Husband newly diagnosed

14 years 4 days ago #31041 by Patricia
Replied by Patricia on topic Husband newly diagnosed
nancikay........UCSF has a better team and if you can't do LA and i would really only suggest USC/Norris there...they are kind of the birthplace of cystectomy. I would recommend Dr. Maxwell Meng at UCSF
www.ucsfhealth.org/adult/cgi-bin/prd.cgi?action=DISPLAYDOCTOR&doctorid=27371
or Dr. Peter Carroll
www.ucsfhealth.org/adult/cgi-bin/prd.cgi?action=DISPLAYDOCTOR&doctorid=158
UC Davis as i remember has only one specialist in bladder cancer...i'd personally make the trip to UCSF.
pat

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14 years 4 days ago - 14 years 4 days ago #31035 by mmc
Replied by mmc on topic Husband newly diagnosed
Here is a list of links I put together for Rudyskier when he first came to the site. It is a collection of threads from various stages of my experiences and the questions I had as well as answers that others provided.

Hope this helps.

tinyurl.com/yeqj93j

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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14 years 4 days ago #31033 by nancikay
Replied by nancikay on topic Husband newly diagnosed
Reading someones story from the beginning is a good idea, I guess I'm not sure how to find one! Is there a "my story" thread? I'll look through the posts, especially after we see the pathology report.


Still haven't decided about a second opinion although I am really leaning toward it for the going forward part of all this!

Someone had recommended UC Davis, is there a specific doctor anyone knows of who specializes in bladder cancer? We can also go to UCSF. Going to LA is much more difficult both physically and financially. I'm sure we could get in at UCLA because my brother in law went to medical school there and could probably get us in easily. Need to find out what insurance covers.

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14 years 5 days ago #31021 by dukel
Replied by dukel on topic Husband newly diagnosed
Nanic,
Sorry your husband is having to go through everything he is
and I know it's just as hard on you.
I was diagnosed about two years ago, neo surgery in Dec. All i can tell you is if they can save his bladder it is worth
everything he is going through. Are there going to be things
he don't like, you bet. But you do what you need to do.I
read a lot about the process on this site. Maybe one of the
best ways is to find a thread on here of someone that started
there story early and follow it through. I know when i first
started, i could hardly stand to read about some of these things. But it's a process, i hope a short one for your husband, as you will see as you read and learn we make it through the things we have to do to live.
Me' i'm three months from my neo surgery. Today i took our washing machine apart and put it back together. Life goes on!!!
Wishing the best for both of you.
Duke

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14 years 5 days ago #31018 by nancikay
Replied by nancikay on topic Husband newly diagnosed
Hmm, chemical cystitis. Just the name makes me wonder. Up until early yesterday he needed to pee every 3 hours, which is very very unusual for him. Yesterday and today its every 2 or so. I asked if he was able to do a "kegel" type move and he said yes, that doesn't seem to be a problem. I will look up the chemical cystitis. They also told him that during the procedure they had to dilate the head of his penis, and just the description made him feel ill! I don't know if that's a normal part of the procedure or not.

I really feel like the docs just don't prepare you much at all for this! and of course, we have no idea what to ask, or we didn't have any idea before.

Oh and we are picking up the pathology report tomorrow. They just want a signature. So I will post that here once we get home.

Thanks in advance to anyone who responds! It certainly helps!

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14 years 6 days ago #31011 by Patricia
Replied by Patricia on topic Husband newly diagnosed
nanci..my first post went out to cyberspace!!
The most common side effects from the intravesical use of mitomycin C are chemical cystitis and allergic skin reactions. Is hubby having any other reaction? Call the doc and let him know.
As for the path report it is yours. Call the lab and tell them you are going to pick it up...just have a picture ID..hippa laws and all.
pat

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