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Just Diagnosed

9 years 4 months ago - 9 years 4 months ago #35701 by CatherineH
Hello Margellen... You are exactly where I was last year when a small mass was found in my bladder by my gynecologist on Jan 4th. Total and complete shock and disbelief. I had never ever even had a UTI. It's like they are talking about someone else and you can't bear to even think the word "cancer". It is devastating news to hear.

I finally calmed myself down by thinking that it did no good to panic or stress out until I knew what I was dealing with, and had a plan and a good medical team. My local uro had little experience with my type of tumor, so I had to wait two weeks for my "expert" consult with my surgeon he referred me to at Vanderbilt. The waiting is hard not knowing what you may be facing. Much easier said than done, I know.

It is wonderful that you found this site at this point. I would have been a lot less scared if I had had these guys for support in the beginning. As Jim pointed out, BC isn't the end of the world and is very treatable with many options to tailor to your particular situation.

I will keep you in my thoughts as you work through these very scary first few weeks.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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9 years 4 months ago #35688 by sara.anne
Hi Mar!! You have a lot of friends right here to hold your hand. You are very fortunate to be able to go right away to one of the best in the country...This is SO important.

Right now...with the "shakes"....just try to roll with the punches. I remember coming home from my diagnosis and very coldy and calmy (ha ha) thinking "Now I know what I will die from."
Well, that wasn't quite the case, and with the help of this group I have had lots of BCG treatments and am doing great. After a few weeks pass, you will be better able to think about this without the shakes!!

Good luck to you and you are started on the right path.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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9 years 4 months ago #35686 by Patricia
mar..you will need that path report and the slides from you TURB..which is what you had..a trans urethral resection of the bladder..all you need do is first call the hospital where you had it done and ask for the pathology report and go sign for it...Pathology can also pack up your slides and send to Penn or you can hand carry them...kind of depends on how fast they are??
If you're doing a CT scan that would be put on disc immediately and just ask for a copy so you can take it with you.
Are you still breathing? Please do!! We'll help you through.
pat

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9 years 4 months ago #35685 by Margellen
Thanks for the welcome, and the review of Penn. I made an appt. for the end of the month with Malkowicz.

As for your confusion, sorry. I'm just learning the terminology. I had a cysto under anesthesia and the growth was removed and biopsied.

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9 years 4 months ago #35681 by Patricia
i'm a bit confused by your saying it was superficially removed?? Did you have a TURB in the OR or did he just remove in the office?
you definately need to set up a second opinion now..and Dr. Malkowicz is one of the top bladder cancer experts around
http://www.pennmedicine.org/Wagform/MainPage.aspx?config=provider&P=PP&ID=1398
He's capable of doing all three diversions if need be......but we don't know if you're at that point anyway. So a second opinion from him would be an expert opinion.
Meanwhile take a deep breath. If you can't quit shaking ask the doc for a script for low dose Xanax or Ativan. I know its scary ...we've all been there. But you're on the right path. If you still want doctors from MSK or Hopkins let me know but Malkowicz is highly regarded.
pat

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9 years 4 months ago - 9 years 4 months ago #35679 by Humpy
Margellen wrote:How can I stop the shakes?

You have taken the first step. You are here.
Good people. Good info. Sorry you had to find us.
BC is not the end of the world. Take a deep breath.

Jim

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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