Small Cell Carcinoma Bladder (SCCB)

Posted by nvmoen @nvmoen, Sep 13 1:38pm

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…

Liked by swift, jim8086

Hi @nvmoen and welcome to Mayo Clinic Connect. I added your post to the Cancer group (https://connect.mayoclinic.org/group/cancer/) as well as the Kidney & Bladder group. 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?

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@colleenyoung

Hi @nvmoen and welcome to Mayo Clinic Connect. I added your post to the Cancer group (https://connect.mayoclinic.org/group/cancer/) as well as the Kidney & Bladder group. 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?

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

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@nvmoen

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

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Please keep us posted

Liked by bustrbrwn22

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@nvmoen

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

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

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@susan30

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

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@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!

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@susan30

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

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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

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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!

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@nvmoen

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!

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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

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@nvmoen

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!

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@nvmoen my thoughts are with you

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

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@nvmoen

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

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

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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!

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@nvmoen

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!

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

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@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.

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@nvmoen

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!

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@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.

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