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Dad having trouble getting treatment

11 years 11 months ago #9723 by Patricia
Njordan....OK you're with one of the best if its with Dr. Herr. He actually was my second opinion after a pretty botched TURB where i live. Dr. Herr insisted on a second TURB and pathology report and wanted his own tests done. I would absolutely trust whatever he has to say regarding this BC. If you haven't seen him already just request it...he's pretty accessible. I was in in less than a week. This is what he does everyday. Please let us know what their pathology says and CT scans. Please keep your trust in this institution. What one doctor can't get believe me Dr. Herr can......Pat

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11 years 11 months ago #9712 by njordan
GeneBene-They are not 100% sure if it is muscle invasive because they said that they would have to do another resection in order to get another biopsy. The original biopsy did not come back muscle invasive, however the doctor said that my dad has so much cancer in the bladder, it is difficult to biopsy everything. The reason they suspect muscle invasive is because of what they see in the ct scan-but they cannot confirm this.

Patricia-the pathology report was done by the first doctor -the one who did the turb-she is also the one who said that she could no longer help him bc it was beyond her expertise. Therefore, my father went on to receive two more opinions-one from sloan kettering and another from north shore located on long island. My father is trying to get the surgery at sloan kettering with Dr. Herr. I am hoping he will get cleared for it-I believe it is dependent on tomorrow's angiogram. BTW-when I said "she" in my post, I meant the cardiologist who works with sloan kettering-she has to clear him (sorry i know the post was confusing)

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11 years 11 months ago #9681 by wendy
Hi,

Sorry for the situation. If distant spread is found before surgery, it is not done. If he is not up to chemo, radiation is the only option. Still, radiation can buy him quality time. The best case scenario would be surgery and lymph node removal, the surgeon knows this and I'm sure is hopeful that this will be an option. But a person must be clear of mets before a cystectomy can be done. Sometimes chemo can clear up lymph node spread pre-op (and sometimes even distant spread). I'm sure the surgeon wants to give your father the best chance at a cure, but of course no doctor or institution wants to do a treatment that might cause harm instead of help.

Please keep us posted.
Good luck with everything.
Wendy

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11 years 11 months ago #9662 by Patricia
Njordan....first of all you are at a great facility ..Memorial Sloan. Was the original TURB or resection done there and if so what did the pathology report say...you have a right to have that..just ask for it. May i ask if Dr. Donat is his doctor at Memorial as you said she? Given his history it is prudent to do a complete cardio check up prior to cystectomy or even chemo. Its a bit confusing reading your post....i would be very surprised if the surgeon at Memorial didn't insist on doing their own TURB and pathology report Please help clear this up for me.....and which doctor said they could do nothing more for him? Memorial or the other place.....Pat

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11 years 11 months ago #9661 by Gene Beane
The other thing is they usually don't advise bladder removal unless it is muscle invasive, my husbands was Stage 3 T-2 muscle invasive, its important to know if it is muscle invasive or not, not could be or might be. You need afirm answer on this to get on with a plan. Ginger

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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11 years 11 months ago #9660 by Gene Beane
Theres many here that have gone to Sloan Kettering, I would think with there reputation that they are guiding you in the right direction. Did your dad have a turb where they went in and took the tumor and got a path report? Our surgeon at the Cleveland Clinic said 3 months from the diagnosis is usual. Ours started in April 2007,diagmosed July 3rd, bladder removed Sept. 14th, no cancer elsewhere, lymph nodes or prostate. They can do scans to see if it has spread, they always do them pre surgery, so you may want to ask to get those done. It would help to know. Wendy will chime in here soon I am sure with some advice, as well as others.
Your b/c friend, Ginger Beane

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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