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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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I am getting ready to have my fifth BCG treatment. The doctors have technicians that give the treatment. The pain that your husband is feeling is part of having bladder cancer believe me I’ve had three surgeries. It will subside in time, but he will always have spasms and burning. It’s something that comes with a territory, I pray things will go well with you and your husband. I’d stick with the BCG commit and see what happens and at least that’s what I’m doing. I pray the best for you both.
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1 ReactionHope the treatment goes well.
Is your pain from the treatments? Thankfully you are almost done! Hope you are NED and stay there!!
Best to you.
@glinda47
Sorry. It is Max Kates!
As to your other question , we were referred to a surgeon at. Medstar in dC and without going into our personal views too far, we had a very bad experience at every level, incorrect prognosis at the get go, bad surgical experience resulting in three miserable days hospital admission and very bad communication at every stage.
@katereut
Thanks, No problem, Kate.
I'm assuming you were at WHC in DC. My uro also recommended them if surgery was indicated! Sorry to hear of your experience and thanks for sharing it.
Wishing you health!
Hi
I did want to mention one other thing about being at JHH. Although you are with the best of the best there I think, when getting treatment at any of the big research hospitals etc. you don’t see the “Big Doc” all that much. The great thing about Dr. Kate’s and Dorothy Davis or Dr. Patel is that they will answer emails and set up Zoom meetings when you feel you need info etc. Dorothy particularly is attentive when you are struggling to understand what is normal and what isn’t in the early days.
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So appreciative of that info, Kate.
I did set the ball rolling at JH requesting a 2nd path opinion, but don't have faith that my uro's office is doing what's necessary to get the slides and records to them in a professional way.
I think we'll go ahead with the BCG treatments at this point make an appt now with one of the 3 docs you recommended for after the treatments for a consult/blue light cysto to see how things look. If all goes well, that would be Oct.
Again, thank you for these very hopeful words.
Gail k
@glinda47
Gail
Keep in touch and please feel free to private message me.
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2 ReactionsThank you, Kate.
It's a very confusing time and so much info to consider, much of it conflicting, along with each individual's situation being different and often, unknown. Exhausting.
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