An Introduction...

Hello Nickfreckle

Sorry to hear you've been diagnosed so young. I was in hospital with several 40 somethings so we know this awful disease is dropping down the generations.

Once the grade and stage of your tumour(s) are known we can advise you further. In your position, I would seek a second opinion and consider all the bladder preserving treatment options including immunotherapy before cystectomy if that is possible.

I wish you good fortune.

CB

Hi and welcome to the group, although sorry you find yourself here. Sorry to hear about your father, but bear in mind everyone's prognosis is different. It is early days for you and we understand how you must be feeling as we have all been there. Bladder cancer was once regarded as an older person's disease, but we are seeing more younger people with it. Everything depends on the results of your biopsy. This will determine the next course of action. It is a one step at a time process. You may be sent for a CT scan and this is usually a precautionary step and to give them another part of the picture. Once a treatment plan is put in place, things become clearer and you have something positive to focus on. Feel free to ask any questions. Best wishes.

Thanks for the two posts above.

I'm having a CT scan on Tuesday coming, and hopefully it shouldn't be too long before I get a clearer picture as to what is going on.

Obviously, I hope it's been caught early, but my worry is the amount of tumours I had, which I hazard a guess wouldn't normally be the case if it was early? I don't know.

I noticed blood in my urine towards the beginning of last year, but foolishly did nothing about it, as it was only a couple of times and thought it may have been a result of dehydration and such like.

It cleared up for a while, until the spring, when I noticed it again, but I made sure that I drank more fluids, which I would imagine started masking it. Come May/June time, it started to get worse, and again, foolishly self-diagnosed that it was again de-hydration - I'm a bus driver and don't get much opportunity to drink. 

After a bit of nagging from the wife, I went to the GP in June and gave a urine sample, which showed no blood or anything, so I thought that was that. 

Throughout the summer, my urine was getting darker and darker, but in light of my previous test coming back clear, along with knowing I didn't really take much fluid on whilst at work, I blamed the hot weather. 

Things appeared to be ok again until the beginning of December, when at work I used the toilet and stopped mid-stream - only for there to be a pop, followed by a clot and a lot of blood, at which point I went sick on duty straight away, and went to my GP that afternoon, and they referred me straight away. 

it's all kind of gone a million miles an hour since then, and it doesn't feel like my feet have really touched the ground since - but what is worrying me, is that it's been almost a year since I had what I now know were probably the first signs. 

Hi nickfreckle. You are not the first one to ignore symptoms and probably won't be the last. In some cases, this thing does not show any symptoms. Whatever treatment path you go along, things do seem to move slowly and the waiting between treatments, tests and appointments can be frustrating. There is usually someone around on here if you need to ask anything or just to get things off your chest. Best wishes.

Hi nickfreckle, sorry you had to join us, don’t beat your self up about ignoring the blood, I can see why you did. Hopefully the advert on TV for blood in the pee may alert more people to go see the doctor.  Until you get your pathology results you won’t know anything and will be a worrying time, in my case that took two weeks of worry. Also you may have a bit more blood in about two weeks or so, it’s just the scabs healing/coming away and to be expected. Ask away if there’s anything you want to know, some one will be around. Good luck 

^^^^ Thanks for the advice Sue. 

I knew that having a pee was going to be uncomfortable for a few days, but blimey, never known anything like it!!! 

I had my symptons for 2 and half years before I went to the doctor mine was still low grade I have been having treatment for 4 years now and it does keep returning but I go every 3 months for check ups to keep on top of it try not to worry hope all goes well for you xxx

Hiya again. Almost a week on, and I don't seem to be having any let up on the pain and uncomfortableness when I go for a wee - and it's feeling like I need to go every half hour, sometimes less, and not much is coming out. 

I'm fine first thing in the morning, and having proper wees, although they're still fairly painful, but not enough for me to start yodelling like the ones do as the day wears on. 

I am drinking plenty too. Is this normal?

As an aside, I'm still getting lower left back pain, which is quite worrying.  

Hi nickfreckle. Some people do suffer worse and longer than others, but it is always wise to check with your medics. Do you have a CNS to contact ? If not there should be a phone number to call on your discharge papers. It is also an idea to drop a sample at your GPs to rule out any infection. Best wishes.

Yes, I do have a nurse, but I don't want to bother her over something that in the grand scheme of things is pretty trivial. If somebody had come on and said it wasn't normal, then obviously I would get in touch.

I'm wondering if it's taking a while with me as I had a couple of tumours removed from the neck of my urethra, and that's got to smart a bit.