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

Liked by sandieboyer

@jimmy2248

@samasama
Getting ready for "cyber knife radiation. For left adranal. Getting two doses. How's your partner doing. ?

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Hi Jimmy, everthing seems to be hopeless…
The last Scan showed that he has a local rezidiv:-(
Radiation for 31 times Start on Thursday.
The histology showed no PDL1 marcers, so there ist no chance for Pembrolizumab ( Keytruda)
Uniklinik Heidelberg called us, he can Start with Nivolumab and Ipilimumab, also on Thursday.
Good result, but only for 20%.
I pray that he is on of the 20%.
I know someone with a maligne Melanom,
He had metastasis 3 years ago, he started with this combi, he is free of cancer for 3 years now.
They told hin he has 3 more months.
I wish you Good luck🌈🤞🏼

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Hello there. My husband also has high grade small cell NEC of the bladder, diagnosed 9-2017. I hope you are doing well and I’d love to share experiences with you about this rare cancer if you’re amenable. Thanks, -Mary

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@marycedroni

Hello there. My husband also has high grade small cell NEC of the bladder, diagnosed 9-2017. I hope you are doing well and I’d love to share experiences with you about this rare cancer if you’re amenable. Thanks, -Mary

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@marycedroni Hello. I was diagnosed with small cell bladder around 8/2017 . I was 70. I started chomo. cysplatin and tropazone 16. nov of 2017.
Had 2 cycles. One cycle being 3 days. C scan after 2d cycle showed that the Chomo wasn't working. I had a cystosomy . removed my urinary bladder my prostrate and some lympth noded. . Started Cysplaton. Fer 9th 2018. Some small side effects from this . but we did 14 rounds. each round was one day, once every 3rd week. Is he on a similar regiment ?

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@marycedroni

Hello there. My husband also has high grade small cell NEC of the bladder, diagnosed 9-2017. I hope you are doing well and I’d love to share experiences with you about this rare cancer if you’re amenable. Thanks, -Mary

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Hi @marycedroni, I'd like to add my welcome. What treatments has your husband had? How is he doing now?

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Has anyone had brain radiation as part of their treatment? After a radical cystectomy in January my dad had four rounds of chemo, two EP and two MVAC. Dr now wants him to do brain radiation. I am concerned about the possible side effects and whether or not the risks outweigh the potential benefits. He lives alone. Diagnosis is muscle invasive small cell cancer of the bladder, Which was found in one of 18 lymph nodes

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@tattrigoo

Has anyone had brain radiation as part of their treatment? After a radical cystectomy in January my dad had four rounds of chemo, two EP and two MVAC. Dr now wants him to do brain radiation. I am concerned about the possible side effects and whether or not the risks outweigh the potential benefits. He lives alone. Diagnosis is muscle invasive small cell cancer of the bladder, Which was found in one of 18 lymph nodes

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Hi, my husband has 33 bladder radiation, no brain radiation.
It’s no medical guideline.
He had Nivolumab for 3 times and Friday he will start with Ipilimumab
Next scan beginning of July.
I‘m scared

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@samasama

Hi, my husband has 33 bladder radiation, no brain radiation.
It’s no medical guideline.
He had Nivolumab for 3 times and Friday he will start with Ipilimumab
Next scan beginning of July.
I‘m scared

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Samasama, it can be scary. I am so thankful I found this site, as it’s hard to find information on this particular cancer. I’ll be praying for you and your husband.

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@samasama

Hi, my husband has 33 bladder radiation, no brain radiation.
It’s no medical guideline.
He had Nivolumab for 3 times and Friday he will start with Ipilimumab
Next scan beginning of July.
I‘m scared

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@samasama .I finished radiation on left adrenal glan. Waiting for c scan in June of july. Getting my thyroid Checked out. June 3rd. cancer Endocrinologist will evaluate me on June 3rd.
Talking this out with this group makes me stronger, more determined and grateful!

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@tattrigoo

Has anyone had brain radiation as part of their treatment? After a radical cystectomy in January my dad had four rounds of chemo, two EP and two MVAC. Dr now wants him to do brain radiation. I am concerned about the possible side effects and whether or not the risks outweigh the potential benefits. He lives alone. Diagnosis is muscle invasive small cell cancer of the bladder, Which was found in one of 18 lymph nodes

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@tattrigoo, does your dad have metastases to the brain? You are wise to weigh the benefits versus the possible side effects. What side effects and benefits did they explain to you? Will it be whole brain radiation?

@samasama, how did the treatment with Ipilimumab go on Friday?

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@colleenyoung

@tattrigoo, does your dad have metastases to the brain? You are wise to weigh the benefits versus the possible side effects. What side effects and benefits did they explain to you? Will it be whole brain radiation?

@samasama, how did the treatment with Ipilimumab go on Friday?

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No, no metastasis. We were told it was for preventative measures- prophylactic cranial irradiation. I have no idea what that entails, other than what I learn from the Internet. We are meeting with the radiation oncologist in a few weeks to learn more about it.

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My 82 yo grandma was diagnosed with bladder cancer on January 2019. She is other wise healthy. We tried 6 treatments of immunotherapy but as of her last scan the tumor has grown. Due to her size of tumor it has completely obstructed her ir one flow therefore she has bilateral nephrostomy tubes. All blood work looks good and normal kidney function. Our doctors back home In Texas don’t want to operate her due to the size. We are heading over to MAYO in the hopes of having a surgeon give her some good news. Anyone here been through something similar? Her tumor is contained only to her bladder and has not spread according to her latest scan. Any advice is greatly appreciated.

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Hello @mcgonzalez36,

I moved your message to the Cancer group where we have several members talking about bladder cancer, and I'd like to connect you with them. I'm so glad you reached out to Connect, and even more glad to learn that your grandma will be coming to Mayo Clinic. Waiting is sometimes the hardest part – it helps to hear from someone who has been there.

While we wait for others to join in here are some discussions which I would encourage you to go through:
– Bladder Cancer: High grade https://connect.mayoclinic.org/discussion/bladder-cancer-1/
– Bladder cancer https://connect.mayoclinic.org/discussion/bladder-cancer-20c2b4/

There are so many kinds of bladder cancer and ways to treat it – do you know what type of bladder cancer your grandma has?

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@mcgonzalez36

My 82 yo grandma was diagnosed with bladder cancer on January 2019. She is other wise healthy. We tried 6 treatments of immunotherapy but as of her last scan the tumor has grown. Due to her size of tumor it has completely obstructed her ir one flow therefore she has bilateral nephrostomy tubes. All blood work looks good and normal kidney function. Our doctors back home In Texas don’t want to operate her due to the size. We are heading over to MAYO in the hopes of having a surgeon give her some good news. Anyone here been through something similar? Her tumor is contained only to her bladder and has not spread according to her latest scan. Any advice is greatly appreciated.

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@mcgonzalez36 I, too am glad your grandmother is going to Mayo. Will you or another family member accompany her? Before she goes, think of every possible question you ca. Write them in a notebook with room for answers. Questions like, can radiation be done to shrink the size of the tumor? Is 82years of age too old for surgery? Can she possibly have nephrostomy tubes for a long time? Will the tubes be better than surgery for her and her age? What can she expect in the long run?
(My mother was recently diagnosed with bladder cancer and she had radiation to shrink the tumor since she’s 95 and too old for surgery. She’s doing well so far.)
If you have a smart phone, you might want to use the VoiceMemo function and tape your visit with the doctors. Then you can replay it any time. When is your grandmother going to Mayo?

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Hello @mcgonzalez36,

The suggestions that @becsbuddy, offered for your grandmother's appointment at Mayo were very good. I hope that you follow some of those suggestions. On Connect we recently had a posting on tips for an appointment with a new specialist. Here is a link to that post, I think you will it helpful as well. Just click on the link and you can read about How to Get Off to the Best Start with a New Specialist,

https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Will you post again and let us know how she is doing?

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@becsbuddy

@mcgonzalez36 I, too am glad your grandmother is going to Mayo. Will you or another family member accompany her? Before she goes, think of every possible question you ca. Write them in a notebook with room for answers. Questions like, can radiation be done to shrink the size of the tumor? Is 82years of age too old for surgery? Can she possibly have nephrostomy tubes for a long time? Will the tubes be better than surgery for her and her age? What can she expect in the long run?
(My mother was recently diagnosed with bladder cancer and she had radiation to shrink the tumor since she’s 95 and too old for surgery. She’s doing well so far.)
If you have a smart phone, you might want to use the VoiceMemo function and tape your visit with the doctors. Then you can replay it any time. When is your grandmother going to Mayo?

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Thank you all for your advice. We will arrive on Monday and have her test done on Tuesday and see her doctor on Wednesday. We’re hoping for good news.

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