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Looking for Direction on how to make the right treatment choices
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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May thanks fos, for sharing.
I've read many positive stories about this option.
May you continue to do well.
I had surgery to remove noninvasive, multiple spots of bladder cancer. With age considered, it was classified as High Risk. I had the requisite two surgeries to remove the actual cancer. Then there is the follow-up treatment.
The treatment has been a long road, and there are some variations in what different oncologists prescribe. If you aren't comfortable with the treatment offered and it sounds as if you don't really feel you are in the best place, then I think the only thing that would stop you from getting a second opinion is whether your insurance covers it. This way, if the second opinion supports what you are doing, you can relax, and if they offer a different plan, then you have a choice to make. In my personal opinion, I would not want to spend all the time of the treatments wishing I knew if it was the best one, etc. I did quite a bit of research ahead of time and was given the treatment I had hoped for between the two major choices: BCG or GEMDOCE (gemcitabine/docetaxel). I have been on the GEMDOCE protocol for High Risk.
As far as technicians administering the chemo into the bladder - that is normal. There will probably be regular check-ups (for me every six months) with the urological oncologist who ordered the chemo.
As critical as the chemotherapy is, it isn't surgery or something that requires an actual physician to administer. The oncology nurses are trained. Ask questions about comfort, post-treatment, and related topics. They will have useful information. If they don't, ask them to find your answers.
I've always been comfortable advocating for myself, thank goodness, because with the bladder cancer, I haven't had anyone around to look into things for me. It isn't a picnic, but I did find that the oncology nurses seemed quite qualified and efficient.
In my opinion, your confidence in the process and the practitioner is essential. I did a lot of research and knew which protocol I hoped I would receive. I didn't try to influence the doctor, but I was pleased when what he prescribed was the one I wanted. I would probably have asked him about the GEM/DOCE protocol if he had not suggested it.
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3 ReactionsVery glad you did your homework and sounds like you're doing well....may this be the case.
I did a lot of research about GEM/DOCE and was extremely impressed with it, but the urologist was firm about next steps, meaning BCG. Is that because it's "their" way in his practice of many urologists? I don't know. In speaking to others w/similar cancer diagnoses to you and my husband, they went the BCG route first.
I appreciate your sharing your story. Most have concurred that the journey is a long one.
Sending light and health to you, Beth.
I’ve had 12 BCG installations in the last 9 months at Mayo and all of them were performed by a nurse. I think it would be unusual for a doctor to do it…it’s a pretty routine affair.
One piece of advice: I would check to see the dosage of BCG he is getting is a full dose (50mg is standard). There has been a global shortage of BCG in recent years with some places rationing doses. It doesn’t seem to get mentioned as much lately, so maybe it’s no longer the case and supply has caught back up.
@jr1466
Thank you, jr. I have read about this. And I want to ask, but I don't want to anger the doc (questioning his expertise/honesty) or the techs.
It's a balancing act and I don't want to change harming my husband in any way.
Let me ask, how painful was this process at Mayo. Others who have gone to well-reputed centers like Hopkins, Mayo, Cleveland Clinic, etc., have said it was not at all painful and they didn't suffer much after.
My husband had uncomf side effects for only a few hrs after his cysto. After TURBT, the usual burning and horrible feeling of constant urgency but no output. But that only lasted a few hours as well.
He starts therapy in a little over a week. I feel like we should have gone for that 2nd opinion at Hopkins or GWU. Both an hour from us. I contacted Hopkins but no response.
Thanks in advance.
My very BEST to you for continued health and hopefully NED!!!!!!