Constance E. Norton Video (Text Version)
Title: Consumer Perspective
Consumer: Constance E. Norton, San Francisco Bay Area Affiliate, Susan G. Komen for the Cure
About 8 years ago I went in for a routine mammogram and got the call that no woman really wants to get that I needed to come in and have surgery, as it turned out that I had ductal carcinoma in situ.
I opted to get a double mastectomy because the thought of having cancer looming over me forever was something I really didn't want to deal with.
…and it was good that I did because there actually was more cancer lurking in—in the breast. And then about 3 months ago I found out that I was BRCA-2 positive after another family member was diagnosed with breast cancer, I ended up getting tested and found out that I was as well.
…Having had the experience of breast cancer, one needs to be able to make sense out of it. You have this feeling of impotency that you know what can I do, how can I make this a meaningful experience. I’m an attorney by profession and so I thought that I could use my personal skills for advocacy in order to hopefully make things better for other women. For me it’s personally fulfilling because it allows me to feel like I’m actually making a contribution and making it worthwhile that this happened.
I got involved with DoD when I was nominated by the San Francisco Bay Area Affiliate of Komen for the Cure. I started in approximately 2007 and actually I’ve come back every year since—it’s exciting; it’s difficult; you have to labor over the grants with a lot of time and a lot of love.
BCRP is one of the few scientific funding methodologies where consumers are involved. And having us here at the meetings, having us in Peer Review and Programmatic Review effectively keeps the scientists on their toes. We help the scientists keep the end-game in sight and the end-game is a cure and the end-game is better treatment and earlier detection and not simply just a scientific pursuit for the pure intellectual challenge of it. Resources are precious and life is precious, and BCRP I think recognizes that.
Make no doubt about it, the scientists are very respectful; they really do value the consumer’s perspective, they seek it out. It’s motivating to them and that’s heartwarming as a consumer because it allows me to feel as if my participation here is actually meaningful.
When you’re sitting in those grant review rooms you think to yourself well perhaps maybe this is the one. This is the grant that will find that cure or will make that breakthrough.
As consumers we’re asked to focus on impact. And frankly that is the focus for us as consumers right from the beginning.
I understand that as a scientist one may want to answer an interesting question or pursue you know some burning issue but for me as a consumer ultimately my goal is to make sure that my daughter doesn’t have to go through this.
One thing that I intend to discuss with my colleagues when I leave this meeting is the need for better tissue banks actually. A number of scientists have mentioned that they don’t have enough access to tissue and so there needs to be more initiatives, there needs to be more awareness amongst the breast cancer community where consumers are just dying to help that there’s a pragmatic thing that we can do and that’s to you know affirmatively donate tissues.
You know, hundreds of thousands of us are getting you know body parts lopped off left and right you know for both for the treatment of this disease and—and diagnostically and why—where is that tissue going?
And so to the extent we can carry back this message to the community and to our doctors in particular and say look you know next time you have to do a mastectomy, for example, and then in my case I—I had a double, right. So I had a healthy breast and a—and—and impacted breast and that healthy breast tissue certainly could have been utilized—for research for normal. So you go back to your doctor and let him or her know that you know get that informed consent from the next patient because it’s important.