Immune therapy did not work at all, been thru two years chemo, and that left me clear for only a year. Dye biopsy surgery will reveal if it’s still in situ, as it has always been thus far.
Hi @cairo20, I'm tagging @kathrynmc@sandielegal@pameladstone, who are women with experience with bladder cancer. I'm not sure if any of them had neobladder surgery or if they have experience with incontinence to share.
I'm sorry that you're still dealing with significant incontinence. Daytime incontinence can take 6-12 months to improve. Were pelvic floor exercises suggested for you?
Yes
Started them immediately after catheter was removed. Seeing a 2nd Physical Therapist who specializes in Pelvic Floor exercises.
I’m still hopeful but it’s been 6 months and it doesn’t seem to make any difference 😞
@bruceb, as you alluded to, your treatment options will depend on several factor like if it is in situ or not, treatments you've already had, the grade of the cancer, when it comes back, your preferences, etc.
The good news is that there are a number of options available from surgery to immunotherapy and more. You may find this article helpful to prepare for your upcoming conference with your cancer team:
- Treatments for recurrent bladder cancer https://cancer.ca/en/cancer-information/cancer-types/bladder/treatment/recurrent
What diagnostic tests have you had or will be having?
Any women out here here with neobladder surgery? Underwent this procedure in September and have horrible case of incontinence! 6 months out and still go through 12 pads a day 😞
Hi @cairo20, I'm tagging @kathrynmc@sandielegal@pameladstone, who are women with experience with bladder cancer. I'm not sure if any of them had neobladder surgery or if they have experience with incontinence to share.
I'm sorry that you're still dealing with significant incontinence. Daytime incontinence can take 6-12 months to improve. Were pelvic floor exercises suggested for you?
When you say the cancer was controlled with TUR procedures, how many years? And how many TURs? My husband just had his second TUR- removed a dozen small high grade surface tumors. Starting second round of CBG. Dr said 50% chance of stopping cancer…. But it didn’t stop the first time…. So just want to know more what to expect.
My husband had multiple TUR procedures over a two year time period and at every recheck there was another spot to either watch or biopsy. While I know of others who have done this for over 10 years as an acceptable method of controlling their bladder cancer, that was not how my husband wanted to live his life....hence the neobladder surgery. Perhaps with a low grade tumor they would not reappear with such frequency? When tumors returned while on BCG maintenance therapy, he was considered a BCG failure so no more. Good luck to you and your husband.
We have learned via my husband's highly aggressive muscle invasive bladder cancer that a lot depends on how aggressive the tumor is, and obviously progression. The superficial tumors seem to be well controlled for even years with repeated TUR procedures. My husband had BCG treatments which is a type of immunotherapy infused into the bladder regularly, but his tumor was resistant. Oral Keytruda was also tried but failed. Gemcitabine infusion into the bladder was offered. After 3 years of repeated Cancer cells and TUR procedures at MAyo Clinic Rochester, he chose to have a radical cystectomy with neobladder formation. It's been a tough road with complications, but currently cancer free. I hope you catch yours early and can continue the minimally invasive procedures to control it. Good luck.
Any women out here here with neobladder surgery? Underwent this procedure in September and have horrible case of incontinence! 6 months out and still go through 12 pads a day 😞
We have learned via my husband's highly aggressive muscle invasive bladder cancer that a lot depends on how aggressive the tumor is, and obviously progression. The superficial tumors seem to be well controlled for even years with repeated TUR procedures. My husband had BCG treatments which is a type of immunotherapy infused into the bladder regularly, but his tumor was resistant. Oral Keytruda was also tried but failed. Gemcitabine infusion into the bladder was offered. After 3 years of repeated Cancer cells and TUR procedures at MAyo Clinic Rochester, he chose to have a radical cystectomy with neobladder formation. It's been a tough road with complications, but currently cancer free. I hope you catch yours early and can continue the minimally invasive procedures to control it. Good luck.
When you say the cancer was controlled with TUR procedures, how many years? And how many TURs? My husband just had his second TUR- removed a dozen small high grade surface tumors. Starting second round of CBG. Dr said 50% chance of stopping cancer…. But it didn’t stop the first time…. So just want to know more what to expect.
We have learned via my husband's highly aggressive muscle invasive bladder cancer that a lot depends on how aggressive the tumor is, and obviously progression. The superficial tumors seem to be well controlled for even years with repeated TUR procedures. My husband had BCG treatments which is a type of immunotherapy infused into the bladder regularly, but his tumor was resistant. Oral Keytruda was also tried but failed. Gemcitabine infusion into the bladder was offered. After 3 years of repeated Cancer cells and TUR procedures at MAyo Clinic Rochester, he chose to have a radical cystectomy with neobladder formation. It's been a tough road with complications, but currently cancer free. I hope you catch yours early and can continue the minimally invasive procedures to control it. Good luck.
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Immune therapy did not work at all, been thru two years chemo, and that left me clear for only a year. Dye biopsy surgery will reveal if it’s still in situ, as it has always been thus far.
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1 ReactionYes
Started them immediately after catheter was removed. Seeing a 2nd Physical Therapist who specializes in Pelvic Floor exercises.
I’m still hopeful but it’s been 6 months and it doesn’t seem to make any difference 😞
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Hug
1 ReactionHow were the cancer cells detected?
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1 Reaction@bruceb, as you alluded to, your treatment options will depend on several factor like if it is in situ or not, treatments you've already had, the grade of the cancer, when it comes back, your preferences, etc.
The good news is that there are a number of options available from surgery to immunotherapy and more. You may find this article helpful to prepare for your upcoming conference with your cancer team:
- Treatments for recurrent bladder cancer https://cancer.ca/en/cancer-information/cancer-types/bladder/treatment/recurrent
What diagnostic tests have you had or will be having?
-
Like -
Helpful -
Hug
1 ReactionHi @cairo20, I'm tagging @kathrynmc @sandielegal @pameladstone, who are women with experience with bladder cancer. I'm not sure if any of them had neobladder surgery or if they have experience with incontinence to share.
I'm sorry that you're still dealing with significant incontinence. Daytime incontinence can take 6-12 months to improve. Were pelvic floor exercises suggested for you?
My husband had multiple TUR procedures over a two year time period and at every recheck there was another spot to either watch or biopsy. While I know of others who have done this for over 10 years as an acceptable method of controlling their bladder cancer, that was not how my husband wanted to live his life....hence the neobladder surgery. Perhaps with a low grade tumor they would not reappear with such frequency? When tumors returned while on BCG maintenance therapy, he was considered a BCG failure so no more. Good luck to you and your husband.
-
Like -
Helpful -
Hug
2 ReactionsAny women out here here with neobladder surgery? Underwent this procedure in September and have horrible case of incontinence! 6 months out and still go through 12 pads a day 😞
-
Like -
Helpful -
Hug
3 ReactionsWhen you say the cancer was controlled with TUR procedures, how many years? And how many TURs? My husband just had his second TUR- removed a dozen small high grade surface tumors. Starting second round of CBG. Dr said 50% chance of stopping cancer…. But it didn’t stop the first time…. So just want to know more what to expect.
We have learned via my husband's highly aggressive muscle invasive bladder cancer that a lot depends on how aggressive the tumor is, and obviously progression. The superficial tumors seem to be well controlled for even years with repeated TUR procedures. My husband had BCG treatments which is a type of immunotherapy infused into the bladder regularly, but his tumor was resistant. Oral Keytruda was also tried but failed. Gemcitabine infusion into the bladder was offered. After 3 years of repeated Cancer cells and TUR procedures at MAyo Clinic Rochester, he chose to have a radical cystectomy with neobladder formation. It's been a tough road with complications, but currently cancer free. I hope you catch yours early and can continue the minimally invasive procedures to control it. Good luck.
-
Like -
Helpful -
Hug
8 ReactionsConference with doctors upcoming. Interested in treatment options for this situation, especially if cancer is no longer in situ