For Al a question on Rebuilding Bladders

14 years 11 months ago #25158 by Patricia
Replied by Patricia on topic For Al a question on Rebuilding Bladders
Al...here's a start for Maria's posts...there's quite a few but her journey was very frustrating if you have the time to go through it.
www.bladdercancersupport.org/index.php?option=com_kunena&func=fbprofile&task=showprf&userid=1219&Itemid=114&limit=15&limitstart=210
And nobody knows the right questions to ask especially when there is no time from diagnosis....its pretty daunting.
Pat

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14 years 11 months ago #25156 by alsimons
Replied by alsimons on topic For Al a question on Rebuilding Bladders
LOL Pat

I don't know how you rememeber half the topics or people you help. I've tried looking for Maria but can't seem to find it. I'll keep looking and I WILL have answers for everyone next Friday. Its kind of embarrasing to admit I haven't asked the right questions.:S

Thanks agin

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14 years 11 months ago #25125 by Patricia
Replied by Patricia on topic For Al a question on Rebuilding Bladders
Al...forgive my lapse of memory...perhaps i should go visit a memory loss site but then i'd probably forget how to get back there:silly:
Anyway...will be interesting to see what latest pathology report shows...you've lucked out for a long time...tumors keep coming back but they certainly keep varying in grade but not necessarily stage. I do know from hearing from others in Florida if you do decide to do the BCG do it at MD Anderson...not Shands. They have a more competent facility. If you can go back and find posts of our dear sweet Maria who recently passed away she had some pretty difficult times finding a clean and competent facility in Florida. She was finally happy with MD Anderson but too much time had gone by. If your insurance allows...i'd even look into F.Lee Moffit Center (they're picky on insurance) and The Cleveland Clinic down there in Fla..both know a lot about bladder cancer and i already gave you one of the best known researchers in the field of bladder cancer Dr. Mark Soloway.
Pat

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14 years 11 months ago #25114 by alsimons
Replied by alsimons on topic For Al a question on Rebuilding Bladders
Thanks for the replies. Pat if you remember my blog at the Cafe' "What Not To Do" I have not gone back to the original Urologist. Instead I went to MD Anderson and saw Dr Julio Hajdenberg MD who is in charge of Orlando's Genitourinary and Hematology Specialty Section. It was he who stated remove it and referred me to Dr. Rosser at UF Shands Cancer Center in Gainesville for the neo-bladder. Since I had gone through a similar circumstance with the colon resection I accepted the fact that the bladder needed to go and I would learn to live with it....but at least I would live without the fear that at any time the cancer could spread outside the bladder. That flipping of the coin thing.

During the process Dr Rosser found and removed 7 additional tumors. There was the possibility they were missed during the last TURB so the Mitomcin C was supposed to curb that. Based on his findings he felt BCG was a viable option but he would support either if that was my decision. Well the wife and I discussed it and of course if I could keep the bladder it was worth the shot. Also at that time the pathology report came back as low grade. (Again thank you cause you answered my question about going between high and low)

Now I was referred to a local Urologist for the BCG. During this time I have passed a kidney stone had a bad UTI and now 5 more tumors. I have not seen the pathology report yet but plan on getting a copy to take with me to MD Anderson on the 17th. I have cancelled the 1st BCG for the 13th until such time as this thing is settled.

I fully realize that my attitude during the 2005 episode has placed me in this situation and although I try to find humor in stressful times not much is funny these days. For peace of mind for me and my family I am leaning strongly in favor of the neo-bladder.

Does anyone have a crystal ball I can borrow?

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14 years 11 months ago - 14 years 11 months ago #25110 by Patricia
Replied by Patricia on topic For Al a question on Rebuilding Bladders
Whoa...still wrapping my head around all that!
"It is incurable but he could try and slow it down with BCG"
HUH? incurable? don' go back to him.
Dr Julio Hajdenberg at MD Anderson is a Hematologist...have they recommended a surgeon?
One of the top bladder cancer surgeons is located in Miami which i know is a bit further...Dr. Mark Soloway
www.umiamihospital.com/PhysRefProfile.asp?guidPhysicianID={4AADCF9F-3868-11D5-81FF-00508B116BA6}
Pat
PS...you'll have to copy and paste the entire link as it did not all go through.......

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14 years 11 months ago #25106 by mmc
Al,

I don't blame you for being frustrated!

WOW! That's a lot of tumors.

I will tell you that I am VERY happy with my neobladder.
BCG to "slow it down" does not sound very appealing. How will they know how often to check back to see if it's invasive and if it's high grade, then how can they be sure that it doesn't go beyond the bladder muscle to outside the bladder before they catch it.

Doesn't seem worth the hassle of every six weeks getting TURBs to me.

We all have to make our own choices but if I had the reports you posted, I'd have probably opted for the neobladder in December 2008. The other factor is your concern that other health problems would make you not a candidate in 3 years.

Frankly, that one is a bigger concern with regard to neobladder. From a caregiver perspective, I believe I've read on this site somewhere that it is easier to take care of an Indiana Pouch or ileal conduit. The ileal conduit is the easiest, least risky surgery and takes much less time.
If you think you may be in a situation where your wife or somebody is going to have catheterize you on a frequent basis, then another option may be a better choice.

I may be over-reacting to that comment you made about 3 years down the road. If so, then disregard what I've said. If not, you may want to discuss the other urinary diversions with the doc at MD Anderson being sure he understands any other health issues.

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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