my husband was recently diagnosed with high grade t1. has had 2 surgeries (not in muscle) and just finished bcg treatments. went back in for check with blue light and a small tumor was detected so back to surgery to remove. Mayo has blue light which will detect more tumors than not using. not sure what next step is but will only have bladder removed as a last resort. would love to hear from others optipns for this type of cancer and what you experienced if bladder was removed. thanks
Hi @judith4, I'm inviting fellow members @nvmoen@pameladstone@katydid77 and @sue225 to join this discussion to share their experiences with bladder cancer surgery with or without total removal of the bladder.
Judith, how did you husband do with the BCG treatments?
Thanks Colleen
I would love to connect with others that have gone through surgery having bladder removed.
My husband had no symptoms. I noticed he was losing weight which I thought was from having to close his business due to covid. After Mayo saw his ct scan he was scheduled for surgery 3 days later. Everything happened so fast. He was not a smoker either.
BCG treatments went well. No side effects, just tired for same day as treatment. Had blue light 4 days after last treatment thst showed small tumor which will be removed in a week. Just praying Dr. can find options before bladder removal but want to know what to expect. Again thanks!
My husband was recently diagnosed with T1 high grade bladder cancer (no muscle). Has had 2 surgeries and BCG. New tumor which will be removed next week. Please keep me posted on your journey and I wish you good luck.
my husband was recently diagnosed with high grade t1. has had 2 surgeries (not in muscle) and just finished bcg treatments. went back in for check with blue light and a small tumor was detected so back to surgery to remove. Mayo has blue light which will detect more tumors than not using. not sure what next step is but will only have bladder removed as a last resort. would love to hear from others optipns for this type of cancer and what you experienced if bladder was removed. thanks
Thank u so much Judith for that information. My husband & I will find out if the hospital he has been treated at does have this blue light & if not, we will definitely seek a place that has it.
Thank u so much Judith for that information. My husband & I will find out if the hospital he has been treated at does have this blue light & if not, we will definitely seek a place that has it.
Got my 2nd biopsy report & thank God it hasn’t invaded the muscle wall, but my treatment option is very perplexing. The doctor mentioned treatment with BCG but he isn’t sure if they have a sufficient supply of this drug. He said he will call me in 1-2 weeks to let me know if they are able to get enough to start treatment in about 4 weeks. I’m very upset that I may not be able to be treated with this drug & don’t know where to turn at this point
Great news. My husbands also was not in muscle. He was able to get BCG at Mayo in Phoenix. He has now been asked to he part of a clinical study. We are still deciding weighing the pros and cons. No matter what it is good to know research is being done.
Great news. My husbands also was not in muscle. He was able to get BCG at Mayo in Phoenix. He has now been asked to he part of a clinical study. We are still deciding weighing the pros and cons. No matter what it is good to know research is being done.
My husband, Bruce, decided to get tested to see if he can be accepted into the trial. Mayo is only accepting 4 people so after tests on the 10th we will find out in a few weeks. Of the 4 chosen only 2 will get the drug. Everyone will get bcg but only 2 will get bcg and the drug . The side effects can be bad as this will rev up his immune system and can cause the body to attack organs. So there is a risk to doing this but without it there is no cure.
I have great friends that are very supportive but this is scary and sometimes I just go hide in a room and cry.
I wish doctors would run urine tests as a preventative test as maybe bladder cancer could be caught early. They run tests for prostate cancer but no one mentions bladder cancer.
Do feel good that Bruces doctor at Mayo is looking at all options and he is a surgeon. Bladder removal is our last option as Bruce has a horse shoe kidney and I have heard and doctor confirmed that after bladder removal it can come back in kidney so that is not a cure. Thanks for reaching out. We are all learning together
My husband, Bruce, decided to get tested to see if he can be accepted into the trial. Mayo is only accepting 4 people so after tests on the 10th we will find out in a few weeks. Of the 4 chosen only 2 will get the drug. Everyone will get bcg but only 2 will get bcg and the drug . The side effects can be bad as this will rev up his immune system and can cause the body to attack organs. So there is a risk to doing this but without it there is no cure.
I have great friends that are very supportive but this is scary and sometimes I just go hide in a room and cry.
I wish doctors would run urine tests as a preventative test as maybe bladder cancer could be caught early. They run tests for prostate cancer but no one mentions bladder cancer.
Do feel good that Bruces doctor at Mayo is looking at all options and he is a surgeon. Bladder removal is our last option as Bruce has a horse shoe kidney and I have heard and doctor confirmed that after bladder removal it can come back in kidney so that is not a cure. Thanks for reaching out. We are all learning together
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Yes he scheduled immediately after scope with blue light. Going for Covid test next Sunday and surgery Monday
Hi @judith4, I'm inviting fellow members @nvmoen @pameladstone @katydid77 and @sue225 to join this discussion to share their experiences with bladder cancer surgery with or without total removal of the bladder.
Judith, how did you husband do with the BCG treatments?
Thanks Colleen
I would love to connect with others that have gone through surgery having bladder removed.
My husband had no symptoms. I noticed he was losing weight which I thought was from having to close his business due to covid. After Mayo saw his ct scan he was scheduled for surgery 3 days later. Everything happened so fast. He was not a smoker either.
BCG treatments went well. No side effects, just tired for same day as treatment. Had blue light 4 days after last treatment thst showed small tumor which will be removed in a week. Just praying Dr. can find options before bladder removal but want to know what to expect. Again thanks!
My husband was recently diagnosed with T1 high grade bladder cancer (no muscle). Has had 2 surgeries and BCG. New tumor which will be removed next week. Please keep me posted on your journey and I wish you good luck.
Thank u so much Judith for that information. My husband & I will find out if the hospital he has been treated at does have this blue light & if not, we will definitely seek a place that has it.
Best of luck. Please keep in touch.
Great news. My husbands also was not in muscle. He was able to get BCG at Mayo in Phoenix. He has now been asked to he part of a clinical study. We are still deciding weighing the pros and cons. No matter what it is good to know research is being done.
@judith4, what did you and your husband decide about the clinical trial? How did he do with the BCG treatment? How are YOU doing?
My husband, Bruce, decided to get tested to see if he can be accepted into the trial. Mayo is only accepting 4 people so after tests on the 10th we will find out in a few weeks. Of the 4 chosen only 2 will get the drug. Everyone will get bcg but only 2 will get bcg and the drug . The side effects can be bad as this will rev up his immune system and can cause the body to attack organs. So there is a risk to doing this but without it there is no cure.
I have great friends that are very supportive but this is scary and sometimes I just go hide in a room and cry.
I wish doctors would run urine tests as a preventative test as maybe bladder cancer could be caught early. They run tests for prostate cancer but no one mentions bladder cancer.
Do feel good that Bruces doctor at Mayo is looking at all options and he is a surgeon. Bladder removal is our last option as Bruce has a horse shoe kidney and I have heard and doctor confirmed that after bladder removal it can come back in kidney so that is not a cure. Thanks for reaching out. We are all learning together
Hi Judith,
Can you tell me he name of the drug that will be used in the trial?
Thanks, Tom Clingan
Hi Tom @tclingan25
There are over 30 clinical trials currently open at Mayo Clinic. See this listing from Mayo's clinical trial database:
https://www.mayo.edu/research/clinical-trials/search-results?keyword=bladder%20cancer&studySiteStatusesGrouped=Open%2fStatus%20Unknown&studySiteLocations=#0c1d955fe5494ae68c25c6f1aad733c4
There are 5 that involve BCG
https://www.mayo.edu/research/clinical-trials/search-results?keyword=Bladder%20Cancer%20BCG&studySiteStatusesGrouped=Open/Status%20Unknown
@judith4, is your husband considering one of these?
Tom, do you have bladder cancer?
Yes, I believe one with BCG.