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8 years 4 days ago #35365 by Markq
Well I got back today from MSK and there were thankfully no surprizes. Dr. Dalbagni is a man of few words, but he agrees with the local Uro's treatment plan.

I got a cystoscopy in the office and he was satisfied with the way the bladder looks so he didn't recommend a 2nd TURBT. He also saw the local Uro's notes, the CT Urogram, as well as the slides from the TURBT. It's on to BCG starting Friday.

It puts your mind at ease a bit knowing the experts agree with your treatment plan. Now, I'm established there as well should the need arise in the future.

47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.

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8 years 1 week ago #35285 by Alan
Mark,

I passed tiny amounts of blood for about a day after my first TURB. None on the second or follow up. More than 2 days and I'd call your doc. I also remember I passed a scab or something similar after about 17 days after mt first TURB-which my uro predicted based upon his taking the tumor out. I would have been concerned had he not warned me about it.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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8 years 1 week ago #35282 by Patricia
Absolutely the right thinking on your part. I can't tell you enough times that they saved my life and i flew in from Ohio. They moved quickly and honestly i walked out of surgery 30 minutes after i woke up...no cath and i never had a drop of blood.
You might look into Hope House and see if they have any room..its free and for out of towners. Check on their home page for the contact. A friend of mine from Florida stayed there when they had their surgery and were pleasently surprised at how nice it was.
I'm sure your local uro can follow up with you..certain times you will want to go back to MSK. All my follow ups were done locally and copies of CTS and blood work or whatever sent to my surgeon for confirmation.
And yeah my Dad was something...so smart..he knew the diseases better than the docs! Well he almost had to. I grew up reading JAMA..thought every kid did..never got to Dr. Seuss until i had my own kids!!!
my very best wishes to you. I think you've got it under control and your priorities straight.
pat

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8 years 1 week ago #35276 by Markq
Thanks Pat and Mike for all the advice. I called the Uro on call last evening and he said the same thing you did about the blood and clots in the urine. It's cleared up again for now at least.

I'm preparing my wife for the possibility we'll have to go back to MSK for a 2nd TURBT after the consultation next week. We aren't too far away, but it will take 3-4hrs to drive there. I have a big dedictable on my health insurance if I don't get this done where I work but you've convinced me it's worth it. Money means nothing if you're dead. I've most likely got high grade and this is my window of opportunity to get it right. I'm not going to let it shut without having done everything I can.

Florida is one of only a couple of states that doesn't let you transfer a license in from another state. I'm not sure I could pass the boards today to get a Florida license without a lot of studying. That's impressive that your father did.

47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.

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8 years 1 week ago #35274 by mmc
Mark,

Blood and clots after a TURBT happens often. Not everybody, but a good number. As Pat already said, it would be better to get the 2nd TURBT at MSK. Once bladder cancer is confirmed, it is best to get directly to the top docs at the top places (and that's what you are doing).

Good to hear that the slides are already at MSK so all should be ready for your appointment. It would be a good idea to get all of your uro's records sent as well. Most are happy to fax them over to the 2nd opinion doc, but I requested copies of all of mine because I started my own log of everything (Dr. Notes, surgical notes, CT scans, x-rays, IVPs, basically every test/BCG treatment, mitomycin treatment, cystoscopic exam, etc.).
I had hard copies, scanned copies, and CDs with all the images. I went to a 2nd and 3rd opinion but if you're going to MSK, then I don't think a 3rd opinion would be necessary.

Best of luck on your follow up at MSK. Hope the diagnosis stays T0 after reTURB and reviews. Even so, you want to keep all of your records because bladder cancer has a high recurrence rate and it is good to track everything. Write down your questions and write down the answers that the doctors give you and keep a log.

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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8 years 1 week ago #35273 by Patricia
Mark,
Its not unusual to have blood after the first TURB...i didn't but i've sure heard about many that have. I would really recommend the second TURB be done at MSK....they are so superior with this surgery and specifically with bladder cancer. They have more uro's that deal with this than MD Anderson.
My dad by the way was a PharmD and headed up the midwest division of The Upjohn Company before Pfeizer bought them out. When he retired he moved to Florida and quickly got bored and decided to get his license in Fla and work as a Pharmacist..this was at age 74. He had to learn the computer at the same time...and he passed with flying colors after studying for a little over a year and became the oldest person to pass the test in the state of Florida. He loved the people contact and the stories he would tell about doctors who wrote the wrong scripts...so many drugs sound alike..they were so lucky to have him.
Anyway hang in there....pat

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