Bladder Cancer

[Bryans]

Hi everyone, I was diagnosed with this cursed disease a year ago, since then I have had 3 Turbt treatments to remove cells, and a course of BCG, now told this week that they have to refer me to another hospital as they cant do anymore treatment as they dont have the facilities, anyone know what comes next

[Andrew-at-FBC]

Hi, do you know what treatment they are now recommending?

[Paulwc]

My story almost the same as you and i am awiating bladder removal

[elenarosa]

I i was diagnosed last year and got one chemo treatment. i have not had to have any more removed, but i find that i cannot hold my urine and am incontinent. i am going to another doctor because my current doctor does not spend any time with me and i feel the removal of the tumor caused the incontinence. i am going for pelvic rehabilitation for incontinence and another doctor for advice. this is a cursed disease.

[hotoz57]

Hi mate,

In my case i had a turbt treatment to remove two quite large tumours,during the removal of one it went that deep into bladder wall that they punctured the bladder,they sewed it up temporary and rescheduled me to have the whole bladder removed.I had two options fitting a permant exterior bag or having a neo bladder made.A neo bladder is made from part of your lower intestine.it has no muscles or sense of fullness like the original bladder but with training you learn to know when to empty and use abdominal muscles to squeeze it empty.I am still fairly early into using my neo bladder,it starts out quite small but stretches in time to normal size.Due to the tissue it was made from it keeps producing the mucus that it did originally so the urine often has lumps in it,these need to be pushed out as they can cause blockages ,and in some cases you may need to self catheterise now and then.i havent yet as i have developed scar tissue that is partially blocking the ureter causing me to have regular infections and trips to the hospital.I have to juggle my chemo(as they found a 'warm spot' up near my lung ) with the need for this small op.Chemo hasnt been the horror story most tell,i havent had nausea and vomiting. But be warned ,it is not unusual that they remove your prostate at the same time as the bladder,which makes you impotent .I am told viagra can fix this ,,but which means when you orgasm there will be no semen to worry about cleaning up. I was a fairly healthy 58 yo before this problem so hope to boot it in the arse and hang aroung long enough to meet my grandchildren. Never give up it can be beaten.

[Dustbowlkid]

From the US here.....There is only 1 company at this time manufacturing BCG for us here in the US. If your medical facility was not contracted with the company, you were not guaranteed your dosages each week. You say a course, was this 1 treatment a week for six weeks? I have had 4 TURBT's in the course of last year. I have had 1 round of treatments for 1 time a week for 6 weeks, and I also had 1 round of maintenance treatments for 1 time a week for 3 weeks. I was allowed to skip the next set of maintenance treatments in February. I will go back on June 10 for another cystoscopy at which time I will do another round of treatments for 1 time a week for 3 weeks. The last 2 TURBTs were ordered because the cystoscopy revealed what looked like cancer growing, but turned out to be negative lesions. So I am considered cancer free at this time. Had the last TURBT returned a positive result, I would have been changed to another course of treatment of which was not revealed.

One last question. Has your cancer spread beyond the muscle lining of your bladder?

Good Luck

[ChrisRS]

Next treatment depends on the outcome of a Cystoscopy & biopsies following your initial BCG treatment (which is normally six weekly treatments). If your bladder is cancer free, then you should start maintenance BCG, which is three weekly treatments three months after initial ones, and then again three months later, and then every six months for a total period of 3 years. This all depends on your bladder being cancer free each time it is checked after a set of BCG treatments. So at the moment, either the hospital is no longer able to do BCG treatments or you require a different treatment that they are not able to offer. There has been a shortage of BCG available, which should no longer be the case in the near future.

Good luck.

Chris

PS. I have had four sets of maintenance BCG in addition to the initial instillation, so far.