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My Bladder Cancer Story
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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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?
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.
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1 ReactionBCG 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.
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1 ReactionHi @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?
How was that 1st scope experience? Absolutely TERRIFYING!
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.
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2 ReactionsNew 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.
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1 ReactionHi, 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
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1 ReactionI 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.
@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?
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