Deb's story

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Deb was diagnosed with G2 pTa bladder cancer in 2012, and subsequently Carcinoma in Situ (CIS).

Hi there, my story to date...

I had had many visits to my GP over the years for UTIs and was given antibiotics as usual. New Year 2012 I noticed blood in my urine and went back to the GP again, asking to be referred as I was not happy with being given yet more antibiotics.  I had an ultrasound scan and was told there was a' fuzzy area' that needed more investigation.  I drove home feeling slightly worried, but thinking 'Hey - cancer won't happen to me!'  When I walked in the door the phone was ringing and it was my GP surgery to say they had had a call from the hospital. I was amazed at this speed but also more worried now as it must be serious for such haste!

I was referred to my local university hospital for a meeting with' the main man' who wasted no time in saying it was small but best get it out now, whatever it was.  About 4 weeks later in February 2012 I had a TURB T.  I arrived at my local hospital, was made ready for the procedure and when the surgeon came to see me he said he would not be able to give me any Mytomycin C as a follow up as there was none in the hospital.  I was slightly concerned by this, as I had read in the literature that I would be having it, but at that point in time we still did not know for certain that it was cancer and I didn't want to delay the op any further. Suffice to say it was cancer, but very small and non-invasive (G2 pTa).  I didn't find out how good or bad it was for a week and a half, as the surgeon did not come to see me after the op.  I was left with feedback from a junior doctor who could only tell me that I did have cancer.  I spent a week and a half not knowing, until I had a response from 'the main man' again.  I did query about the lack of Mytomycin and he said that as it was small the risk of recurrence was very minimal so I shouldn't worry.

Three months later and the first flexible cystoscopy was clear.  I was very happy.  The procedure wasn't too bad either and fascinating to see inside my own bladder.  Three months on again and a red area was visible, which the nurse practitioner said looked like an infection, but he wanted to be sure so I was scheduled for another op to do biopsies (now October 2012).  Upshot of that was that it isn't an infection at all, but CIS.  Wow, now things are getting more serious and I'm thinking 'Why Me?'  I've never smoked, worked with chemicals etc etc - feeling very sorry for myself now.

I started BCG treatment straight away - the supposed 'Gold Star Treatment' for bladder cancer.  I was also becoming annoyed now at the fact I hadn't had Mytomycin after the TURB.  Would that have saved me from CIS??  Who knows.  I wrote to the PALS team at my local hospital about this as I felt I needed to 'sound off'.  That was a mistake, as the surgeon who had done my second op in October scheduled a meeting after my 5th BCG installation to discuss my letter.  It was like waiting outside the headmaster's office!  He basically told me the Mytomycin would not have stopped the CIS and that he felt it was probably there when I had my TURB at the beginning.  I don't see how it could have been, when it didn't show up at my first flexible cystoscopy.  I won't ever forget his words to me then -'If you have your bladder removed now you have a 90% chance of survival, the longer you leave it the lower your chances'.  He might as well have hit me with a hammer.  He said CIS was very aggressive (I knew that, but he himself had put me on the BCG treatment, never once mentioning bladder removal).  I asked if he thought the BCG was worthwhile then, but didn't get a proper response to that.  I then asked about the 'heat and chemo' treatment that I had read about and whether that was effective for CIS and he said no.  I was at rock bottom after that.  I came home and cried, whilst rolling around for greatest BCG effect!  I contacted the company that supply the heat treatment to my nearest centre and they said it is used to treat CIS, how odd then that the surgeon should say differently.  Was it cost he was trying to avoid?  I don't know yet.

Anyway, I finished the initial BCG round just before xmas and had my next biopsies done in February.  Different surgeon (chosen on purpose!) said it all looked very good and the results came back clear as well - GREAT! He said I had a 60% chance of a 'cure' with BCG, especially as I had never smoked. Wow was I pleased to hear that! But always nagging in the back of my mind is the conversation with the previous surgeon. I can't get that out of my mind. I know bladder cancer has a nasty habit of re-appearing and I'm not stupid enough to hang onto a bladder that is going release cancer all over my body, but I'm determined to give other treatments a good chance first of all. I start the next BCG maintenance 3 week period in April so hoping for more clear results after that, but who knows. I've definitely had my confidence knocked.

I still have questions to ask: If CIS is non-invasive, as all the literature says, why is it classed as highly aggressive? Can it spread to other parts of my body whilst I am undergoing the BCG treatment? How does it spread if it's non-invasive? Is heat treatment really effective against CIS if BCG fails? Lots of questions but no-one to ask at present, as I haven't had a consultation at all, apart from my 'headmasters office' episode! The uro nurse at the main hospital is lovely, but very 'there there dear it'll be ok'. I need to get tough I think!

Thanks for reading my story so far.

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