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Small cell bladder cancer

2 years 10 months ago #54374 by Lwsb
I can only speak for myself. Dec 2015 I was diagnosed with small cell T3. I had similar chemo regimen and yes bladder removal and 20 lymph nodes removed in June 2016 I just had my 1 1/2 year ct scan yesterday. No evidence of disease. My life is back. I live happily and have a full life without a bladder. We are a small group of people and yes their is a lot hope. I know another woman who had small cell and she is 9 years out and doing well, also same chemo regimen and bladder removal. My best to you and if you have any questions please ask. Laura
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2 years 10 months ago #54359 by Onevista1
I had the same combination of cisplatin and etoposide that they are giving you. They will also give you steroids, anti nausea drugs and Benadryl along with massive amounts of fluids. These are platinum based chemo drugs that will screw with your kidneys and their functions. My words of caution are to make sure you are as active as possible. Each day of chemo will last approx 6 1/2 hours. Drink massive amounts of water. I unfortunately retained the water and instead of losing weight from this combination of drugs, I gained 30 pounds. I am just now losing the water weight while on a plant based chemo drug. But my kidneys took a major hit from the cocktail of chemo.

Let me know how you are doing. We are in a small group who have been able to keep our bladder. Less than 1% of all cancers is small cell bladder cancer and less than 1,000 worldwide patients have kept their bladders.

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2 years 10 months ago #54357 by atb1963
Thank you, Richard, for your kind words and encouragement. In a few days I start four rounds of chemo using cisplatin and etoposide, a combination targeted specifically at small cell. I certainly do hope to keep my bladder, being 54 years old and in otherwise very good health. Moreover, the partial cystectomy removed the entire small T2 tumor and I have had no recurrence. I have had no physician dispute the proposition that it is very unlikely that a bladder with no detectable disease is shedding "fresh" metastatic cancer cells. Therefore, any metastatic spread I may currently have is a cow that left the barn before the partial cystectomy. Hoping that the chemo will address any of that. I wish you the best in you current battle, and keep up the attitude. Thanks, Andy.

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2 years 10 months ago - 2 years 10 months ago #54352 by Onevista1
I was extremely fortunate to be able to keep my bladder also. UT Southwestern and MD Anderson are one in the same for research and opinions. Two of the top hospitals. I refused to accept that there would be anything other than a bad cold that will take longer to get over. Small Cell Bladder Cancer is very nasty. DO NOT go on the internet and start doing your own research. There are 6,000,000 opinions and none of them say anything more than gloom and doom. It is attitude that gets you through things. I know what you are about to read in my post will not be encouraging but you can never give up. Chances are they will start you on Platinum Based Chemo for 4-6, 3 day cycles. If possible, hold off on radiation. They can only do it once in the pelvic region. If there are clear margins, fight to keep your bladder and again, no radiation. Keep the radiation option open for when it returns and it more than likely will return. I'm not certain of your age (I am 61) but do you best to fight to keep your bladder. I did and even though it has come back, it is not in the bladder. Close to it, but not inside.

My tumor was larger than my bladder but was protruding from the inside out (a diverticulum, or bulge) so there was an area that they could remove of the bladder, reroute my right kidney and seal it off.

Unfortunately for me, I am now battling Stage 4 (inoperable) small cell (classified as bladder) on my lymph nodes on the outside of my bladder. My right leg swelled up so bad it looked like a tree trunk. The Kidney Specialist mistreated as a blockage for 8 weeks before my Urologist took one look at me and knew what it was. Had 2 different CT scans and a tumor the size of my fist was encapsulating the lymph nodes. Now that I am having radiation, the swelling is gone after 2 weeks. I look forward to beating this again and getting my life back in order.

It is attitude. Find a good physiologist or local support group. Someone other than a family member to talk to. They will say they want to be involved but it takes a toll on them to so find someone to dump 200 pounds of grief, aggravation and just a load of crap on, them leave until the next session. It works.

Absolutely, keep in touch and I wish you the best of luck. We are a small group but we are there for each other. Have to head out to radiation and chemo this morning. Talk to you soon

Richard
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2 years 10 months ago #54350 by atb1963
Hello, Onevista1. I was recently diagnosed with small cell bladder cancer. Had a single 1.8 cm T2 tumor extending into inner half of muscle wall with clear margins, which was removed by partial cystectomy. That procedure was necessary to determine whether muscle invasive. Starting chemo next week, and have an appointment at MDAnderson coming up to get a fresh look at everything. Hope to keep my bladder, if at all possible. How did you manage to accomplish that with a small cell diagnosis? Any guidance you could give would be greatly appreciated.

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3 years 4 months ago #53231 by Lwsb
Sounds very good! Enjoy your summer.

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