Dear Dan,
I am writing to you from my husband's hospital room at Johns Hopkins in Baltimore, MD. He had his radical cystectomy on Monday, Nov. 5th. He's doing great.
Here is a quick synopsis of his chain of events:
1. Blood in urine (gross hematuria) on June 8th, 2007. Followed by blood work, urinalysis,and then a cystoscopy on June 28th.
2. First TURBT - July 2nd. DX - more than 10 tumors, 1 centimeter and larger, many of which were grouped together, suggesting muscle invasive.
3. Pathology results came back - stage T-2, T-3, muscle invasive. I forget the other exact details and don't have the info at hand. But muscle invasive is enough info.
4.CAT scan July 12th. Bone scan July 13th.
5. Met with Dr. Mark Schoenberg at Johns Hopkins for opinion. Brought all test results with, including the pathology slides. He had done 541 RC's at that point in time. He suggested three months of chemo first, followed by the RC.
6. July 30th - met with Dr. Robert Uzzo at Fox Chase cancer center for second opinion. He suggested we get the RC done in the next 3 weeks. He had done 150 RC's at that point in time. He advised against chemo because he felt it only improved your survival chances by 5% or a little more than that, and why go through the chemo.
7. Spoke to our good friend who is an oncologist. He read all the studies on the subject and said he liked the Hopkins model better. We trust this guy - he's really brilliant. And guess what - if you're in that 5%, you'll be glad you had the chemo.
8. August 1st - went to Schoenberg so he could do his own cystoscopy. He wanted to see for himself. Also the Hopkins pathologists had to re-evaluate the original slides of the cancer cells. They trust no one else's opinions - they need to see for themselves. The original pathology was done at our local hospital in PA.
9. August 7th - met with the oncologist at our local hospital. He told us the protocol:
day 1 - cisplatin/gemzar
day 8 - gemzar
day 15 - gemzar
day 22 - off
day 29 - cis/gem
day 36 - gem
day 43 - gem
day 50 - off
day 57 - cis/gem
day 64 - gem
day 71 - gem
day 78 - DONE
10. August 9th - went to the "big" bladder oncology specialist at the University of Pennsylvania. He described the exact same protocol as our local oncologist did, as detailed above. We asked if we could get the chemo done locally and he said "absolutely."
11. Chemo began August 13.
12. Chemo ended October 22nd.
13. Radical cystectomy Nov. 5th.
14. Pathology report came back Nov. 7th - ALL CANCER GONE!!!!!!!!
Please feel free to reply or if you want i'll give you my phone number. My husband is 58, in great health - no other health issues at all - and never smoked. We know how much this all sucks. The chemo was worse than the surgery but well worth it.
Eileen