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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benzino | @benzino | Jul 23 7:06pm

Hi there, I have been getting treated for bladder cancer since 2016. I am now 63 and I go for surgery( turbts ) again in a couple weeks. I have a low grade urethral carcinoma but it keeps coming back faster now. I just had a turbts done 3 months ago. Before it was taking longer to recur, I have had I treatment of chemo after every surgery but it does nothing. I have tried immunotherapy, but it didn't work. I have asked my doctor about other treatments like BCG but have been told it is more used for patients with a higher grade cancer. I don't want to loose my bladder and I don't want it to spread. I don't know what other steps to take. Can anyone help or suggest something I should do.
Benny V

barondog | @barondog | Jul 24 8:31am

I have low-grade bladder cancer also and have been going through BCG infusion therapy and it does work so I’m surprised your doctor doesn’t allow you to do this

Sue, Volunteer Mentor | @sepdvm | Jul 24 8:35am

In reply to @benzino "Hi there, I have been getting treated for bladder cancer since 2016. I am now 63..." + (show)

Hello @benzino.
You have been doing this for a long time and it gets tiresome, along with the constant worry of a worsening situation. My husband opted for a neobladder surgery instead of regular monitoring. I think you should seek out a second opinion in your situation. BCG is a form of local immune therapy and may be an option to another doctor. There has been a shortage of the drug in the recent past and that might have affected your doctor's opinion. If your cancer is really recurring faster, then there should be a good discussion about what else you can do to maintain your bladder. Do you have a larger cancer hospital or University associated hospital within a reasonable distance where you could request a second opinion?

benzino | @benzino | Jul 24 9:45am

In reply to @sepdvm "Hello @benzino. You have been doing this for a long time and it gets tiresome, along..." + (show)

I was first diagnosed at Mt Sinai with a urologist I had a couple surgeries with him and then I went to MSK where I been getting treated ever since. I feel comfortable with the treatments until most recent because I feel there should be more I can do at this time before I get worst and I dont have any answers. I live in NYC I am considering maybe I should get another opinion.

Sue | @swh | Jul 24 9:51am

I will be starting BCG in August. Since there is a shortage, I can't get it to be treated locally. Merck is the only supplier and has been rationing supplies since 2019. They allocate limited supplies to large facilities based on previous purchases. Thus they won't ship to smaller facilities. So I will be making weekly trips to Mayo Rochester (250 miles). Is there a large facility you can go to?

benzino | @benzino | Jul 24 9:51am

In reply to @barondog "I have low-grade bladder cancer also and have been going through BCG infusion therapy and it..." + (show)

Thankyou for your input, it was something I asked my doctor and was told it is for patients with a higher grade cancer

Sue | @swh | Jul 24 10:33am

In reply to @benzino "Thankyou for your input, it was something I asked my doctor and was told it is..." + (show)

We have had several times that a 2nd opinion has been extremely important. My initial path report was low grade non invasive. 2nd opinion at Mayo is high grade T1 (same sample). MSK is a very highly rated facility but your reoccurrence issues for so many years are concerning.

benzino | @benzino | Jul 26 10:51am

In reply to @swh "We have had several times that a 2nd opinion has been extremely important. My initial path..." + (show)

I have been genetically tested and I have the gene for cancer , my whole family has passed from different forms of cancer I am the last man standing. I am considering Mayo Clinic for a second opinion after my up coming surgery in a couple weeks.
I'm hoping to gain more info and resolutions. Thankyou

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