Hi All, My first post on this forum, I would like to tell you of my experiences since I was diagnosed with this terrible disease and would appreciate any comments you may have about my treatment.
2nd March this year I had a Flexible Cystoscopy and was told that I was the owner of a Papillary and 2 CIS tumours. 3 weeks later I had my first TURBT on 28th March followed the next day by mitomycin c, On 4th June I was told by my consultant that the Cancer was T1 G3 and that a further TURBT would be done followed by BCG, 4 days later I had my second TURBT which was 10 wks+ from the day of my first one. I have recently found out that NICE advises that "If the first TURBT shows high-risk non-muscle-invasive bladder cancer, offer another TURBT as soon as possible and no later than 6 weeks after the first resection" I wish I knew this at the time to ask about why it took 10 weeks for me.
I started the induction BCG on 18th September 14 wks+ after the second TURBT Unfortunately after the first 2 treatments I had a UTI which delayed further treatments for 2 weeks (4 days for Lab results and 1wk Antibiotic to work) I received 2 more treatments then had another UTI with the same scenario. I was informed by my GP that I would be very susceptible to UTI's because of Catheterisation, Enlarged Prostate and a 13mm Kidney Stone. The hospital has not contacted me as to any further appointments and I can not contact urology dept last Friday as the department is closed so I tried the appointment office and they told me that no future appointments have been made for me which is worrying as I really want the BCG treatment plan to work and not to have anything more invasive.
Looking forward to any observations or comments from any Old Hands or Newbies on this Bladder Cancer Forum you may have.
Best Wishes to All
Hi and welcome to the group. Your 10 week wait for a follow up TURBT is not unusual in our world. Most urology departments struggle to cope with demand. Being left in limbo as regards your BCG treatment is not right. We are all monitored and followed up for years. Were you allocated a CNS ( designated cancer nurse specialist ) ? If so that is your first point of call. If not, you need to contact the urology dept. to find out what is going on. At some point you should have a follow up flexible cystoscopy to see how the BCG is working. Best wishes
Hi T1G3. good to know you have made some progress with appointments. It is always an idea to phone and check when waiting for appointments. Sometimes different departments fail to communicate with each other. I hope it goes well. Best wishes.
Hi . Good to know you are nearly there and seem to be coping ok. I never had BCG, but being on here for a while, there seems to be a variation in timing. I think it is tailored to the individual. Fingers crossed it is doing the business. Best wishes.
