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BUMMER II

9 years 5 days ago #29067 by Patricia
Chuck..the fact that the tumor is in the same area is a pretty good indication that the surgeon did not get all the margins and it re-seeded. It happens more than you would imagine.
In fact it happened to me. I chose to have my second opinion 9 days after my TURB at MSK in NYC..and the top surgeon there went back in 2 days later and got the margins the first surgeon missed.
A pretty good center in Florida is the Moffitt Center..at least NCI approved. Do not know anyone in particular to recommend however but here's a link to look over.
http://www.moffitt.org/Site.aspx?spid=BF72D4455066450A96F788D72D1E2187&type=PhysSearchByProg&progname=Genitourinary+Oncology&SearchType=Physician
As for the Cleveland Clinic in Weston here is a physician pretty well known but not sure if he's mired in paperwork or surgery ??
http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=13592

If you can go out of state..i'd opt for Johns Hopkins and Dr. Mark Schoenberg...he's tops
http://urology.jhu.edu/markschoenberg/index.php
Pat

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9 years 5 days ago #29065 by cljjlk
Thanks Mike and Jack, you answered my questions. My plan now is to go this one more round with the BCG and the follow up TURBT providing the report from John Hopkins comes back the same as the initial local report. If we still have problems, then I'll be off to seek a second opinion from someone that has more expertise. I also think that John Hopkins has a clinic in the local area, but I’m not sure what their specialty is. My current Uro is the second one I have had since my original discovery. I lost confidence and patience with the last doctor and especially with his staff. The current one (L. Kaufman) has an excellent reputation and he and his staff treat me like they really care. Again guys, thank you for your support and advice. Chuck

dx - Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10

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9 years 5 days ago #29060 by Moonerj
Hi Chuck

This group encouraged me to get a 2nd opinion. I am so glad they did, it put my mind at ease.
I had my path reports and slides sent from the lab by my Uro to the cancer PMH hospital. Because my Uro had did such a good job of getting biopsies, there was no need for a further Turbt to be done at the cancer hospital. This was told to me by the 2nd opinion Uro, who is one of the top Uros in Canada.
He agreed with my stage and grade of all tumors and agreed with my treatment regime. He actually told me that I was in very good hands and thinks very highly of my Uro.
This my friend did more for me than you could ever imagine.
I began to sleep better, my attitude changed and I began to learn everything I could about bladder cancer so I could assist fellow warriors with my experiences.
I can never thank Cynthia, Pat,Julie,Doug and Anita, Char, Nix, LadyJane, Ed, Sailer, Knut, and Mike and so many others enough.
I wish you all the best,
Jack

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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9 years 5 days ago #29044 by mmc
Chuck,

John Hopkins and MD Anderson are definately top bladder cancer centers. I'm not so sure that a "branch" of Cleveland Clinic would qualify. Patricia knows the ins and outs of the best docs in the field so maybe she can weigh in on that.

It sounds like they did not get good margins either time. Having pathology done over at John Hopkins is great and that is a key part of the expertise they bring to the table.

It sounds like a reTURBT (even prior to additional BCG) is warranted to ensure there is proper staging. There should be good margins. Ef they didn't get it all the first time, is it really a recurrence (or just "the rest of it")?

Sounds like you have a great doc. It is common for non-bladder cancer center surgeons to get insufficient margins and also understage.

The reason I suggest going to a cancer center surgeon at this point is primarily the preceding paragraph.

Hope that clarifies things for you and I things go 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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9 years 5 days ago #29043 by cljjlk
Thank you all for your response and advice. I understand the wisdom behind obtaining a second opinion prior to having any change in treatment or a cystectomy. But why the urgency to go to a Cancer Center at this point? What I have read here at this site and others, the standard treatment is BCG or BCG with Interferon. My Uro. stated depending on the report coming back from John Hopkins, he may go with the BCG with Interferon. In addition; in my opinion, by him sending my test data (FISH, etc.) along with the biopsy it is like getting a second opinion. Isn’t John Hopkins considered one of the better cancer centers for BC? Please don’t take this wrong, I’m not questioning your advice or you opinion, but rather I’m trying to pick your brain as to why you feel so strongly that you would advice to urgently get to a Cancer Center. I live in the SE Florida region and we have a branch of the Cleveland Clinic Medical System. I know Cleveland Clinic is considered a leader in colon/rectal cancer, but I’m not sure how they rank for BC. If I chose to go to a cancer center, would Cleveland Clinic be on your recommended list? Like so many of us that are fighting this disease, we value the advice of those that have preceded us and have the wisdom of experience. Thanks, Chuck :unsure:

dx - Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10

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9 years 5 days ago #29040 by GKLINE
I couldn't agree more with the suggestions....Get to a Bladder cancer center ASAP. The earlier the treatment the easier.
I always tell my doctor, "You know, I felt absolutly fine when we first met. And then you have made a huge change in my life" His answer is always said with a smile "I gave you this new life. And isn't it Grand?"

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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