first TUR on 8-2-02  High grade urothelial ca

first TUR on 8-2-02  High grade urothelial carcinoma, invasive into the muscularis propria, arising in association with in situ carcinoma.

first TUR done 8-2-02 after hemmorragic bleeding 2 days earlier passing huge clots (first sign of anything wrong) pathology showed invasion.  Went to Memorial Sloan Kettering for a second opinion with a leading oncologist/urologist…he took a larger slice and the path came back.."flat and papillary, high grade. No invasion is seen"…recommendation that my bladder come out.  I was seen as a candidate for the neo-bladder…but having finally been able to research this i’m not sure its a viable option for a woman.  I’ve talked to 3 subsequent surgeons….all think i’m a good candidate…under 70…trim and fit..former dancer/performer….but i’m having trouble finding other women who have had a success with it.  If you’re out there please let me hear from you.  And…i’m finding that the larger cancer centers want to bank their odds by taking uterus, ovaries, fallopians, urethra, vaginal wall……some like Johns Hopkins are sparing the urethra and vaginal wall….smaller centers yet excellent like Indiana find the stats don’t indicate a spread to those areas and don’t take them out unless the cancer is near the urethra or in the nodes …so who do i pick?  Or what about bladder sparing work being done at Mass. Gen?  I need help sorting this all out.

New Update….Whew…i’ve been all over..USC/Norris, Indiana U. Mass. General and talked with absolutely the best.  Pretty much have confirmed that the neo bladder only has about a 30% success rate in women.  I have just visited the Cleveland Clinic and met with Dr. Inderbir Gill who is the only person in the world to do laproscopic bladder reconstruction.  I am now sceduled to be the second woman to have an Indiana Pouch done laproscopically on Jan l0th.  This surgery does everything that conventional surgery does and you’re left with 5 to 6 tiny incisions that don’t even require a bandaid.  They have done the neo bladder, the ilial conduit and the Indiana.  Wish me luck!!!

April 5, 2003……..
 Well it went well for about 9 days…then a complication…a piece of my small intestine got trapped under my ureter requiring emergency surgery.  Dr. Gill in Hawaii at the time and Dr. Ng performed the big cut.  I didn’t do so well this time…3 l/2 week stay…mostly drug induced stupor…a major blood clot in my left leg…and the mandatory staph infection in my top 5 stitches.  Found the nurses in G70 mostly overworked and impersonal..never saw the same one twice……moved over to G71 ..what a difference..i had the same nurse and same aide every day and everyone working that section was just marvelous.  The ratio of nurses to patients on G70 was 6 patients for one nurse…don’t believe their literature…  I’m home now…still feeling like i’m walking around with an instrument in me and probably expecting too much too soon.  
May 3…2003
FINALLY….feeling better….boy..your intestines really decide to punish you with this surgery…..but finally and i think its because i decided to just go ahead and eat the foods i used to eat…you know pepperoni pizzas..and the good stuff…they’re finally responding and working…hooray!!  I hate watching the K content of my food as i love salads…….but they haven’t gotten my coumadin levels right yet in 8 weeks…….i’m not sure what to do about that.  I certainly wish i had gotten my medical degree as i seem to do more research than my doctors here in Cinti and then can’t do anything about it!  That remark will certainly make me popular in the medical community!  Oh well..most of them run when they see me anyway after playing devils advocate for my father when he had bypass surgery at age 84 and then had to be opened up 3 times in 3 weeks..ensuing blood clot to the lungs…and pneumonia……and addicted to the opiates they were plying him with….don’t ask…it was a nightmare.  Pat

Well its October….i made it thru my first CT scan ok….having trouble of late cathing..doesn’t want to enter the pouch..don’t know what thats all about?  And 3 of my dearest friends have come down with colon…one lymph node…..whats that all about??  what are they feeding the chickens?

Ok…made it thru my second CT and got the A-Ok..Whew…..find that the pouch is a continual learning curve!!  I have learned to always have 3 different types of catheters on hand…my pouch "Hal" definately has a mind of its own at times!

Well i’ve been absent for a while…2 yrs to be exact..maybe 3….this month it will be 4 yrs since my radical and i’m an absolute pro with that cath now and i’ve definately let my new bladder know who’s the boss.  Hal now leaves me alone at night so i get at least 7 to 8 hours sleep.  And you know what…..i don’t have the problem my other female friends are having at that "certain age" when they sneeze.  I kind of think this standing up thing is ok.  All my scars and lumps are gone even the big one…must be the Italian heritage.  Now i’m dealing with the loss of my husband who never left my side during my surgery and subsequent stay.  He went in for what should have been routine by-pass surgery and never came out.  There were so many mistakes made…i wanted him to go to Cleveland but his cardologist here convinced him that the surgeon here was one of the best.  I feel a lot of guilt about not being more assertive.  I miss him terribly.  Just one curve after another huh?

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