Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Radiotherapy - late side effects

nickfreckle
Posted by

Yes, the mid-afternoon tiredness is the one that hits me now. Probably not ideal when you drive a bus for a living! Although, when I'm keeping active, like at work or days out with the family, it doesn't really affect me until I eventually get home and unwind, then I'm out like a light. 

Joe Soap
Posted by

I had 37 radiotherapy treatments too, but for prostate cancer.  My lot had the complication that, as I had just had a hip replaced, all the treatments had to be from one side only. I now have bladder cancer, and wonder whether the radiotherapy caused that. A urologist in the family says it was more likely to have been caused by passive smoking. I have never smoked myself.. What is the general opinion?

I cannot remember being told to have a full bladder for radiotherapy. I was asked to have a full bladder for ultrasound, but an empty one for BCG infusions.

Joe Soap
Denby
Posted by

Hi Joe, as I understand it any source of arsenic can trigger bladder cancer, as well as other factors. Tobacco smoke and various types of employment are often cited; again as I understand it some tap-water contains a certain amount of arsenic, perhaps due to the use of a contaminated additive used to dose the water with fluoride. I tiptoe because some consider this contentious. If concerned and you have spare time, you could do your own research on pure water at the national association etc on the internet.

Identifying causes may help with prevention for those who come after us, which would be satisfying, meantime all the best with your own treatment now 

Denby

Crustybladder
Posted by

Hi Joe

Re the passive smoking and bladder cancer matter, I'm convinced it's a cause. I've suggested to the Royal Marsden that research into this would be helpful.

I worked in the pub business for 40 years along with many others. Of my cohort of 20 regional managers at Allied Domecq, three of us have had bladder cancer. None of us smoked but we all worked around smoky pubs. 

All of us spent much time on the road travelling around our regions, mostly in towns and cities so poor air quality and particulates are also a likely cause.

What we do know is that no-one knows for sure, yet.

CB 

I may appear to be listening but in my head I'm boating. 

nickfreckle
Posted by

Well, finally having my CT tonight, and hopefully that can throw up some answers as to why I still have pain in rather random areas. Plus of course, comes the fretful wait for the results. 

Gulp. 

winkers60
Posted by

Best wishes for your scan and I hope that you get some answers soon.Love Jane XX

nickfreckle
Posted by

Thank you Jane. Now just playing the waiting game. CT wasn't half uncomfortable. For the first time having one, the 2nd part of it involved me laying on my front in what they called the superman position. Wasn't half a struggle getting up again.

nickfreckle
Posted by

Had a bit of a kick in the teeth this morning, which has left me with more questions than answers. In absolute dreadful agony today and last night, and decided I'd had enough and went to A&E. The doctor on duty did his best to find out what was going on, and contacted the radiology department to get my last CT Scan reported. 

It threw up no answers as to why I'm in this terrible pain, but he also said that they've not staged the cancer. "What cancer?" I asked, "Because last I was aware I was NSD" to which he replied rather nervously "I didn't see anything on the scan, but a copy of the report will be sent to your Urologist and your GP" and then made a swift exit. 

I was, and still am, totally bamboozled, and am now extremely worried. Why would he say they've not staged the cancer? And then why did he clam up? Is he not authorised to tell me what was found? 

Beside myself right now, and left thinking why did he say that, and what is actually going on? 

rily
Posted by

Hi Nick. Sorry to hear you are still in pain and not getting any answers. I can understand your frustration. It could be the A+E doctor does not know enough about bladder cancer and its treatments, not unknown. You need to try and get hold of your CNS or consultant in the morning to find out what is going on. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Denby
Posted by

Hello Nickfreckle, I have no answers but just want to let you you know I am thinking of you with the worrying wait to find out more and pain that bad.

Either way if you can manage to contact PALS about the shocking A&E verbal treatment, hopefully someone will retrain that doctor so he doesn't do the same to anyone else.

Denby 

lucy-l
Posted by

Hi nick,

So sorry you’re still in pain, you must be so frustrated with the ways things are being handled.

Hope things improve very soon and you can get some answers.

Luce x

nickfreckle
Posted by

Had the results back from my CT - over the phone from my Urologists secretary - nothing of concern. Asked if it showed anything that could explain all these issues and pain and she said she didn't know.

Clearly gone are the days where you get to see the doctor to discuss the results. Find this pretty shocking to be honest.

rily
Posted by

Hi Nick. Good to know your scan showed nothing to worry about. Not being able to discuss your concerns must be worrying. GPs are ok for basic stuff, but anything cancer related needs to be discussed with the specialist. Do you still have regular meetings with your consultants? I had 6 monthly consultations with both my urologist and oncologist. These were staggered, so I got to see someone every 3 months which was a comfort if I had any concerns. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?