’s next Tuesday, I just need some advice on how to cope. The blood in my urine has since returned and been here for 4 days but I don’t understand how my urine is clear in the morning then the blood starts about the same time everyday after I’ve been up with my children. I also experience spotting from being on the pill which only appears when I go to the toilet and when the blood is there that’s when I’m seeing brown/red urine. 
I’m reluctant to go back to the docs as they will only say wait for the appt. 

I am struggling to cope with the anxiety I can’t eat properly or sleep and I wake up with a pounding heart every morning. I feel like a fraud as I haven’t even had a diagnosis yet and I’m fretting but I just wondered if anyone had a bit of advice for me.

Missmoo xx

Hi Missmoo,

I'm sorry you are still fretting. And there isn't much more I can add to what I said above - deep breaths and meditation can help with anxiety plus walking always used to help me.when I was your age.

On the blood, perhaps it isn't surprising to see it as you haven't had any treatment yet since the original blood that prompted you to start all of this. On the timing, if you've been asleep you haven't been moving. Once you are up and dealing with house and children, gravity probably leads it downwards so you see it.

At the cystoscopy you may be told what they find or you may not. Each hospital and Urology dept seems to have its own way of doing things.

For example during the cystoscopy they showed me something that looked like a wart but didn't say anything about it.

After the cystoscopy I was called for an operation called a Turbt which is where they take samples and after which they may say what they think, and start treating it, or they may not say anything until they get the results from pathology, have an internal cross-specialism meeting (where they discuss all current cases) and then call you in to be told what it is and what treatment they think you need.

That, is probably the time to start worrying. But personally I decided not to and to get on with what I needed to do to get rid of my cancer and support my family. 

You are in the system and each stage takes time. The doctors have seen it all before and will help you when they know what is happening.

All we can do at the moment  is wish you good luck and say you are among friends here.

All the best,

Latestart

Thanks Latestart :) 

can I ask how old you were when you were diagnosed? (If not too personal) 

Going on long drives helps me at the moment but I can’t be in the car all the time haha! I’m trying to think positively in the fact it is treatable. It’s just strange how it’s all come about months after having a c section. 

thankyou for being kind and understanding 

Missmoo x 

I was 69 on diagnosis but 22 in 1974 when my mother (63) was diagnosed with untreatable bladder cancer which she had ignored for a long time. She died soon afterwards.

Most of us on here are older.

All the best,

Latestart x

Thankyou for letting me know, I’m sorry about your Mum that must have been awful for you being so young. I’ve seen stories of people going nearly 10 years before they are diagnosed that’s scary! 

Thankyou for your reply it’s much appreciated :)