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.

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

jackson6 | @jackson6 | Jun 12 5:44pm

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

Hi, I am having the same operation as yourself. I feel so afraid and scared just don't know what to expect and how long will it be before I'm out of pain?

Thank you for any information

dldinsd | @dldinsd | Jun 14 12:12am

New to this bladder cancer. What is TURBT or TUR. I had a non invasive mass removed last week and am going to do 6 treatments of BCG soon. Sounds like this has more reactions than my doctor told me (flu like symptoms). Does everyone go through incontinence and pain after the BCG? Looking for any help please.

mediumride | @mediumride | Jun 14 7:37am

In reply to @dldinsd "New to this bladder cancer. What is TURBT or TUR. I had a non invasive mass..." + (show)

Turbt is an acronym for the surgical procedure for superficial bladder cancer. As far as the pain and incontinence, I have experienced that as well. It didn't start to bother me until my 12th treatment or so. You get bladder contractions and leaking for a few hours after evacuating the medication. Expect that and take necessary measures. Good Luck with your fight.

mediumride | @mediumride | Jun 14 8:42pm

In reply to @mediumride "Turbt is an acronym for the surgical procedure for superficial bladder cancer. As far as the..." + (show)

How was that 1st scope experience? Absolutely TERRIFYING!

Colleen Young, Connect Director | @colleenyoung | Jun 21 1:54pm

In reply to @jackson6 "Hi, I am having the same operation as yourself. I feel so afraid and scared just..." + (show)

Hi @jackson6, I invite you to check out this related discussion that @sue225 started a while back and is still active:
- Radical Cystectomy: Would like to hear the experiences of others
https://connect.mayoclinic.org/discussion/radical-cystectomy/
When is your surgery? How are you coping?

barondog | @barondog | Jun 23 12:39pm

In reply to @dldinsd "New to this bladder cancer. What is TURBT or TUR. I had a non invasive mass..." + (show)

BCG infusion therapy is not fun to go through but in my case it’s held off the cancer. It’s called immunotherapy and your body fights the cancer through your own immune system after you get the infusions good luck and let us know how you’re doing.

talltxlady | @talltxlady | Jun 24 8:17am

In reply to @barondog "BCG infusion therapy is not fun to go through but in my case it’s held off..." + (show)

I agree @barondog. It has kept mine away since the removal in 2021. Burning, painful, and not much fun at all, but 26+ treatments later and I'm still cancer free 🙏 I'll have another cysto in September. I'm hoping if all clear, BCG is done and maybe I'll go to annual cystoscopies. Fingers crossed and I'll keep you all posted.
I do wish I had known from the beginning that it was a 3 year process, but no one told me that. Had an absolutely horrible doctor. Thank God I'm not with him anymore. I'm now at MD Anderson.

Sue | @swh | Jun 24 9:51am

In reply to @talltxlady "I agree @barondog. It has kept mine away since the removal in 2021. Burning, painful, and..." + (show)

Could u elaborate on bcg treatments. We're you able to work or needed to take sick leave? I'm due for 6 weekly treatments. 26 treatments sounds like a lot. Did they get worse over time? What was the treatment schedule?

mediumride | @mediumride | Jun 24 11:36am

In reply to @swh "Could u elaborate on bcg treatments. We're you able to work or needed to take sick..." + (show)

I like to schedule mine early afternoon so I'll take a half day off work for these treatments. Follow the directions, do not deviate.

talltxlady | @talltxlady | Jun 24 5:22pm

In reply to @swh "Could u elaborate on bcg treatments. We're you able to work or needed to take sick..." + (show)

Hi Sue, at that time I wasn't working. I just recently went back to work. Everyone is different. Mine were always scheduled in the afternoon, but that's just when they gave them. Always on a Thursday. Maybe they will offer them on Friday where you receive them. You definitely need that day off.
Honestly, for me they did seem to get a little worse each time.
And I completely agree with the above poster about following the schedule your doctor gives you. Mine were 1 x per week, for 3 consecutive weeks, then a 3 month break, repeat process for 3 years. Finally I had a 6 month break (twice).
I wish you the best throughout your treatments. Please keep us updated on your progress.

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