I am writing for my husband who was diagnosed with CIS baldder cancer last June (2008) and first wanted to thank all of you for your blogs and stories which helped us prepare for what was to come.
Long story short, my husband is 48 and like many of you had urinary urgency, blood in the urine and repeated trips to the doctor in 2007 & 2008. He has a strong family history of Prostate cancer so I, being a nurse, kept dragging him back. Luckily our Nurse Practioner became suspicious and referred him to a urologist who took a "closer look" ( sorry for the pun).
His first Cysto in the office made him nervous as he called me into the room to "discuss" what he found. We could tell he was trying to tell us it was serious, and my husband was nervous about the series of flat red spots in his bladder that seems to bleed easily. Being the nervous "nurse-wife", I immediately "googled" everything I could about bladder cancer, finding you all on the web cafe from a card our urologist had given my husband. I read all your blogs in one night and settled in realizing what we had ahead of us. My dear husband who I have known since he was 12 and dated since he was 14 was maddenly calm.
He was a smoker from the age of 15 to 48 and I, like many of you, found out that this is a prime cause of bladder cancer. After the cysto, he had his first biopsy under anesthesia which only came back "dysplasic', or not cancer- but not normal either. Luckily , our doctor believed his gut instead of a lab report, and scheduled another biopsy in 6 weeks. This time there was an actual tumor, but again the bisposy of this came back "dysplasic". Our doctor sent it off to two places and while we waited he insisted we treat anyway, as the lining of his bladder was so reactive. In June of 2008 he was diagnosed with CIS or Cancer in Situ which we had suspected all along. He started treatment in August of 2008 as he had a lot of bleeding problems after the first biopsy and had to wait 6-8 weeks to start treatment.
I am the first to appreciate and thank those who talked about what you went through as it helped prepare him/us for what was to come. We went for the 6-10 week treatments -often having to stop for infections or bleeding . Luckily he only had two or three setbacks and finished just in time for 6 weeks off over Christmas. That was really a present, let me tell you!
My present came in March when he finally took the prescription for Chantix that he got in Janurary…filled it… and STOPPED SMOKING on March 2nd, 2009!! I am SO PROUD OF HIM!
He had decided to stop after the doctor finally told him if he did not try to stop he may lose his bladder, AND the fact that his second biopsy in January of this year showed another tumor and not much change in his bladder lining, neccesitating another round of BCG treatments.
Well….. his first treatment of the second round of BCG went okay in the office, but later that night he developed chills and a fever. Thanks to one of you who blogged, I called the doctor who verified that he may have been having a systemic reaction to the BCG. This can happen if the lining is bleeding or cut and the BCG comes in contact with it. Scary, but you can get TB if it gets in your blood stream I guess.
So… that was last week and now he found out that the doctor does not want to take the chance on continuing the BCG treatments after he had the reaction as it "could be worse the next time". What he wants us to do is to wait and let his bladder heal and look in May with another Cysto in the office. Then start another course of treatments called Mitomycin if it does not look any better.
So, oh wise ones… it looks like this is given the same as the BCG but is actually chemotherapy of some sort?? Can anyone give us an idea of side effects? Can he work the next day or will this tire you out more? Also our doctor did not say we needed any protection for intimate relations if you know what I mean, but I had read it was safer to hold off or use condoms…any suggestions?? It looks like this may go on awhile and we are still human. Do we need any preparation for the new treatment? We used bleach for the BCG, but our doctor said it was not necessary and I am thankful to you all for telling us it makes the house safer.
Thanks for any info.