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

Posted by nvmoen @nvmoen, Sep 13, 2020

In April 2020, in my 50’s, I had a TURBT performed and the tumor (6cm) removed. Pathology revealed 95% small cell urothelial carcinoma and 5% invasive muscularis propria. Bladder tumor metastasis in the liver (2.4 cm). Under went 4 cycles of chemotherapy carboplatin and etoposide. Most recent MRI and PET scans show liver tumor reduced to 1.3 cm and am scheduled for ablation of that tumor. PET scan showed no metabolic activity of the tumor and no new tumors. But did experience gross hematuria 5 days ago, one time, unknown why. Anyone else have similar experiences? Trying to decide what’s next etc...

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Colleen Young, Connect Director | @colleenyoung | Sep 13, 2020

Hi @nvmoen and welcome to Mayo Clinic Connect. I'm tagging fellow members who have experience with small cell carcinoma of the bladder, like @tattrigoo @samasama @jimmy2248 @sandielegal @marycedroni @whitneyvet and @predictable. You can read more of their posts in this discussion:

- Bladder Cancer/Small cell bladder cancer https://connect.mayoclinic.org/discussion/small-cell-bladder-cancer/

While the PET scan showed no metabolic activity of the tumor and no new tumors (great news), I can understand that you're concerned about this recent apprearance of blood in the urine (hematuria). Mayo Clinic listed quite a few possible causes here:
https://www.mayoclinic.org/diseases-conditions/blood-in-urine/symptoms-causes/syc-20353432

Have you had an appointment with your oncologist since the hematuria incident? Any chance you may have a bladder or kidney infection?

nvmoen | @nvmoen | Sep 15, 2020

In reply to @colleenyoung "Hi @nvmoen and welcome to Mayo Clinic Connect. I'm tagging fellow members who have experience with..." + (show)

Just had a cystoscope yesterday and they found a 1 cm tumor in my bladder. Having a TURBT in a few days.

susan30 | @susan30 | Sep 18, 2020

In reply to @nvmoen "Just had a cystoscope yesterday and they found a 1 cm tumor in my bladder. Having..." + (show)

Please explain what cystoscope is....how performed ? What were symptoms that you had leading to this? Thank you for info regarding.

Becky, Volunteer Mentor | @becsbuddy | Sep 18, 2020

In reply to @susan30 "Please explain what cystoscope is....how performed ? What were symptoms that you had leading to this?..." + (show)

@susan30 As a retired nurse, I can tell you about the cystoscope, but I can’t explain the symptoms that led to it’s use. A cystoscope is an instrument used by (mostly)urologists to look inside the bladder. An local anesthetic is given to the patient and then the cystoscope is inserted into the bladder via the urethra. The urologist can the view the inside of the bladder. Hope this helps!

Martin Jensen, Volunteer Mentor | @predictable | Sep 18, 2020

In reply to @susan30 "Please explain what cystoscope is....how performed ? What were symptoms that you had leading to this?..." + (show)

As a bladder cancer survivor, @susan30, I can add a little more information about the cystoscope. Becky (@becsbuddy) has given you a good foundation to understand it. I have had more than a dozen cystoscope procedures over the past few years since I had a dozen papillary tumors removed from my bladder lining. Scanning the inside of the bladder for those small tumors required a good lens at the end of the instrument along with a good light to see absolutely everything all around. The business-end of the cystoscope is quite small and doesn't cause me serious pain, although it pinches a little as it moves through the bladder sphincter (valve). Once inside the bladder, images from the cystoscope were displayed on a computer screen that gave me a 10-minute documentary on my bladder's lining.

In addition to the anesthetic, you'll have the opportunity to choose an antibiotic applied to prevent bacterial infection. I have taken great interest in that selection, since some popular antibiotics can cause problems, and my urologist has taken the time to discuss the issues and help me make the safest choice. I'm now "scoped" once a year without fail to make sure no new tumors "take root." My 2020 urologist visit is coming up. Martin

nvmoen | @nvmoen | Sep 19, 2020

Had my TURBT Thursday, today is Saturday, sent me home with a catheter (hate those things) waiting for biopsy report. Scheduled for another CT scan. The doc said that he couldn’t get all of the tumor as it was too close to the ureter and he didn’t want to risk damaging it. Argh, that’s good and bad because now the tumor is still inside. Talking about doing radiation now ... argh. Already went through 4 cycles of chemo and was in remission (so I thought) for 28 days before I started peeing blood again and that was due to this current tumor. When am I going to get some good news. Small Cell Bladder Cancer is so rare and fast growing no doctor seems to know what to do!

Martin Jensen, Volunteer Mentor | @predictable | Sep 19, 2020

In reply to @nvmoen "Had my TURBT Thursday, today is Saturday, sent me home with a catheter (hate those things)..." + (show)

I immediately thought that your situation is tailor-made for a second (or third) opinion, @nvmoen. If that tumor caused blood in your urine, you'd want to know whether it is attached to the ureter rather than "too close." Can you arrange for an expert urologist or oncologist with urology experience to examine you and provide either confirmation or a different therapy? Martin

nvmoen | @nvmoen | Sep 19, 2020

I have a ct scan scheduled for next week. I’ll let y’all know.

bustrbrwn22 | @bustrbrwn22 | Sep 20, 2020

In reply to @nvmoen "I have a ct scan scheduled for next week. I’ll let y’all know." + (show)

@nvmoen good luck with your ct scan. Sending positive thoughts your way. Please keep us posted

nvmoen | @nvmoen | Oct 2, 2020

Had my ct scan on September 28th and it showed that my liver tumor went from 1.3 cm on August 13th to 4.5 cm. That’s a fast growing turd of a tumor. I saw a surgeon-oncologist and we did an ablation yesterday and took my gallbladder out too. There were two benign polyps in there so with a tumor in my liver and the ablation taking the gallbladder out seemed to be a no brainer. Next step is radiation therapy set for October 12th to kill the leftover tumor chips in the bladder. Seems like it’s always something. Still in the fight to win!