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Advanced Stage Bladder Cancer

1 month 3 weeks ago #58375 by tlwjaw
I know how you feel. My husband was diagnosed with bladder cancer, muscle invasive, Nov 2018. He did 3 rounds of chemo prior to the surgery to remove the bladder. Everything looked great, even at his surgery follow up appointment everything looked good then the first of April I had to take him to ER for severe abdominal pain, CT showed that there was a tumor on the left adrenal gland that was hemorrhaging. Upon further evaluation they found lesions on his liver as well. So like your Mom, he too started immunotherapy using Keytruda. They did a pet scan about a month after finding the lesions on liver and the cancer had spread even more. It was then in his rib bones along with multiple other areas. The oncologist gave him a year maybe. He spent a week in the hospital every month due to pain and each time they found more lesions. Finally in July the oncologist came in and said obviously the Keytruda is not working and his genetic testing came back with nothing. The dr told us he had 2-3 months at best. My husband was done, he didn't want anymore treatment. He was 57 years old and died 2 1/2 weeks later at home. I know how hard this is for you, especially when it's your Mother, not to mention your father having it as well. 2nd opinion depends on if she is up to that. Sometimes quality of life outweighs quanity as hard as that is to swallow. I finally had to give in to that. I wish you the best and your family is in my prayers.

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1 month 3 weeks ago #58372 by snickted
Thank you, I thought about a 2nd opinion but not sure how to go about doing that with her in the hospital now. She was admitted this past Saturday to insert the drain tubes. I'm not sure how needed they are now ...I just can't understand how the tumor grew so fast. Why is it so rare that hers is doing that? I know these are questions that we can't answer, especially if the doctors can't but doesn't mean I don't want to know. I feel numb and so sad. To make matters worse, my dad has bladder cancer as well. Flip side is his is non-invasive. I never in a million years think she would get it and potentially be gone within a year of diagnosis. I feel so lost and helpless.
Thank you again for listening.

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1 month 3 weeks ago #58371 by Alan
Welcome Snickted,

We are always sorry and sad to read posts like yours. I don't have any real advice as you are aware this is very serious. Tumors usually do not grow that fast thus I agree with what you were told. That doesn't make any difference at this point. Perhaps a second opinion might give you some peace of mind. Plus, you may open up some new or experimental treatment for this type of metastasis. Pat yourself on the back. Caregivers are special and often bear a bigger burden than we can imagine. Feel free to post rants, further questions, good or bad news. Someone will see and respond.

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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1 month 3 weeks ago #58370 by snickted
My mom was diagnosed with muscle invasive bladder cancer in June. They recommended removal of bladder and she wanted a 2nd opinion. Late July her tumor created a fistula with her small intestine - this created a whole set of problems. Her poop was essentially going thru her bladder and it backed up into her kidneys and caused a huge infection. We had to wait for that to clear before they could do surgery. Finally on 8/26, she had surgery to remove her bladder, the fistula and sections of her small intestine. The surgery went great. Then they noticed infection...rounds of antibiotics to try and clear. They noticed what they thought was abscess in the stomach. They also noticed spots on the liver on 9/10. They said not to worry, they thought they were abscesses because of elevated WBC. The pain was so great we took her to the ER on 9/ scan showed the spots on the liver doubled in size and a new one formed. They said cancer can't grow that fast and still went with the abscess theory. They drained the so called abscess and sent samples of the fluid. We got news last night the tumor has spread to her liver and pelvis. I am so upset and wondering if anyone else has experienced anything like this. It blows me away to think that it has doubled in size in roughly 10 days. She is too weak for chemo so we are doing immunotherapy. They think she has 6 months to 1 year to live. Her 5 year prognosis is 11%. I am so upset and sad. I don't know what to do or if there is even anything to do. I appreciate any insight. Thank you.

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