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
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
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.
Richard, thanks for your support and the advice re exercise. I live in Scotland; age 60. I'm certainly not giving up as I have three young daughters. I still have my bladder but seems likely it will be removed once the the chemo is finished. I have confidence in my doctors and I'm getting very prompt attention, partly because of the type of cancer and partly, I suspect, because its so rare / interesting!
You aren’t alone. Although rare, there are plenty of us with small cell bladder cancer out there. Were they able to save the bladder? I had my initial surgery November 2016, chemo from February through April 2017. It metastasized and entered my lymph nodes September, radiation for 25 straight days through November and now have abdominal cancer. Will start extremely difficult to pinpoint radiation next week.
Sounds bad, yes! Absolutely not......
Now that they know you have cancer, the oncologists and urologists will be on top of any bump, bruise, or difference in your body. They can target it, remove it and get rid of it.
The best advise I can give you as a 3 time survivor is do not read the internet. If you trust your doctors, you can always get a second opinion, but do not keep searching until you find a quack who will tell you what you want to hear, take your money and you still aren’t any further along than you were before.
You’ll probably lose your hair from the endoplatin and cystoplatin (spelling probably wrong) that they will be pumping into your veins. Don’t just sit while on chemo therapy. The steroids will make you balloon up. Get exercise. Be alive. I don’t know what area of the country or world you are in or your age, but talk about it. Don’t let this horrible disease beat you. We are all here to be a support system for you, use it. Some of us beat it the first round and some of us didn’t but we are all united by one goal and that is to support each other.
Please keep in touch. Either through this bulletin board or contacting us individually. We are here for you.