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My Bonus-Mom: New Diagnosee

11 years 10 months ago #18493 by Patricia
Well Lombardi Cancer center at Georgetown Medical is a NCI designated center...don't know about bladder cancer...however there is a number you can call and supposedly someone will answer your questions. Give it a try
http://lombardi.georgetown.edu/contact/cancerline.htm
I don't know about consult with Johns Hopkins...but why not go there?
Pat

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11 years 10 months ago #18486 by mrscarpediem
Hi everyone!

So - its been a rough week.

Apparently there was no mix up in the bone scans, the medications and stress my bonus-mom was under caused her to "imagine" the doctor coming in and telling her her bone scan was clear. So -- she has a few places (4) with lesions but she does not feel pain in any of the sites, even if you touch them. So that's a positive sign.

The big crisis of late has been her kidney function. the tumor is blocking her right side and they have done four surgeries to attempt to clear it. Without it functioning its causing all sorts of headaches and its resulting in us not being able to move her anywhere.

Thankfully progress has been made in the last two days, however. They have scheduled (or are scheduling) an appointment for her with someone at Georgetown Medical -- I've posted to the metastatic board, but in case anyone has opinions, I'd love to hear it.

Apparently they do consults with Johns Hopkins for each case diagnosis and treatment plan???

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11 years 11 months ago #18238 by mrscarpediem
We don't either.


I will post again as soon as we can get her somewhere that gives diagnosis and treatment...not just pieces of the puzzle.



Thanks everyone.!

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11 years 11 months ago #18187 by Gene Beane
Well they will clear up any question on what is there and what isn't . Thats why a second opinon is necessary, and a major cancer hospital,,,,please give us an update, I don't really understand what she has,,tumor wise? Stage wise? And a diagnosis? 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 #18151 by mrscarpediem
Thanks guys,

John Hopkins is closer actually, I work/live in the DC area so having her this way is a bit better for me. The "meeting" is to have her case reviewed with a specialist from out there...I'm confirming that this weekend.

Last night the bone scan results showed it was in four spots. (one doc said it was clean, six hours later a new oncologist said it was in four spots)

They did a small biopsy on some tissue to confirm it was bladder cancer when she was having stints/shunts (not sure of the right word) implanted for her kidney problem. She was in such a bad state I think their primary goal is to stabilize her kidneys ASAP and that's the "delay" of sorts happening right now.



The tumor was described to me as expanding and contracting with the muscle...ugh. I wish I went to medical school to understand these things better.




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11 years 11 months ago #18127 by Gene Beane
I can't express enough the urgentcy to get her to a hospital who specializes, whether its THE CLEVELAND CLINIC OR JOHN HOPKINS IN BALTIMORE. Do it sooner rather than later, her life depends on it,,she deserves the best care, and these two hospitals will give it to her...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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