Plasmacytoid Urothelial carcinoma

djb2005
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7 years 3 weeks ago #53080 by djb2005

Replied by djb2005 on topic Plasmacytoid Urothelial carcinoma

Hope your feeling better lotech35!

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djb2005
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7 years 3 weeks ago #53079 by djb2005

Replied by djb2005 on topic Plasmacytoid Urothelial carcinoma

Thank you Cynthia. Wmy husband is seeing a. Team of Oncologist s and Urologist at University of Michigan in Ann Arbor. They were our 2nd opinion. They reacted swiftly for us. But this waiting 8 weeks from surgery is hard.

We are focusing on nutriton and walking.

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lotech35
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7 years 3 weeks ago #53064 by lotech35

Replied by lotech35 on topic Plasmacytoid Urothelial carcinoma

The news is always the worse next to waiting
I know. But at least knowing they can get a strategy! I had a bad reaction to my chemo and am still in the hospital as i write. But HOPE, is a powerful thing gotta just keep trying my Friend.

Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC.

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Cynthia
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7 years 3 weeks ago #53060 by Cynthia

Replied by Cynthia on topic Plasmacytoid Urothelial carcinoma

djb,

I am sorry you didn't hear better news. You are dealing with a very rare form of bladder cancer. I do not know what your situation is but if you are able I would strongly advise you seek a second opinion from NCI your contact there would be

Piyush K. Agarwal, MD
Head, Bladder Cancer Section
Urologic Oncology Branch
National Cancer Institute, NIH

They are in Bethesda MD. and have a very impressive team, if you are interested please email me and I will send you the exact contact information for his office. This email address is being protected from spambots. You need JavaScript enabled to view it..

As for distraction do things you enjoy and concentrate on getting into the best shape you can before treatment starts it will give you a leg up. With doctors help and permission, proper nutrition and exercise, even just walking will help.

Remember we are here for you.

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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djb2005
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7 years 3 weeks ago #53059 by djb2005

Plasmacytoid Urothelial carcinoma was created by djb2005

Yesterday (3/28/17) we received the phone call of the lab report from my Husband's RC on 3/16/17.

Plasmacytoid Urothelial Carcinoma - agressive. It was in 13 of the 36 lymph nodes removed and tested.

We are so scared.

We have to wait until 5/3/17 for CT Scans, Ultrasound, Blood drawn and meeting with Oncologist Team.

The waiting is torturous & miserable. Need distraction ideas, support.

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Plasmacytoid Urothelial carcinoma

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