Bladder Cancer/Small cell bladder cancer

My 82 yo grandma was diagnosed with bladder cancer on January 2019. She is other wise healthy. We tried 6 treatments of immunotherapy but as of her last scan the tumor has grown. Due to her size of tumor it has completely obstructed her ir one flow therefore she has bilateral nephrostomy tubes. All blood work looks good and normal kidney function. Our doctors back home In Texas don’t want to operate her due to the size. We are heading over to MAYO in the hopes of having a surgeon give her some good news. Anyone here been through something similar? Her tumor is contained only to her bladder and has not spread according to her latest scan. Any advice is greatly appreciated.

Hello @mcgonzalez36,

I moved your message to the Cancer group where we have several members talking about bladder cancer, and I'd like to connect you with them. I'm so glad you reached out to Connect, and even more glad to learn that your grandma will be coming to Mayo Clinic. Waiting is sometimes the hardest part – it helps to hear from someone who has been there.

While we wait for others to join in here are some discussions which I would encourage you to go through:
– Bladder Cancer: High grade https://connect.mayoclinic.org/discussion/bladder-cancer-1/
– Bladder cancer https://connect.mayoclinic.org/discussion/bladder-cancer-20c2b4/

There are so many kinds of bladder cancer and ways to treat it – do you know what type of bladder cancer your grandma has?

@mcgonzalez36 I, too am glad your grandmother is going to Mayo. Will you or another family member accompany her? Before she goes, think of every possible question you ca. Write them in a notebook with room for answers. Questions like, can radiation be done to shrink the size of the tumor? Is 82years of age too old for surgery? Can she possibly have nephrostomy tubes for a long time? Will the tubes be better than surgery for her and her age? What can she expect in the long run?
(My mother was recently diagnosed with bladder cancer and she had radiation to shrink the tumor since she’s 95 and too old for surgery. She’s doing well so far.)
If you have a smart phone, you might want to use the VoiceMemo function and tape your visit with the doctors. Then you can replay it any time. When is your grandmother going to Mayo?

Hello @mcgonzalez36,

The suggestions that @becsbuddy, offered for your grandmother's appointment at Mayo were very good. I hope that you follow some of those suggestions. On Connect we recently had a posting on tips for an appointment with a new specialist. Here is a link to that post, I think you will it helpful as well. Just click on the link and you can read about How to Get Off to the Best Start with a New Specialist,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Will you post again and let us know how she is doing?

Thank you all for your advice. We will arrive on Monday and have her test done on Tuesday and see her doctor on Wednesday. We’re hoping for good news.

“Small Cell Bladder Carcinoma” words I could not find on the internet. Reading about Small Cell Lung only add to my fears! I feel blessed finding others here. I am pleased to say I am feel Very well 1302 days post treatment. I am praying for you all 💛
Small Cell Carcinoma Survivor Sandie

@tattrigoo my post to you is coming a bit late, sorry. Have you been able to meet with the radiation oncologist yet? What has he said? The nurse or social worker at the radiation center may be able to talk with you about all of your concerns. Try to make an appointment for yourself. My friend is a nurse in radiation oncology and she spends lots of time with the families. I hope all goes well for you and your husband. Becky

Thank you Becky. Yes, we met with the radiation oncologist. We’re going to proceed with Brain MRI and then 3 sessions of whole brain radiation, which consists of daily sessions Monday-Friday for three weeks with a total of 15 treatments. The radiation onc at MDAnderson just finished up a study. Results haven’t been posted yet but he was talking about a reduction in the incidence of brain metastasis for SCBC from 50% to around 14%.

@sandielegal hello. I have been following this group also. It's two years in July that I started this adventure. Last treatment was mass on left adranal. Zapped by radiation. I am on wait and see program. C scan in three months. So good to see your reports.
Prayer and blessings to all in this group. Knowing we have others with the same conditions gives us hope.

Hello Jimmy, Will be pray for you and sending positive vibes, I will go through all the labs and scans in August (6 months in between) Hopefully I can go to annual after that. Finding this site sure helped me ❤️