DM ,AC
Thanks for the reply, I did write a post yesterday but the site came up with access denied an I lost the post.
Radiation cystitis seems to cover anything from a slight stinging to total dysfunction of the bladder or perhaps it should be destruction of the bladder. I had my treatment last year and I was told all the RT machines I would be on were reasonably new and not like the older scatter gun machines that used to be used. Strangely the effect on my urethra has been positive and my flow rate sometimes reaches around 10 mls/sec. Unfortunatly the SPC also increases the chances of getting bladder cancer.
My GP is a very experienced doctor but I was surprised when she said I was the first patient she had ever seen asking about radiation damage to the bladder. A pelvic radiation association gave me the names of two consultants who specialise in pelvic radiation damage and my GP is writing a couple of referrals. I also spoke to a nurse specialist in the oncology department yesterday, see is thinking along the same lines as myself, let's get into the bladder see what is going on check for more clips and possibly take a biopsy. The nurse specialist was not aware of the oxygen treatment and my GP was a little sceptical of the doctor who advised having the oxygen treatment.
My urine was dipped yesterday and it did indicate a possible infection, so the sample has been sent to the lab to be grown / cultured to get the right antibiotics.
Apparently the appointment with the late effects team next week is quite thorough and may be upto and hour long.
Thanks Chris