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

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

samasama | @samasama | Apr 7, 2019

In reply to @jimmy2248 "@samasama Getting ready for "cyber knife radiation. For left adranal. Getting two doses. How's your partner..." + (show)

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🌈🤞🏼

marycedroni | @marycedroni | May 20, 2019

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

jimmy2248 | @jimmy2248 | May 21, 2019

In reply to @marycedroni "Hello there. My husband also has high grade small cell NEC of the bladder, diagnosed 9-2017...." + (show)

@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 ?

Colleen Young, Connect Director | @colleenyoung | May 21, 2019

In reply to @marycedroni "Hello there. My husband also has high grade small cell NEC of the bladder, diagnosed 9-2017...." + (show)

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

tattrigoo | @tattrigoo | May 21, 2019

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

samasama | @samasama | May 22, 2019

In reply to @tattrigoo "Has anyone had brain radiation as part of their treatment? After a radical cystectomy in January..." + (show)

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

tattrigoo | @tattrigoo | May 22, 2019

In reply to @samasama "Hi, my husband has 33 bladder radiation, no brain radiation. It’s no medical guideline. He had..." + (show)

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.

jimmy2248 | @jimmy2248 | May 22, 2019

In reply to @samasama "Hi, my husband has 33 bladder radiation, no brain radiation. It’s no medical guideline. He had..." + (show)

@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!

Colleen Young, Connect Director | @colleenyoung | May 26, 2019

In reply to @tattrigoo "Has anyone had brain radiation as part of their treatment? After a radical cystectomy in January..." + (show)

@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?

tattrigoo | @tattrigoo | May 27, 2019

In reply to @colleenyoung "@tattrigoo, does your dad have metastases to the brain? You are wise to weigh the benefits..." + (show)

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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