Looking for Direction on how to make the right treatment choices

Posted by glinda47 @glinda47, Jun 27 9:39am

My husband, a former longtime smoker (quit about a decade ago) was diagnosed with bladder cancer. No muscle invasion but high grade tumor(s). He starts BCG in a few weeks.

He's not one to get involved in his own medical care in terms of finding docs, etc. The uro I found him works in the practice I've been going to for years. Local huge group. I asked my uro about the doc I chose and she said she'd trust any family member with him. That was good enuf for me, I suppose, but he is not a bladder specialist. We are an hour from Hopkins and other university hospitals with reputable programs. I'm kicking myself about this, as after setting up the appt, I found out about blue light technology and perhaps other cutting edge techniques that may have allowed a urologic onc to remove an existing CIS tumor, for example during the cysto or TURBT, which I don't think this guy did. Who knows what else he didn't see.

I didn't realize till our path appt yesterday that the doc wouldn't be instilling the BCG drug. A tech will do it. Whaaaat? In reading, I see that's standard. That terrifies me. I feel like the techs at Hopkins would do a better job and he wouldn't be so sore afterwards with the burning and feelings of pressure to urinate as he was after the TURBT.

I'm truly upset and don't know what to do at this point. I'm thinking let this office do the 1st round of BCG and meanwhile, I'll try to get in at Hopkins for the next cysto with blue light.

Any thoughts would be greatly appreciated.

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@jr1466
Excellent news!!!!!
Can't recall what stage and grade you were, but NP if you don't want to share that.
My husband is T1, High grade..ugh.
Thanks for describing your side effects...we were told they can be cumulative, but we'll see.
I wish we were being treated at Mayo....but our uro gets such great reviews and very smart.
I also read to ask the techs to introduce the BCG slowly...to reduce side effects.
Will def ask about that dosage.

So happy for you, JR! May you remain NED and enjoy this crazy life.

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@glinda47 I’m T1 HG as well. Carcinoma in situ. I am 53M.

The one side effect I neglected to mention was some tissue discharge during weeks 9-10. This was not painful, just a little surprising to see. The biggest ones were roughly the size of my fingernail. Apparently it’s leftover scar tissue from TURBTs that finally let go once the BCG had eaten enough of the bad cells around it.

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Profile picture for jr1466 @jr1466

@glinda47 I’m T1 HG as well. Carcinoma in situ. I am 53M.

The one side effect I neglected to mention was some tissue discharge during weeks 9-10. This was not painful, just a little surprising to see. The biggest ones were roughly the size of my fingernail. Apparently it’s leftover scar tissue from TURBTs that finally let go once the BCG had eaten enough of the bad cells around it.

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@jr1466
Thank you, jr. Very helpful to know about. And certainly makes sense.
Apparently, CIS are always categorized as HG due to their characteristics and behavior, something I'm sure you already know.

Appreciate your responses and again, may your health continue to flourish.

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