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Muscle‐invasive Poorly Differentiated Squamous Cell Carcinoma, initial diagnosis

3 weeks 1 hour ago #58542 by sara.anne
Vanderbilt is a great choice.....One of our long-time members also had an uncommon bladder cancer and was referred there. She is doing fine!

I kind of like my name too!!! When I was a teen I wanted a nickname so badly but nothing ever stuck. People would think I was from the South with two names.

Loosing a bladder is not what anyone would wish for. But people do adapt and lead full lives. Our president, Cynthia, has an Indiana pouch and unless you knew her well you would never guess.

Keep us posted!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 weeks 2 hours ago #58538 by TnLizzie
I think maybe I am beginning to accept that I really am facing the removal of my bladder. I am certainly old enough to be a "big girl", but I've been hoping there was some mistake in my diagnosis. Sigh.

Thank you, Alan.

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3 weeks 3 hours ago - 2 weeks 6 days ago #58537 by Alan
Vandy and MD Anderson would be very good choices. As Sara Anne said, this is an unusual type and needs the best team!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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3 weeks 13 hours ago #58535 by TnLizzie
sara.anne, thank you so much, and I love your name. My first 2 girls are Sarah and Anna. :)

I live in Memphis, TN, have an appointment with a doctor at Vanderbilt in Nashville, and am looking for a way to send my scans and test results to MD Anderson without having to drive all the way to Houston. But I'm open to other ideas!

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3 weeks 16 hours ago #58533 by sara.anne
So sorry to hear your news. If you are not already, you need to be treated at a center that sees a LOT of bladder cancer cases; yours is not the "common garden variety" bladder cancer. Such places would be university medical schools, National Cancer Institute designated cancer centers.

Here is a very good very brief summary of the types of diversions available (a bag is not the only option)

https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

(If this does not show up as a hyper-link, just copy and paste it in your browser.)

A quick word on the diversions, the ileal conduit (the "bag") is the easiest surgery and often the only one that some urologists who do not treat a lot of bladder cancer are qualified to perform....which is why they recommend it!
The neobladder sounds good at first, but does have some issues; it is a long and difficult surgery and it works much better on males than females.

You have a lot of homework to do.....I recommend that you start with a second opinion at a really good bladder cancer center. If you need suggestions, post your geographical location and I am sure people will have good suggestions for you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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3 weeks 19 hours ago #58532 by TnLizzie
Hi, y'all. I'm a 52yo, Insulin-dependent diabetic female.

7/23 - 9/19: I thought I had a UTI. Antibiotics didn't fix the problem.
9/21: CT scan revealed a bladder mass
9/30: Cystoscopy removed most of the Poorly Differentiated Squamous Cell Carcinoma, muscle‐invasive
10/16: Chest and bone scans showed the cancer has not spread to lungs or bones.
10/24: I was told that 1) I need to start Cisplatin and Gemcitabine
2) my bladder needs to be removed (along with any other organs I'm not using) This would require some way to remove urine. They suggested a bag taped to my side.

Has anyone under the age of 65 been through this? I have so many questions!

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