Question from newly diagnosed with muscle invasive

14 years 1 month ago #30921 by mmc
Unless your local does about 100 a year or more of these surgeries, I'd suggest Johns Hopkins. They are #1 in the country. Better outcomes.

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 1 month ago #30920 by MBourne
Good Morning, Has any one had their surgery at Baptist in Winston Salem NC or at UVA in Charletesville VA.? My local uro is saying he can perform the surgery at the local Hospital Carilion in Radford Va. I live in Soutwestern Va so UVA or Baptist are both within a couple hours.
When it comes to my health travel distance is really not a concern.

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14 years 1 month ago #30915 by Patricia
Not always Mike..i was T2a and low grade. It had been there for quite a while growing slowly. If i had known the tea colored urine was sign of blood i would have caught it before it became invasive.
pat

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14 years 1 month ago #30914 by Hox
"New" Mike...my advise, get educated in a hurry. Use this site and the net to your best advantage. Not only will this empower you, it will help you to help your doctor to make the right decision for you. In January I got the news that my cancer had gone aggressive. My fear was palpable. Now, in two days, I go in to have my bladder and prostate removed. My mood, upbeat, seeing this as a gift, but reasonably concerned but truthfully, no fear. Reading on this site and hearing the stories of others has greatly served to normalize this experience for me.
I hope to be able to report my progress as Norm did so others travelling on this road behind me can see another person succeed at the process.

Good Luck Rick

Rick

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14 years 1 month ago #30911 by mmc
Mike,

You want to find out stage and grade from the pathology reports.

Since you said it is muscle invasive, that means it is at least T2 (which means Stage 2) and since it got there before you knew anything, it's probably high grade (3).

While that might sound pretty scary, many of us (including me) have T2G3 and we're doing just fine now. Of course, we don't have original bladders but you will be surprised how much you don't miss it.

The new diversions they can do these days are amazing. You don't know what you wind up with until the surgery because it all depends on what they see when they are in there.
Typically, the neobladder is preferred in men.

They make the new bladder out of segment of small intestine and hook it up to all the original plumbing.

If that's a no go, then Indiana Pouch is the next option. No, it's not shaped like Indiana, the surgeons who came up with that type of diversion were in Indiana. That's like a neobladder except they can't hook it up to your urethra so they make a stoma either at or near your navel and you just use a catheter to drain it when it's full.

If that option doesn't work due to problems you may have, then ileal conduit is an option. That is where they don't make a pouch/bladder inside but they hook your ureters (tubes from kidneys to bladder) to a stoma they create on the side. You hook a drain bag to that stoma and urine just goes in the bag.

First thing is seeing if you can get those hospitals/doctors that Pat suggests.

No question is off limits here so please ask anything that you have any concerns at all about.

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 1 month ago #30909 by Patricia
Mike there is only one NCI designated cancer center in Richmond Va and only one surgeon and he primarily deals with prostate cancer.....if you can't leave the state due to insurance i guess you could ask how many bladder cancer patients he sees and how many radical cystectomys and reconstructions he does in a year.
www.massey.vcu.edu/expert/detail.aspx?ID=1595
If possible i would travel up to Johns Hopkins in Baltimore, MD which is the #1 Urological cancer center in the country and has the best specialists...my favorite being Dr. Mark Schoenberg
urology.jhu.edu/markschoenberg/index.php
Going south to N.Carolina i would recommend Dr. Raj Pruthy in Chapel Hill
www.med.unc.edu/urology/faculty/pruthi
This is such a specialized field and you want someone who deals with it ALL the time.
pat

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