Small cell carcinoma of the bladder (SCCB): anyone else?

@nvmoen I am so sorry to hear. Please keep us posted as you are in our thoughts and prayers!

@jim8086 . Good morning. I also have small cell...etc of bladder. 3yrs ago same chomo then cycomoy dec. 2017. Mets to liver and lungs
Following spring 14 rounds of Keytruda, immunotherapy. 2019 left adrenal zapped.with radiation. Numerous c scans throughout my adventure. No new activity since radiation. I'm on a watch and see program. Tentative meeting with oncologist in November. Blessed to share your positive move with this mayo clinic blog
It has Really helped me navigate this rare condition.

@nvmoen, I see you started radiation a couple of days ago. How are you doing? Are you having daily radiation? Do you have far to travel for treatment?

That's a lot of questions and you may be tired from treatment and travel. Don't feel obliged to respond.

Almost finished with daily radiation treatments. Scheduled to finish Dec 15th. Looking forward to that but more importantly remission. My last CT scan with contrast showed that the treatments have been working. My oncologist is very pleased as am I. I’ll have under gone 32 radiation treatments. Still doing immunotherapy, once every 3 weeks until after radiation is completed.

Great news, @nvmoen. You're almost at the finish line for daily radiation treatments. I'm sure you'll be grateful not to have to make the daily trip. More importantly, treatment appears to be working.

Have you experienced any side effects from radiation?

Hello @nvmoen

As it has been a while since you last posted about nearing the end of the radiation treatments, I was wondering how you are feeling now. Have you finished with the immunotherapy as well?

Here a message and question from the Netherlands. My father was in January 2021 diagnosed with small cell carcinoma of the bladder (SCCB), rare and aggressive. With metastases to the liver, lymph nodes and in his blood, his treatment is palliative.

Chemotherapy (carboplatin/etoposide) reduced the cancer (tumor in liver from 11cm to 6cm). After several chemo’s, he now has a ‘chemofree interval’. Results from the scan today showed a slight increase of tumor in liver. Oncologist advises not to start chemo again yet. She was satisfied with the scan and good blood results.

My question: are there any new developments in SCCB? Studies, experiments, immunotherapy, a new medicine? It is such a rare form, which results in scarce data. I can’t find much information, perhaps in other countries there is..

Thank you in advance for your answer.

Hi @m1985 from the Netherlands and welcome to Mayo Clinic Connect. @jimmy2248 can share more about his experiences with immunotherapy and SCCB.

M1985, you're right that there is less information about small cell bladder cancer. What options has your dad's oncologist suggested?

Thank you so much for your fast response. The chemotherapy carboplatin/etoposide was presented as the only option (no radiation, ablation or other solutions). This was acknowledged by another hospital in the Netherlands. At first we were told immunotherapy was no option with 'this type'. Later on I asked another oncologist in a webinar. He said immunotherapy could be an option if the tumor shows specific DNA differences with high mutational burden (experimental study). Our oncologist confirmed. I'm curious for experiences of @jimmy2248 with immunotherapy.
I also read something about Keytruda?

I hope to find some additional information here (experiences from others) which I can discuss with my dad's oncologist.

I’ll start by admitting that I’m going to try and give the full picture here, but some of the facts are a little confusing with my limited knowledge. My stepmom was originally diagnosed with bladder cancer and they operated and removed the mass immediately upon finding it. However after further testing they discovered that the cancer had spread to other areas and she was given the diagnosis of stage 4 small cell carcinoma and the cancer had metastasized in her bones. This is where my confusion comes from as traditionally small cell is in relation to the lungs and bladder but her diagnosis was less specific and we can’t definitively state that the small cell is specific to the bladder. If anyone has had a similar diagnosis and can provide insight or clarity it would be much appreciated.

Further, we were told that she had 10 months and the cancer would likely become resistant to chemo and that could happen as early as after 4-5 rounds of chemo. However, she was at her lowest health wise before starting chemo and during the first two rounds. After several rounds of chemo she is doing incredible, she’s able to get around, cook, clean, go shopping on her own, etc. Months prior she was hardly about to get out of bed, so it’s hard to believe she is terminal and that time is running out.

My questions are, is it possible that there is more hope than we had with the original prognosis? Are there people with similar diagnoses that beat the system? Second, outside of the standard treatments of chemo is there any more we can do to extend these highlights and good moments for her?

Thank you for taking the time to read and providing any suggestions or feedback or clarity you may have.