My 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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mediumride | @mediumride | Sep 15, 2023

Thank-you for sharing that. Sounds like that really messed your summer. Congrats on being Clear, you certainly deserved some good news after all that. Can I ask you how long was it between your last all clear scope and the nasty reoccurance? Or, was it 5 years? Your story makes me wonder if there would have been value added in seeing an oncologist before that happened to you like Donsunlover is talking about.

cairo20 | @cairo20 | Sep 15, 2023

In reply to @bjledbetter "I was first diagnosed with low grade non invasive bladder cancer in April 2011. After BCG..." + (show)

Finally another woman who has gone through what I have….
I had symptoms similar to a bladder infection-UTI-three years ago. Went through the testing, but nothing was found.
Last year I had the same symptoms-burning. frequency, blood in my urine; this time I was diagnosed with high grade invasive (through the muscle wall) bladder cancer.
I was seeing a local urologist, but couldn’t get in to one who could do the procedure I needed done which was similar to yours. So a year ago September, I went to the Mayo clinic.
I had my ovaries, tubes, all pelvic nodes and bladder removed. They also took 18 inches of ileum to fashion a new bladder, a neo bladder.
I had just about every complication:
Massive infection,
Intestinal blockage,
Blockage from the kidney through the ureter, and now
Lymphedema in one leg.
The new bladder functions more like a funnel than a Reservoir. And I live with terrible incontinence. -12 pads a day.
I go back every three months for a check up.
No return of the cancer has been found so far.
But I was wondering if any other woman has the same issues as I. Someone who can share how they get through the days…

Sue, Volunteer Mentor | @sepdvm | Sep 20, 2023

Even at the Mayo Clinic Rochester, urologists manage care of bladder cancer. We had to request an appointment with an oncologist there, and after sharing his opinion, referred my husband back to the Urology team. Some places have Urological Oncologists but we have not experienced that in the 4 years at Mayo. As a medical professional, I have to question the idea that urologists are doing procedures for financial reasons. The frequent cystoscopies allow for early diagnosis of recurrence and successful treatment. If blood tests were as accurate as cystos, I believe they would be more commonly used. I don't have the information to justify that thought though. My husband had a radical cystectomy with neobladder almost 2 years ago and had many complications but is now stable and NED on last scans. I wish everyone the same results in their battles with urologic cancer. Be strong and advocate for your own medical care.

Colleen Young, Connect Director | @colleenyoung | Oct 2, 2023

@mediumride, how are you doing? Have you started the next 3 maintenance BCG treatments?

mediumride | @mediumride | Oct 2, 2023

In reply to @colleenyoung "@mediumride, how are you doing? Have you started the next 3 maintenance BCG treatments?" + (show)

Yes...I have 2nd one tomorrow. Last week's treatment went very smooth with no issues. It's funny what you can get used too. Of course I've heard of people who need to use a catheter just to go #1. Thanks for
asking btw.

barondog | @barondog | Apr 1 10:32am

I have had non muscle invasive bladder cancer for two years now. My big mistake was not have my prostate removed 16 years ago when I have radiation seed implants. Last year I had a Turp to allow a better urine flow which took out some of the seeds I had implanted years ago. Now after going through BCG treatments, my urinary canal is so sensitive to the BCG and just concentrated urine that I get consistent burning and nothing kills the pain. My Spyker was so damaged in removing some of the lesions on the bladder wall so I am now incontinent on top of it all. Now I am on my second BCG therapy and if this does not work I will get another advanced choice of treatment.

chrissiebee | @chrissiebee | Apr 8 9:15pm

In reply to @mediumride "Well I was curious about that blood test for detecting bladder cancer and I don't see..." + (show)

https://www.natera.com/oncology/signatera-advanced-cancer-detection/patients/bladder-cancer/#:~:text=Each%20time%20you%20get%20a,be%20interpreted%20by%20your%20doctor.

cairo20 | @cairo20 | Apr 8 9:18pm

In reply to @cairo20 "Finally another woman who has gone through what I have…. I had symptoms similar to a..." + (show)

Jan 2024 addendum:
Quarterly check up chest CT found I had a PE Not sure of its origin so on blood thinners for the rest of my life with a medication price of $554 per month.
Still no fellow woman who has something similar???

Colleen Young, Connect Director | @colleenyoung | Apr 13 11:41am

In reply to @cairo20 "Jan 2024 addendum: Quarterly check up chest CT found I had a PE Not sure of..." + (show)

@cairo20, thank goodness the pulmonary embolism (PE) was found. If you'd like to connect with others who have experience with PE, see this related discussion:
- Looking for others with Pulmonary embolisms
https://connect.mayoclinic.org/discussion/looking-for-other-with-pulmonary-embolisms/
How were the CT scans other than the PE?

chrissiebee | @chrissiebee | Apr 15 1:21pm

In reply to @cairo20 "Jan 2024 addendum: Quarterly check up chest CT found I had a PE Not sure of..." + (show)

I had a blood clot in my leg after surgery for a metastasis back in 2002. I had to begin taking blood thinners, first Coumadin for a number of years and then moved on to Eliquis when that became available to me. Eliquis is much easier than taking Coumadin. My insurance (Medicare Advantage Plan) pays for my meds with just a small co-pay at times. I don't have the cost of the Eliquis handy but I believe it's over $500 a month. If you'd like, I can find the records and get back to you more exact. Coumadin was a lot less expensive but you must go for monthly blood draws. If you have to pay out of pocket for Eliquis, it might be worth looking into Coumadin. Again my health insurance pays for my Eliquis.

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