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Cancer Experience Registry

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simplelife4real View Drop Down
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Joined: Oct 24 2013
Location: Crossville, TN
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Post Options Post Options   Thanks (0) Thanks(0)   Quote simplelife4real Quote  Post ReplyReply Direct Link To This Post Topic: Cancer Experience Registry
    Posted: Nov 27 2013 at 9:21am
I went to my first breast cancer support group meeting in our area yesterday.  At the meeting they were encouraging anyone with cancer to sign up for something called The Cancer Experience Registry.  Here is some information about it taken directly from their home page.

If sharing your cancer journey could enhance the lives of others would you help? You can!

What is the Cancer Experience Registry?

It is a community of people touched by cancer. A primary focus is on collecting, analyzing and sharing information about the cancer experience including the social and emotional needs of the patient and their family throughout the cancer journey.

Why is it important?

There is a need to include social and emotional support as an integral part of comprehensive quality cancer care. This has been proven to improve quality of life and may also improve health outcomes of cancer survivors. The information collected from the registry will be used to inform the future of cancer care, develop innovative programs and offer services to more effectively address the emotional and social needs of people affected by cancer.

Who is eligible to participate?

Anyone who has been diagnosed with cancer at any time. Whether you have been recently diagnosed, are undergoing treatment or are years past treatment, you are eligible to participate. By joining you can make a difference in improving the quality of life and health outcomes of people touched by cancer.

How to participate?

If you have ever had cancer, please join now and share your experience with us. Also, if you know somebody who has been diagnosed with cancer at any point please encourage them to join. All personal information is protected.

I signed up yesterday and filled out the questionaire.  It takes about 15 minutes to complete.  Here is the link to the site if you are interested.

http://csc.cancerexperienceregistry.org

DX Aug 2013 @ age 60, Stage 2b, grade 3, 2.3 Cm, node positive, BRCA-; neoadjuvant taxolx12 and ACx4:
2/13/14 LX and ALND-2mm residual in 2 nodes
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 28 2013 at 12:48pm
This looks like a good program.  By sharing experiences others might gain more insight to help others going through a cancer diagnosis.  Thanks for posting.


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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