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

Hello @daithio. Sorry to hear about your second diagnosis. I’m a bladder cancer “survivor” of 8 years, but until you raised the possibility, didn’t know about the possibility of Small Cell Carcinoma of the Bladder (SCCB). I’m due for my annual cystoscopy in 5 weeks with a new urologist, and I will start my relationship with him through a discussion about SCCB.

We may not find another member of Mayo Connect with your diagnosis, given the fact that it is extremely rare (1-9 cases per million people). So be sure that I will get back to you here after my cystoscopy next June 8 so we can have a discussion about what I have learned. Feel free to get back to me much sooner than that; we can start the discussion as soon as you’re willing. Meantime, my initial research turned up two web sites you may find interesting:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3253713/
http://www.cancernetwork.com/oncology-journal/counterpoint-cystectomy-needed-small-cell-bladder-cancer
As you’ll see, these are classy presentations. I hope you find something in them to ease your concern and suggest a path to treatment and recovery. Let us know how you’re doing and what would be most helpful.
Martin

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@daithio Welcome to Mayo Connect and thank you for sharing your story with us. It is so good that you were proactive and sought a second opinion at Mayo. We wish you well with your treatment plan. We look forward to hearing from you in the future. Teresa

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i am a year past due! I just found this thread on the web and had to connect!
I too had small Cell Bladder Cancer and completed my treatment 29 months ago now 04/24/18 and my heart pounds … pray and hope you are okay!!
I too have felt the need to connect to other such . Nothing you find on the web gives you much hope when you read “Small Cell”

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@sandielegal

i am a year past due! I just found this thread on the web and had to connect!
I too had small Cell Bladder Cancer and completed my treatment 29 months ago now 04/24/18 and my heart pounds … pray and hope you are okay!!
I too have felt the need to connect to other such . Nothing you find on the web gives you much hope when you read “Small Cell”

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I am a 77 year-old male who was recently diagnosed w/ bladder cancer: invasive neuroendocrine carcinoma with small cell (65%) and large cell (35%) features. This is a rare, aggressive, invasive cancer. I have been through two resections and am preparing for a radical cystectomy w/ an excellent, experienced, robotically assisted surgical team. The question I have is the efficacy of undergoing lengthy neoadjuvant chemotherapy prior to the surgery, or proceeding directly to surgery. If there are specialists available for a consult on this rare bladder cancer, i would appreciate knowing how to connect. Thanks

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Welcome @sandielegal and @whitneyvet. I'm glad you found us here on Connect. We look forward to getting to know more about you. Indeed small cell bladder cancer is rare and I'm glad you can connect here with others like @daithio and @predictable

Sandie, You mention that "you're heart pounds". Is this in reference to being alive after treatment or are you experiencing heart problems as a side effect? What treatments did you have?

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@sandielegal

i am a year past due! I just found this thread on the web and had to connect!
I too had small Cell Bladder Cancer and completed my treatment 29 months ago now 04/24/18 and my heart pounds … pray and hope you are okay!!
I too have felt the need to connect to other such . Nothing you find on the web gives you much hope when you read “Small Cell”

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Hi Whitney,
I found this article discussing the pros and cons of neoadjuvant chemotherapy prior to surgery for bladder cancer.
– How does bladder chemotherapy given before surgery change bladder cancer cells? https://atlasofscience.org/how-does-bladder-chemotherapy-given-before-surgery-change-bladder-cancer-cells/

Increasingly neoadjuvant chemo is recommended in bladder cancer, but your cancer team will consider the variables specific to you like the tumor growth patterns and your overall health. Should you wish to seek at second opinion, you can contact Mayo Clinic at one of our 3 campuses in MN, AZ or FL mayocl.in/1mtmR63

Has neoadjuvant chemotherapy been recommended in your case?

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I had 30 radiation treatments and 5 (3day) Chemo session. I suffer from neuropathy in my feet, tinnitus and headaches… but I am really doing great! My heart pounding is A good pound! Yes I am alive!

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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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@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 also have "small cell focal feature" bladder cancer. Chomo Nov 2017 cisplatin/etoposid. chemo didn't work. Had urostomy on 12/12/2017. metasatazied to my lungs and liver. bioposy on liver feb 2018. started Keytruda in Feb. 2018. Had 14 cycles of Ketruda. in nov. 2018 taken of immune theraphy because of bowell problems. dec 2018 c scan shows no change in status , blood work good. 2019 on hold now c scan in Feb. uncologist visit the 30th of Jan. 2019. I am feeling good. Tired out late afternoons evenings. My attitude is good. Just sharing.

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@jimmy2248

I also have "small cell focal feature" bladder cancer. Chomo Nov 2017 cisplatin/etoposid. chemo didn't work. Had urostomy on 12/12/2017. metasatazied to my lungs and liver. bioposy on liver feb 2018. started Keytruda in Feb. 2018. Had 14 cycles of Ketruda. in nov. 2018 taken of immune theraphy because of bowell problems. dec 2018 c scan shows no change in status , blood work good. 2019 on hold now c scan in Feb. uncologist visit the 30th of Jan. 2019. I am feeling good. Tired out late afternoons evenings. My attitude is good. Just sharing.

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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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@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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