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Small cell bladder cancer

2 days 12 hours ago #54381 by Onevista1
Andy,
If they can treat it through normal protocol like you have described, remember a surgeon makes their living cutting things out. A true professional does their best to be as minimally invasive in order to achieve the best solution. Everyone except my urologist at the Cancer Board recommended total removal. My urologist was certain he had been able to remove the internal bladder cancer and tumor without removing the bladder. Although my cancer moved into the lymph node system (after removing 35 lymph nodes during my surgeries) I still have my bladder and intend to keep it that way.

All my doctors are also Sloan Keddering trained and Yale graduates. They all have pedigrees. But remember that there is nothing for certain except your attitude. There is only a few of us that have been able to keep our bladders. Let’s prove them all that less is more and beat this cancer. They obviously caught yours very early. Every case is different. We can only give you support based on our individual previous treatment. Get your treatments done, get you scans done quarterly. Wishing you a complete remission.

Richard

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2 days 13 hours ago #54380 by Lwsb
Hey Andy. MD Anderson has the best information on small cell. I went to Dana farber and they did similar guidelines. Let us know how you are doing. Best Laura

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2 days 15 hours ago #54379 by atb1963
Thank you, Laura. Your encouragement is much apprecated. There is an interesting dynamic taking place. My urologist (Sloan Kettering residency) seems quite hopeful concerning the prospect of keeping my bladder, while cautioning that a total cystectomy may become necessary depending on how things develop. My oncologist (MD Anderson residency), on the other hand, seems to consider a total almost a foregone conclusion. Anxious to hear what they say at MD Anderson, where I am going soon for a second look. Thanks again. Andy

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2 days 18 hours 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
The following user(s) said Thank You: Cynthia

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4 days 5 hours 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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4 days 6 hours 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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