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Considering a trip to MD Anderson - questions

8 years 4 months ago #37616 by Bambi
Hi Pat and Bill-
So yesterday we went and actually picked up the appropriate records and then faxed them ourselves to the gentleman I spoke to at MD Anderson's urology clinic. He called later to say he received them (left a message ). It sounds like the next step is for them to look these over and then assign a Dr. to him and then they'll call us back with an appointment. I also called Dr. Lerner's office at Baylor and we have the soonest available appointment, which is May 19th. My husband is very focused on what will be the most "bladder sparing" treatment. I can understand that completely, but I am anxious to hear what Dr. Wilson has to say on Monday. I know my husband wants to think that the BCG treatments will be the answer and I certainly would hope that as well. I guess we will just see where things take us next, but it feels good to have some things started with 3 very good options and I have you all to thank for that.
Somehow I stumbled upon a post here yesterday where someone was mentioning that you all are too inclined to push a second opinion, etc and that there wasn't enough "fun" here. As a newbie on the site, I know it really helped us to have that "push"- otherwise I don't know if we would have thought about it. Maybe a friend would have asked the question at some point, I don't know. But this is incredibly serious stuff here, so I'm ok with you not being fun.
I haven't explored the site yet beyond the newly diagnosed area and your responses. On the other site I've been frequenting, they have a category for "quizzes and games" and "off topic". Maybe that's what people are looking for?
Anyway- thanks again. I will post on Monday or maybe sooner!
Bambi

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8 years 4 months ago #37595 by BillM
Pat,

It would nice for all these sites with ratings would have info for bladder cancer as a category or sub group. I still find info on Dr. Donald Skinner as being the best with no mention of him being retired. Go figure…

Bambi,

CU Aurora, MD Anderson or Baylor are great choices. If your going to MD Anderson, you might try to get into Baylor for a second also. I don't think three opinions would hurt and might give you a better idea of what might be ahead.

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...

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8 years 4 months ago #37593 by Patricia
Bill,
If you type in Los Angeles, CA and urology you will find 4 of the top bladder cancer specialists in the country, Gill, Boyd, Eila Skinner, and Sia Daneshmand.
Cancer Hospitals and bladder cancer ..one does not mean the other has that specialty with the exception of MD Anderson and Hopkins and Memorial Sloan. Actually in Urology USC/Norris is 16th by US News and World Report. Its just too bad there isn't a category for Bladder Cancer in and of itself. That would change things a lot.
One of the things you must have is correct pathology and the misdiagnosis margin is great...over 50%. My Re-Turb saved my life. My local uro left margins. Dr. Herr at MSK (second opinion 9 days later) got all of it and they also do a cytology before you leave. I did not have one cancer cell in my sample. That gave me time to research what diversion i wanted. I was T2 and it would be back......actually it didn't come back as my pathology on my excised bladder showed no cancer. Its a tricky cancer. My original prognosis was not good and yet with a top surgeon obviously it increased my odds and i'm now 8 l/2 yrs out. Of course, breast cancer decided to rear its ugly head a year ago...as Rosanadanadana says "its always something"!

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8 years 4 months ago #37588 by mmc
Dr. Maroni did my surgery. He's a great doc and a great surgeon but I had some complications. Dr. Wilson does 70% of the cystectomies in the area (includes some neighboring states I think) so I'd suggest her. Maroni does the next highest number of RCs after Wilson.

Rudyskier had her (Wilson)do his surgery as did Bill (who already posted here).

I went to MD Anderson for a 3rd opinion but it was right after the hurricane (Ike). Actually, I had to reschedule because we were in the airport in Denver when the hurricane hit Houston. I guess they were trying to catch up but I was pretty irritated after waiting in the waiting area for 2 hours and then in the room for another 4 hours. The lights were out and everybody was gone by the time they got to me and I just wasn't happy with things. The doc there was a great doc but I didn't care for his plan at the time. My local urologist had said the cancer had spread to both kidney's and the doc there said that's just so rare we're going to just assume it was a contaminated sample and ignore it. I said "Shouldn't we check at least? No sense getting an RC if both kidneys have it and I'm going die anyway." He said, No, we'll just assume a bad test.

Maroni at least explained why it still made sense for the RC, but also did another test for the kidneys and scoped both. The MD Anderson doc was just taking too big a risk with my life (in my opinion). Of course, luckily, it turned out that he was right but I was not prepared to go along with a "ignore it" plan at the time.

Maroni did follow up cytologies and scans after the RC to be sure the kidneys were clean.

He's a great doc but I usually suggest going to the one who does the most.

Your husband's situation is different and MD Anderson doesn't have such a great reputation for nothing. I just was ticked, didn't like what he said (even though he's one of the top guys) and liked the idea of having the surgery closer to home.

I trusted Maroni with my life and I don't regret it. I would also trust Wilson with my life. Maroni even offered me to have her do the surgery when I was asking how many he does and who does more. By then I felt I had a solid relationship with him and his credentials were great and I trusted him so I stuck with him.

I'd bet if I had the surgery at MD Anderson, I'd be just as happy with that decision as well.

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 4 months ago #37587 by BillM
Hi Pat,

Noticed USC Norris don't show up at castleconnelly.com but the doctor that Dr Wilson shares the clinic with shows up, Dr Maroni.

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...

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8 years 4 months ago - 8 years 4 months ago #37585 by Patricia
bambi,
If you go to castleconnelly.com who lists top doctors in thier field ..type in urology and town and state you will see that Grossman (MD Anderson) and Lerner(Baylor) in the top this year and Kamat from MD Anderson has been in the past...just didn't make it this year.
Shandra is not mentioned this year? hmmmmmmmmmmm???
pat

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