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Dad Daignosed with BC

11 years 2 days ago #24951 by michstate89
I hope he has given Cynthia a call. From what I have read there is a prevalence of understaging at biopsy - not something to mess around with. If he chooses to do nothing now, it could affect him down the road. I hope he gets on here and looks at the "invasive" and "men's issues" areas of this website. I have posted my experience and asked questions, he can do the same. My experience is superficial tumors, but I know that any one of us might have to make the same decision some day. From what I have read, they do great things with neobladders and people return to a pretty much normal life.

Of course a second opinion is always a good idea also.

Hope this helps and good luck.

Ross

Ross M
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment

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11 years 4 days ago - 11 years 4 days ago #24877 by Patricia
here's a great blog by a pathologist at Johns Hopkins...
http://apps.pathology.jhu.edu/blogs/bladder/
Pat
also Jessica if you want to make a complaint or ask about this "miracle cure" go here......
https://www.ftccomplaintassistant.gov/

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11 years 4 days ago #24873 by mmc
Sorry to hear that. I hope he calls Cynthia!

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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11 years 4 days ago #24872 by Cynthia
Please do me a favor take my number it is to the main office of the ABLCS my name if Cynthia Kinsella and I am the President 413-684-4240. Give it to your Dad and tell him if he wishes to give me a call. You can't make anyone do anything but who knows maybe he will call and it could make a difference.

You will be in our thoughts

Cynthia

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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11 years 4 days ago #24871 by Engigheve
Just a quick update, my Dad is still refusing the surgery. He really thinks he can beat this on his own, he has drive, but it is the wrong kind. I have tried everything to explain to him this what he needs to do in order to live a long and healthy life. I try not to think about it as much b/c the more I think about it, the more upset I get. I didn't want you all to think that I don't sign on any more, I do, just don't want to get my hopes up that he will change his mind. :(

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11 years 1 week ago #24725 by britt
JK, does you dad want to refuse the picture ot just worries about having VA do it?
Myself I feel sqaushed between my wife and the VA. She just doesnt want them doing any serious procedures there. My problem is that I am also worried about VA care . If we go outside the VA I could get one cysto done before we ran out of money.
I had the VA advocate promise me that I would see the urologist for a consult instead of just jumping into a cysto.
Only today I called to check on the appointment. I talked to teh phys asst. I explained that the advocate didnt think it right that I havent seen a dr yet since i was treated by a TURB in mid Dec. they still dont have my records!He told me it was redundant. they had no need for the reports, pathology and films they took! Once again he said that was all water under the bridge and we were basically starting fresh. Hw also told me that as the urology advocate he supersedes the main OP advocate.
Excuse me, but this has to be a conflict of interest. Doesnt the advocat need to be an unbiased 3rd party? How could I maked waves obout how I felt my treatment was going if he could just do whatever he wanted. It would be like the prosecutors officed providing a public defender out of their staff.

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