Bladder Cancer Story

Posted by mediumride @mediumride, Sep 12, 2023

I started treatment for low grade non-aggressive bladder cancer in Nov. of 2021. I'm a 56 y.o. male. I hid the symptoms from everyone for many years and finally decided to face the problem and see what I was up against. That first Scope was terrifying but when he said it could be removed I was relieved. Got Lucky. I had TURBT done the next day and wore a catheter for 3 days. Then the scope comes every (3) months. The following year in August there were two small tumors found. The Doctor nipped them out thru the scope right there and then. They then started me on 6 BCG's, and then (3) week break, and then (3) maintenance BCG's. All of these (9) treatments were pretty well tolerated. I had a clear scope following that and then in March of 2023, another small Tumor was seen. They nipped that out thru the scope again. I then received 3 more BCG treatments and every one of them burned and made my bladder very angry for a few hours after getting rid of the medication. The urgency was severe and I had to wear a diaper because there was no controlling it. I was fine after 4 or 5 hours. The next two scopes have been clear and I'm started 3 more maintenance BCG's soon. They said I could get half the dose to ease the symptoms I've been getting but I just assume get the full load and benefit from it. Some people they say can be sensitive to the Meds. I did not know this at first but it's Tuberculosis Vaccine. I expect to continue this treatment plan into 2025 they are telling me. Hoping for no more re-occurrences. I feel for all that are going thru this kind of stuff. Good Luck with your battles everyone.

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Hi @mediumride, we were diagnosed at the same time. I am a 54yo female that was dx 11.15.21. I have hi grade non bladder invasive papillary cancer. I've had approximately 21 or 22 treatments to date and it seems that my tolerance to the BCG (tuberculosis) treatments gets less and less. I can remember the first 6+ treatments were a breeze. I remember thinking what is the big deal, this doesn't hurt HA!
I go on the 20th for my cystoscopy and am not looking forward to it. My husband is driving me and this time I asked my doctor to prescribe me something to help me relax. I'm praying all is good, but sure have been having lots of symptoms. We shall see.
You hang in there. We are all very strong people to be going through all of this.
This group definitely helps me knowing I am not alone. It feels good to know I can come here and there are people going through the exact same thing who understand. Stay strong friends and keep on fighting the good fight every moment.

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@talltxlady

Hi @mediumride, we were diagnosed at the same time. I am a 54yo female that was dx 11.15.21. I have hi grade non bladder invasive papillary cancer. I've had approximately 21 or 22 treatments to date and it seems that my tolerance to the BCG (tuberculosis) treatments gets less and less. I can remember the first 6+ treatments were a breeze. I remember thinking what is the big deal, this doesn't hurt HA!
I go on the 20th for my cystoscopy and am not looking forward to it. My husband is driving me and this time I asked my doctor to prescribe me something to help me relax. I'm praying all is good, but sure have been having lots of symptoms. We shall see.
You hang in there. We are all very strong people to be going through all of this.
This group definitely helps me knowing I am not alone. It feels good to know I can come here and there are people going through the exact same thing who understand. Stay strong friends and keep on fighting the good fight every moment.

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I agree it's good to able to share the experiences here. Thanks for the reply. Good Luck on your next Cystoscopy.
I will say I haven't looked forward to a single one of them yet.

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I am confused about your treatment or what sounds like lack of treatment with chemotherapy. Also, there is a DNA blood test by Natera that can be used instead of Cystoscopy, Don't understand why anybody would want to go through that procedure instead instead of a simple blood test.

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@donsunlover

I am confused about your treatment or what sounds like lack of treatment with chemotherapy. Also, there is a DNA blood test by Natera that can be used instead of Cystoscopy, Don't understand why anybody would want to go through that procedure instead instead of a simple blood test.

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Huh...we'll, that's the treatment that this urologist is recommending. It's not something I "want". Maybe the reason why they do these procedures is because they get paid for them. My Dad's PC Doctor told him he doesn't like this particular group of Doctors because they tend to do unnecessary treatments just to get paid. He also said that typically that's how the Urology business operates. That does not sound good for anyone.

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@donsunlover

I am confused about your treatment or what sounds like lack of treatment with chemotherapy. Also, there is a DNA blood test by Natera that can be used instead of Cystoscopy, Don't understand why anybody would want to go through that procedure instead instead of a simple blood test.

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Well I was curious about that blood test for detecting bladder cancer and I don't see anything on the American Cancer Society website or Mayo Clinic even hinting it exists.

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@mediumride

Huh...we'll, that's the treatment that this urologist is recommending. It's not something I "want". Maybe the reason why they do these procedures is because they get paid for them. My Dad's PC Doctor told him he doesn't like this particular group of Doctors because they tend to do unnecessary treatments just to get paid. He also said that typically that's how the Urology business operates. That does not sound good for anyone.

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First, you have cancer and should have an oncologist inform you of treatments available. I had stage II invasive bladder cancer and was treated with a combination of Gemzar and Cisplatin. At the same time, on my own, I took 5-6 grams of 95% curcuminoids with black pepper extract supplements. They make chemotherapy kill cancer better and reduce side effects.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699625/https://pubmed.ncbi.nlm.nih.gov/34347326/

Instead of cystoscopy use Signatera, a blood test that looks for your specific cancer recurrence.
Google "recurrance test natera" to get connected. And it's cheap.

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@mediumride

Well I was curious about that blood test for detecting bladder cancer and I don't see anything on the American Cancer Society website or Mayo Clinic even hinting it exists.

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Mayo clinic has a more comprehensive test of their own called Galleri, but it costs $950 out of pocket. I believe American Cancer Society is years behind in accepting modern medicine. They wait for FDA approve and don't care if you die while waiting. How many people died because FDA waited to approve Covid-19 vaccine, and then only under Presidential order.

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@mediumride

Well I was curious about that blood test for detecting bladder cancer and I don't see anything on the American Cancer Society website or Mayo Clinic even hinting it exists.

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Suggest you talk to responsible doctors or trusted websites that are dealing with your specific issue.
Please take responsibility for your own treatment; IT'S YOUR LIFE.
I don't understand why you aloud a urologist to treat your cancer(not their primary training or responsibility).
Sorry you have suffered because of it.

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Thanks for your input here. I'm Picking up what you are laying down. I have considered getting other opinions on my condition. It's funny how I just found some info in a forum where they were saying that with low grade/low stage bladder cancers are typically monitored and treated by urologists. Oncologists usually only treat the disease only after it becomes invasive. Why is that? I've just been ignorant and have been going with the flow with this treatment plan I've been on. I've met a couple people in the waiting room who are going through the same thing, there are probably many. This place is like an assembly line of patients, very busy all the time. Cha Ching, Cha Ching....

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@donsunlover

First, you have cancer and should have an oncologist inform you of treatments available. I had stage II invasive bladder cancer and was treated with a combination of Gemzar and Cisplatin. At the same time, on my own, I took 5-6 grams of 95% curcuminoids with black pepper extract supplements. They make chemotherapy kill cancer better and reduce side effects.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699625/https://pubmed.ncbi.nlm.nih.gov/34347326/

Instead of cystoscopy use Signatera, a blood test that looks for your specific cancer recurrence.
Google "recurrance test natera" to get connected. And it's cheap.

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I was first diagnosed with low grade non invasive bladder cancer in April 2011. After BCG and repeated cystoscopes I was clear for 5 years. Then in April of 2023 it came back with a vengeance. That’s when the urologist referred me to an oncologist. It was both aggressive and invasive. It had invaded the muscle. After several treatments of Gemzar and Cisplatin, I had a radical cystectomy 3 weeks ago. They removed my bladder, uterus, ovaries, pelvic lymph nodes, and the lining to the vagina. Not fun. Pathology showed no residual cancer cells and I am now 100% cancer free!!

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