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BCG started urgently.... now very confused

3 weeks 5 days ago #58219 by sara.anne
I have had several cancers including breast cancer as well as bladder cancer . In the case of breast cancer I was told that while I needed to make a decision as to what type of surgery I would have that I could take several weeks to make this decision .. I was told that it needed to be done within two or three months and that this time would make no difference on my prognosis In the case of bladder cancer mine was high grade with CIS and BCG is the treatment of choice for this diagnosis. Even then there was no rush to treatment although it was made clear to me what needed to be done and that I shouldn’t wait months for it .

In your case assuming the diagnosis of low grade is accurate I wonder why the rush to BCG in the first place . I am not sure that discontinuing it while you find a second opinion would be a horrible idea . If indeed this is the correct treatment it could certainly be resumed. Your urologist is going to become sort of your best friend because with this diagnosis you’re going to be seeing him frequently for the next few years and annually forever. You want to be with a doctor that you feel comfortable with and whom you trust.

Please remember that this is just my opinion!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Mohpepper

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3 weeks 5 days ago #58218 by Mohpepper
Sara... thank you. I 100% agree I should have gotten a 2nd opinion but as of right now I’ve gotten myself committed and the only way out is to end the bcg treatment. I’ve been with my company for over 30 years but I can’t just up and change decisions that we spent weeks coming up with. It’s not that easy . Nor financially viable option right now. Too much invested at this point. Wondering if others felt they were ‘pushed’ into making decisions too quickly. Dr telling you that the sooner you start treatment the better chance of the cancer not returning.

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3 weeks 5 days ago #58217 by sara.anne
It is a "puzzlement."

Please remember that we are not doctors here, and what we say should be taken with a grain of salt...or a big tablespoonful.

HOWEVER, I am amazed that your urologist couldn't adapt the BCG treatments to your schedule.
IMHO ten days vs 7 days is nothing. The schedule for BCG is not written in stone and both the schedule and the dosage most commonly used (there are others) are because this was tried and worked. Often doses need to be skipped due to a bladder infection that needs to clear up or due to irritation from the BCG itself.

Secondly, BCG is often NOT given after a diagnosis of low-grade bladder cancer unless it returns. BCG can be highly effective against high grade bladder cancer (rapidly dividing) but not so much against low grade.

I would highly recommend a second opinion at a totally different urology practice....preferably one that has a lot of experience with bladder cancer such as a teaching hospital or cancer center.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 weeks 5 days ago #58216 by Mohpepper
Went to hospital with lower back pain ( only 1 urinary infection ever in life , no other urinary problems) and left 4 days later having gone through being told had early stage bladder cancer, need turbt to remove and test it. Went back for 2nd scrap and 2nd biopsy. Low grade, non invasive, . Dr keeps telling me how ‘lucky’ I am as it was caught accidentally looking at my overies during ultrasound. Stated need 6 week bcg treatment to make sure all cells are dead after the turbt. Ok . My work is traveling and only home every 10 days, dr said no , must be every 7 days can’t be every 10 days. So I scrambled around , working with my employer to figure out what to do and how to do ut( thank god I have amazing employers). I am having to basically take off for 6 weeks with partial pay... but hey this HAS to be done! So after my first bcg treatment last Thursday I got very sick. ( I also list my spleen in an accident years ago so am somewhat immune compromised) . So I call with my side effects... my doc not available.. on call doc says “ what I’m going through not from bcg. WHAT!!!! I was pretty damn healthy prior to this , felt fine day of bcg , now feel like death warmed over... but not bcg!!!! So I said to hell with that went back to hospital. They had me in and out within 43 minutes claiming nothing shows up in any of the tests. Anyone else get blood, urine, and exrays taken , looked at , and released from any facility in 53 minutes from time you walked in to time you walked out???? Yeah I didn’t think so. Monday called MY doc , nurse says never had anyone claim dizzy, mental confusion, along with nausea, and stomach pain. Must be something else but we can skip next treatment....WAIT...WHAT!!! Skip treatment... I gave up 6 weeks of work... money lost and company doing without my being there to run what I run because it MUST be every 7 days ... but now... ‘ oh well we will just skip one!!!!!
I’m so angry and confused and now suspicious of these damn doctors I’m debating saying to hell with it and just let the cancer run it’s course. But I don’t want to die. And dr also never said anything about more treatments after the first 6 but everything I read says it’s years if it. My company went way out on this one... I can’t expect them to ever do this again. I’m just at the end of my rope... and 2nd round bcg day after tomorrow??? Thanks for letting me vent

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