Husband newly diagnosed

14 years 18 hours ago #31117 by nancikay
Replied by nancikay on topic Husband newly diagnosed
Hi Gracie,

Thank you for the offer! I will keep that in mind. His appointment is April 8 so I very happy with that. He is feeling much better today so my guess is he had an infection and its clearing up with the antibiotics.

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14 years 1 day ago #31116 by Gracie
Replied by Gracie on topic Husband newly diagnosed
There is a wonderful team of medical professionals @ UCSF - so lucky that is where I chose to go.

I did have Dr. Carroll initially but because of scheduling difficulties had the surgery (Indiana pouch) with Dr. Konety. Dr. Konety did a phenomenal job - I am forever grateful to him. Dr. Konety is now heading up his own Urology dept in Minnesota. I am back under the care of Dr. Carroll.

Dr. Carroll is an amazing, experienced surgeon and doctor. You cannot go wrong with him. He is the head of urology @ UCSF - consequently he is incredibly busy so appointments aren't always easy to get. Susan Smith is the person who schedules for him.

Dr. Meng would now be my second choice. He is also very, very experienced. From what I've heard he also does laproscopic if thats your pleasure. I would be extremely confident in his care. I know one woman who had Dr. Meng for her Indy and she had no complications or problems at all.

Dr. Greene is the least experienced surgeon out of the 3. This is my understanding about 2 years ago. With Dr. Konety leaving I'm sure she has taken on a lot more in that area. I believe her to be a competent doctor but would check into her surgical experience.

Pain management @ UCSF is excellent.

I would be happy to help in whatever way I can. I have been a part of the UCSF system for 4 years now and can find my way around. If you wish to speak by phone I would be happy to do that as well - just send me a personal email with your number.

Best,

Gracie

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14 years 1 day ago #31115 by nancikay
Replied by nancikay on topic Husband newly diagnosed
They didn't even mention the mitomycin-C. Also, they said they were going to call and check on him and they haven't. The doc who did his surgery wasn't there and they guy we saw was really nice and seemed to have a decent amount of knowledge. Great bedside manner. But their office is stretched to the max with people out, so.....it's not good.

I wonder about the cath. They mentioned that they had to "dilate" his ureter....or something along those lines. They made it sound like it was something extra special, know what I mean? So I wonder if he's got some kind of spastic something or other reaction. There is just something off.

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14 years 1 day ago #31112 by Patricia
Replied by Patricia on topic Husband newly diagnosed
Thats great Nanci..Meng is in the operating room the other 4 days and thats the kind of surgeon you want.
I hope the antibiotic starts to work soon...he probably cannot take Mitomycin C unless there was a traumatic cath that took place but they'll never admit to that.
Pat

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14 years 2 days ago #31105 by nancikay
Replied by nancikay on topic Husband newly diagnosed
Well so far so good...they already called and scheduled his appointment for April 8. Dr. Meng only has appointments on Thursdays. They said to just bring everything, no need to fax, and bring the slides and scans on disk. So we're all set to call and get those things ready.

Meanwhile he'll have his followup with his local doctor on the 1st so it will be good to have something to compare to...opinion wise.

His symptoms of urgency and burning are better, they have him on an antibiotic and on ProSed. He is having a bit of incontinence but I've got to think thats probably normal after the procedure, or at least a usual possible side effect.

Thanks everyone.

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14 years 3 days ago #31089 by Patricia
Replied by Patricia on topic Husband newly diagnosed
ok i see that A & B are the same tumor...first time i've seen it taken apart that way. UCSF will definately want to see the slides and its really no problem getting them...just alert them as to when you have to have them and they'll package them up for you to hand deliver. They'll also want a copy of any other reports or copies of CT scans which they put on disc now and can have ready at a moments notice really.
The urology dept is all very good at UCSF...newest addition Dr. Kristen Greene who studied at Johns Hopkins...I don't know as much about her but i'll bet she knows how to do an Indiana Pouch and i'm always on the lookout for the ones who know how to do that for the female patients.
Dr. Konety was also there but has moved on to Minnesota. Both Meng and Carroll have excellent reputations. One of our members here originally had Carroll but Konety did her Indiana pouch....I'll have to have Gracie get in touch with you. She lives in the San Francisco area.
Let us know how it goes..........Pat

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