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Patricia\'s Story

8 years 3 months ago #38231 by Cynthia
Patricia's Story

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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8 years 3 months ago - 8 years 3 months ago #38230 by Patricia
Bladder Cancer? Is there such a thing? I'd never heard of it. I checked my breasts each month for lumps like i was supposed to do.....but i ignored the coffee colored urine which appeared every once in a while for about 2 yrs as something i drank or ate.
My Ob/Gyn on a yearly checkup noticed microscopic blood in my urine.....oh ok. I asked my Internist about it and he said "Oh everyone has some microscopic blood in their urine"...ok. Then one night at 2 A.M. i awoke with a huge urge to go to the bathroom and noticed Gee that seems alfully warm ..i looked in the toilet to find scarlet red.....aaaaaargh..panic stuck..i called my Internist at that hour and surprisingly he was very calm and nice and told me to go to the ER right away which I did.
I was passing quite a bit of clots also by then and they did a CT scan on me which found a small tumor in my bladder. I just kind of numbly said "Cancer" and he said Probably. I was scheduled the same week with a local Uro for a cystoscopy ..and in the meantime i passed a clot as big as my fist..still don't know how that got out of me!...A TURB set up the next week and it was so small..lcm that they were sure it was early. Well pathology said T2 invasive into the muscle. This was all happening at a whirlwind pace mind you. Then the smartest thing i did was get on the internet and hit the top cancer hospitals and read all the uro's bio's. I made a second opinion with Dr. Herr at Memorial Sloan and they got me in 9 days after my first TURB. He took one look at the slides and said "re-do"...bad sample. Now this was 9 yrs ago this August before it was the gold standard to do a second TURB. This man saved my life. He went in there and got the rest of the tumor and the existing margins...did a bladder wash and i had no more cancer cells in my bladder at that time. I had no bleeding and the catheter came out once i was awake and i walked out of there 30 minutes later. Dr. Herr's opinion was that the conditions that precipitated the cancer were probably still there and that it would be back and a cystectomy was the smart way to go. Well i felt great...how could i have cancer?
Where we parted ways was on diversion. I had some time now to do more research and boy did i research. I talked with Dr. Schoenberg at Hopkins who was so generous in giving me names of top Uro/Surgeons who were what i refer to as "female friendly"..They can do all 3 diversions. Actually Dr. Schoenberg prefers the neobladder as did Dr. Herr.(I had decided on the Indiana Pouch)..so off i went to USC/Norris and Dr. Stein at the time, Dr. Bihrle at Indiana Simon Cancer Center, Mass General to talk to Dr. Shipley about bladder sparing (not for me) but glad i went, and Dr. Inderbir Gill at The Cleveland Clinic who was the only person who could do this surgery laparoscopically. I did all this in 3 weeks mind you. I would have gone to 2 other centers also but they could not fit me in in a timely manner. I ended up with Dr. Gill..i'm a diva..wanted a pretty belly!! He was great...surgery 4hrs 20mins.
I will say the pain management team at Cleveland a little lax as I was in pretty much pain after and nothing was working and one nurse actually yelled at me and said "You've got to get your pain under control"....Geez i didn't know that was my job. I was out in 5 days and stayed in a nearby hotel on the grounds for 5 more days with a nurse coming in every day to make sure i was cleaning my tubing correctly and doing ok which i was. I still was draining fluids so still had the 2 J tubes in me..one got removed before i left but the other one stayed.
Problem came 9 days after i was home and went to my local uro to have the remaining J tube removed. When he said "I don't know what the heck any of those are?" should have given me a clue but how hard could it be to take out a J tube? Apparently harder if you've never done it before. He trapped part of my small intestine under my ureter.....lots of pain. I called local hospitals and noone would admit me as they didn't know anything about an Indiana Pouch. Oh Geez......Cleveland is 4hrs away but 2 pain pills and 3 Ativan and off to Cleveland i went with my poor husband scared to death for me. I made it to the ER..they watched me and i seemed to be ok so they thought it was just an ileus and then fed me some soup which became projectile vomiting all over 3 nurses and the attending ER doc. I had become Linda Blair!! So another CT scan and surgery messing up my pretty belly as i had to have the long cut..my doc in Hawaii at a conference. I will give them credit though for pain management this time as i was out of it for 2 weeks and apparently a bear! I don't remember much at all...i know i accused a nurse of trying to seduce my husband!! I must have been just a barrel of fun.
Husband finally convinced them to wean me down off the drugs and i came out of my stupor and learned to cath and was out of there in 3 days. I did send flowers and candy to make up for my bad behaviour.
The pain i had after coming home was more soreness, mad intestines, but nothing a tylenol didn't help..no opiates. It took a while to train the pouch and i hated the lack of sleep for the first couple of months and i cursed at the catheters a lot until i figured out to have more than one on hand. If one doesn't work the other will. Each day got better and when i finally was able to drive and get out of the house i took my mayo jar and supplies just in case and i discovered that Starbucks always have clean bathrooms.
Now its all a memory and the fear i had prior to the surgery i wonder what that was all about? I'm just so grateful that the angel sitting on my shoulder led me to a great surgeon. Even with the best there can be complications but if you're in a place with a great multidiciplinary team they will fix you up.
Dr Ng who did my second open surgery must have had a Home Ec. class as he did a fabulous job of sewing me up...no staples...I have no scar at all anymore.
Only advise i have is DO NOT use the telephone in the hospital..you won't remember who you called or what you said and you will get a bill for $700.!
patrica

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