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Small cell bladder cancer

1 month 3 weeks ago #54831 by Lwsb
Thank you jmhess. It is very good to hear how you are doing. Laura

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1 month 3 weeks ago #54830 by JohnDee
Hello, JM Hess, and thanks - your comments about life after bladder removal, with a pouch, are particularly helpful. John

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1 month 3 weeks ago #54827 by jmhess50
I am 67 years old and had not missed one day of work for illness in 44 years. I was shocked to be diagnosed with SCBC on March 2015, and was subsequently treated with Etopiside and Cisplatin. The tumor was embedded in the muscle walls of my bladder. My surgeon at Foxchase Cancer Center in Philadelphia recommended removal of my bladder and an ileal stoma was created. The operation was performed to remove my bladder on August 2015 and I am still cancer-free! Some things I learned through this experience..... I searched the world on the internet to find a study or doctor that would say that small cell bladder cancer has anything but a poor prognosis and I didn't find it. (don't even bother's not good!) It was emotionally traumatic to have to accept the fact that I was stuck with a urostomy pouch for the rest of my life. All I needed to do was open my eyes and look around to realize that I was the fortunate one because it saved my life! I was a walking dead person for the 1st two years after the diagnosis because I figured I wouldn't make it. In 15 days, it will be 3 years and I plan to live a long is good. I have been blessed with good support from family, friends, and work. I am still working 40 hours a week, I once worked 50-60 hours a week. There is hope for you and you have your whole life ahead of you. If you have a doctor you trust, listen to them, if not? Find another doctor!
I just came back from another mission trip to El Salvador and have continued to travel. Having a pouch is not that big of a deal. Enjoy your life once you get through this mess!

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1 month 4 weeks ago #54803 by atb1963
Hello, JohnDee. I was diagnosed with small cell bladder cancer in October 2017. Biopsies from two previous TURB procedures, in August and September, showed no small cell component. It appeared for the first time on the path report following my October 2017 partial cystectomy. Following the partial I had four rounds of chemo (Cisplatin and Etopiside), which concluded a month ago. An in-office cystoscopy and a PET/CT scan performed a week ago showed all clear. The issue before me now is whether I go ahead and have a total cystectomy, or do I take a "monitor and see" approach. My treating urologist, a Sloan Kettering alum, is adamant that either approach would be reasonable under my circumstances. I had a consultation five days ago with a urologist at MD Anderson who is one of the top bladder cancer specialists in the world. Given MDA's reputation for aggressive treatment, I fully expected him to tell me I should have a total cystectomy post haste. To his considerable credit, he was quite open-minded and, given my particular circumstances, did not consider the monitor approach to be unreasonable, even though the total might be the safest route to take. The oncologist I saw at MDA seemed to feel pretty much the same, although he is going to get back with me after he consults with some of his colleagues. Apologies for the lengthy blathering, but I suppose the point is to keep an open mind regarding all of your options...the "standard protocol" may or may not be the only or best option for you. The fact that I had the partial cystectomy, rather than jumping straight to a total, seems to have placed me outside the procedural box. At this juncture I am grateful for that. Hang in there. Andy

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1 month 4 weeks ago #54799 by Lwsb
Just to give you a little of my experience. I had a large tumor and had chemo - cisplatin and etoposide. Yes I did have my bladder removed 6 weeks after chemo and 1 year and 9 months no evidence of disease. I also know of another small cell person who also did the same regimen I did and is 9 years NED. My best to you. Laura

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1 month 4 weeks ago #54793 by Onevista1
Just like me, I was able to keep mine. Funny that the surgeon is the one who fought the medical board not to remove it. He said at 60 years old, you have too many years for us to remove your bladder. Although it has metastasized, there is no more signs of cancer in my bladder. All cancers now, no matter where will be classified as bladder cancer. The chances of cells escaping during surgery are far greater than if they leave the bladder in tact assuming they got it all the first time.

Yes, the rarity of small cell bladder cancer does wake up the troops and everyone wants to study you. Unfortunately for us who have small cell bladder cancer there are no clinical trials anywhere in the world. I am on my own type of trial as the doctors have used both platinum and plant based chemo on me and neither was effective to stop the spread of cancer. Now I am in Keytruda which although is not for small cell cancer, has had great results as an immunotherapy for other cancers.

Sending nothing but great vibrations for a complete recovery.

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