Hi - yes we have lots of dr appointments that is for sure!
I am doing well, I had chemo first then I had my bladder removed on June 2016. I go to ct scans every 3 months and who knows! I am just rolling with it at this point, it is so rare - no one really knows. I did hear from a man who just celebrated 3 years cancer free from small cell, I know a woman who has been cancer free for almost 8 years now.
If they ever do want to take the bladder - my life has not really changed very much. I am active and travel. I was very worried about this but it just hasn't been the big deal I thought it would be. The small cell is the big deal in the whole picture.
Please do keep me updated. So few of us out there. Take care - Laura
I am not sure if you were able to keep your bladder. I was fortunate and was. It has actually been going very well for me. I have had 2 rounds of chemo and have 2 to go. The DR's are still fighting over whether I must have radiation also. Urologist says, no. Oncologists and radiation oncologist say, yes. I am having another biopsy done this week to determine if there is still cancer in my bladder. When the dr originally removed the tumor (size of his fist) from the bladder diverticulum he thought he added enough of a margin around it to be safe. The pathology came back that tumor cells were present in the margins. So the debate started. Even after a Tumor Board, they were still debating. Take the bladder, leave the bladder and do radiation, build a new bladder from intestines, bag him for the rest of his life. All not viable options when I could very well no longer have cancer present. For now I live my life through dr appointments and tests. I know the odds are against me for cancer to rear its ugly head again but I can't sit back and let it consume me or my quality of life. Please keep in touch and let me know how you are doing.
I'm convinced some dr somewhere is writing a paper about me but has to wait for the last chapter to be written.
Appreciate you well wishes. As it turns out, I am in a very small category of bladder cancer patients with Small Cell Carcinoma who have been able to keep their bladder. That number would be so small that there is no precedence for treatments. Radiation and chemo is where the dr's are heading after a tumor board meeting a couple of days ago.
I know you are looking for people who have had a similar diagnosis as you (I haven't) but I wanted you to know I read your post. Good luck.
08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
11/02/16 - Bluelight cysto, TURBT and biopsy - all clear!
12/01/16 - BCG 6 x's. (6 of 6 BCG done 01/05/17.)
I'm in a holding pattern for three months. I return for cysto in April, 2017. I call myself cancer free...