Bladder Cancer/Small cell bladder cancer

Posted by David O'Sullivan @daithio, May 4, 2017

Anyone here been diagnosed with small cell bladder cancer. I had a cystectomy in later February (at a non-Mayo hospital) and was told that all visible cancer had been removed. Today at a 2nd opinion session at the Mayo I learned that the original diagnosis missed the fact that I have small cell bladder cancer. I'm in shock that the original pathology work missed this. I will be starting chemo ASAP. I know the outlook is not good and I'm looking for some positive threads to hold onto. Thanks

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@samasama

Hi Jimmy, thank you for answering.
I also heard about Keytruda as a second line therapy.
I wish you the best for your scan🙏🏼
Let us know about the result.

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Wilkommen, @samasama. The results of the chemotherapy sound amazing. Are you saying that there is no evidence of the tumor and no evidence of the metastasis in the bone marrow? I don't think that there is any clear answer on how to prevent a recurrence, but eating healthy and exercising/physical activity as your partner is able will help make the body be ready for future treatments if necessary.

Is the next step watch and wait or proton beam therapy?

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@colleenyoung

Wilkommen, @samasama. The results of the chemotherapy sound amazing. Are you saying that there is no evidence of the tumor and no evidence of the metastasis in the bone marrow? I don't think that there is any clear answer on how to prevent a recurrence, but eating healthy and exercising/physical activity as your partner is able will help make the body be ready for future treatments if necessary.

Is the next step watch and wait or proton beam therapy?

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Hi Collen, yes!💕
No evidence of Tumor an Bone marrow.
The only thing they saw was fibrotic tissue ( don’t know if it’s correct English) as a sign for former cancer in the bladder.
The 7 th cycle will start at the 30th of January and we’ ll have an appointment in a German clinic who treat with proton beam therapy.
We’ll see what they say.
When the therapy is finished, he will do a PET CT every 2-3 month, also check the Tumormarkers Chromogranin A, NSE,NYSRA and CEA.
And keep the fingers crossed 🤞

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My 73-year-old father was diagnosed with muscle invasive small cell cancer of the bladder in October 2018. He went through a few rounds of immunotherapy treatments before undergoing a radical cystectomy a few weeks ago and so far is adjusting well to the stoma. Followed up with the oncologist and was told nine lymph nodes were removed and one showed evidence of small cell carcinoma. He is now scheduled to go through five treatments of Cisplatin/Etoposid. Has anyone else been diagnosed with this type of bladder cancer and or does anyone have any experience with this type of chemotherapy agents (what to expect, etc.)

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@tattrigoo

My 73-year-old father was diagnosed with muscle invasive small cell cancer of the bladder in October 2018. He went through a few rounds of immunotherapy treatments before undergoing a radical cystectomy a few weeks ago and so far is adjusting well to the stoma. Followed up with the oncologist and was told nine lymph nodes were removed and one showed evidence of small cell carcinoma. He is now scheduled to go through five treatments of Cisplatin/Etoposid. Has anyone else been diagnosed with this type of bladder cancer and or does anyone have any experience with this type of chemotherapy agents (what to expect, etc.)

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Hi @tattrigoo, welcome to Connect. You'll notice that I moved your message to this existing discussion about Small Cell Carcinoma of the Bladder (SCCB). I did this so you can easily meet others talking about small cell bladder cancer, like @samasama @jimmy2248 @sandielegal and @whitneyvet. Click VIEW & REPLY to scroll through past comments.

@samasama's partner recently had chemo - Cisplatin/Etoposid and @jimmy2248 underwent the same regimen a little while ago, so hopefully they can answer questions and share their experiences with you. @sandielegal what treatments did you have?

@tattrigoo, how did you father tolerate the immunotherapy? Was it Keytruda?

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38 months ago I rang the Bell on Thanksgiving Day 2015. 30 Radiation treatments, 5 Chemo (3 days each) I see my Oncologist every three months, Now we have moved to every Six Months. Today I am Happy to say I have no sign of the disease. My Chemo was Cisplatin/Etoposid. Those days were long 7 to 9 hours For three days in a row but I had absolutely No Nausea (Gained 40 pounds)
I suffered with most of the normal side effects starting about two weeks after all treatment had ended. God Bless You! I will be praying for your father

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@samasama

Hi from Germany
My Partner was diagnosed with Small cell bladder cancer in Sep 18.
The Tumor was 6 cm, spreaded in the marc of the bones of pelvis, spine.
He started with Cisplatin/ Etoposid.
After 3 cycles of chemotherapy the PET CT showed NO metabolism 🙂
No tumor, no metastasis!,
Yesterday the 6 th cycle of chemotherapy started.
He will have another one end of January.
He didn‘t had a cystectomy because of the metastasis in the marc of the bones.
End of January we have an appointment in a clinic for ion beam therapy.
What else can we do to prevent a rezidive?
@sandielegal : How are you?

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38 Months Clear.... and Happily Healing! I Listen to body more (maybe too much) eating better, laughing more. Praying for you!

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@tattrigoo

My 73-year-old father was diagnosed with muscle invasive small cell cancer of the bladder in October 2018. He went through a few rounds of immunotherapy treatments before undergoing a radical cystectomy a few weeks ago and so far is adjusting well to the stoma. Followed up with the oncologist and was told nine lymph nodes were removed and one showed evidence of small cell carcinoma. He is now scheduled to go through five treatments of Cisplatin/Etoposid. Has anyone else been diagnosed with this type of bladder cancer and or does anyone have any experience with this type of chemotherapy agents (what to expect, etc.)

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Good Morning@tattrigo,
my partner had his 6 th cycle of Cisplatin/ Etoposid on Wednesday/ Thursday/Friday.
At the beginning of each cycle he starts with a medicine against nausea.
The name is Akynzeo, its very good.
The first day, the Cisplatin- day is pretty long, up to 6 hours, because of the additional NACL ( to take care of the kidneys)
He should drink a lot, thats very important
.He has side effects like a moderate Nausea, sometimes headache, muscle pain, but its tolerable.
I‘m also in the german bladder forum, there are also some small cell bladder Patients.
Two had to stop the chemotherapy, one woman said, it was like hell, but its 6 years ago
I think its very invidual.
Is his cancer local or did it spread?
Good look for your father 🙏🏼🤞🏼

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Dear Sandielegal, thank you for answering and so glad to hear, that you are so well💕
Did you have a radical cystectomy?
And had your cancer spread when they diagnosed it?
I know that this is a big problem!:-((
I wish you the best 🙏🏼

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@samasama

Hi from Germany
My Partner was diagnosed with Small cell bladder cancer in Sep 18.
The Tumor was 6 cm, spreaded in the marc of the bones of pelvis, spine.
He started with Cisplatin/ Etoposid.
After 3 cycles of chemotherapy the PET CT showed NO metabolism 🙂
No tumor, no metastasis!,
Yesterday the 6 th cycle of chemotherapy started.
He will have another one end of January.
He didn‘t had a cystectomy because of the metastasis in the marc of the bones.
End of January we have an appointment in a clinic for ion beam therapy.
What else can we do to prevent a rezidive?
@sandielegal : How are you?

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I am feeling amazing 38 months clear! See The Urologist and Oncologist now every 6 months

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@samasama

Dear Sandielegal, thank you for answering and so glad to hear, that you are so well💕
Did you have a radical cystectomy?
And had your cancer spread when they diagnosed it?
I know that this is a big problem!:-((
I wish you the best 🙏🏼

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Thank You ❤️ My small cell carcinoma was found very early (due to blood in my urine) Told by my urologist that it was T3 and that a radical cystectomy would be scheduled next .... Met with my Oncologist Radiologist (he had just transferred from Mayo to Roger Maris)
Both my Oncologists agreed on treatment plan much like for small cell Lung Cancer. Chemo and radiation and by the Grace of God my bladder has been saved and is checked regularly and working wonderfully

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