Worry

So sad to hear this worry is blighting your Christmas. Hopefully they will be scheduling more tests to get a diagnosis for you. I’m female and no similar experience but sympathise with your situation. We are all inclined to fear the worst - despite that not making any difference to the outcome. I hope you can shelve your concerns a little to enjoy the season with family/friends. Very best wishes. 

Hi Tim79 . I had similar RT treatment as you. Several months down the line had a few bleeds. I was told that one of the long term effects of RT is that blood vessels tend to rise to the surface and occasionally pop. Similar to varicose veins. I was advised to drink plenty of water to flush things out, but obviously if things persist  get back for further investigation. Best wishes.

Sorry to hesr you have had all that deal with. Wow that seems like a lot for a grade 2 diagnosis, was it muscle invasive or not? Was there any spread to anywhere else? 

Sounds like a radical plan giving full on chemo and suggesting bladder removal etc as possible next steps. 

Blood in urine can happen for many reasons and sometimes happen for no real reason but obviously is a sign of cancer in many cases. My friend has blood every now and then and he's been checked several times when it happens and the docs can find no reason for it. 

As for the rest again I can't really hellp re the leakage etc much. 

I know ever case is different and different surgeons choose different paths for different patients. But I also had grade 2 and NMI but have only had a 6 week coirse of Mitomycin that didn't work and now having ethrubacin over 6 weeks in Jan to try and stop the tumours coming back. If that doesn't work then it's a meeting at Sheffield with a special it's team to discuss further surgical intervention. I also have to have 3 monthly camera check ups at present for the rest of my life for the foreseeable unless they decide to scale that back in time if clear check ups. 

My symptoms started May 24 and still in no better position than I was really with keep having recurrences on and off. 

I hope they can get the bottom of your problems and resolve them for you, have you spike to your CNS and surgeons about these continued problems and or your doctors surgery? Keep pressing for help if you need it. 

Thanks Simon,  yes was muscle invasive mine but had not spread 

Thanks rily hopefully it's just long term effect from radiotherapy,  just bothers me that it started 4 months after radiotherapy finished 

That probably explains the more drastic measures then compared to my experience. Sorry I can't really help much but I hope things do get resolved for you. 

Hi all ,just to update on boxing day got a call that my last urine sample from dec 9th showed irregular cells,  so they booked me for a rigid cistoscopy 13th January. Unfortunately they found another cancer tumor in the bladder so performed turbt  - have to now wait for biopsies to see how aggressive this new tumor was , but as my last was muscle invasive they suggest next stage is likely bladder removal surgery . 2 week wait now for result and doctors to have meeting to agree way forward. 

So sorry to hear this after all you have been through but you beat it and stayed clear for a while so I have everything crossed for you again. As for bladder removal it's a good option and many live full lives with either an ileal conduit and bags or go on to have a further operation to have a bladder reconstruction. So there are options for you but tbh I'd take it myself and probably leave it at the ileal conduit tbh but that's a personal choice really. Yes it will have it's hurdles but has to be the better option than leaving it to get worse.

Man you have been through the ringer that's for sure, makes me realise how lucky I've been so far if I'm honest.

Can't really think of anything more helpful but I know you've got this, you have already been through a lot and you can do this I have full faith in you. 

I know that wasn't the news you wanted to hear, but at least there is the option of more treatment in the form of surgery. As you will know, plenty of us have been through that. Often the anticipation is far worse than the actual experience. Best wishes.

Hi Tim79,Sorry to hear this.If you do need bladder removal if you can get yourself as fit as possible beforehand that will help.Everyone on here will support you through.I had the surgery over 6 years ago and it wasn’t as bad as I expected.Best wishes Jane