Overcoming the Odds

By Todd Travis

Twenty years ago, if a researcher was looking for normal breast tissue to compare with abnormal samples, they would have been out of luck. In fact, 18 years ago at a conference with some of the great medical minds in attendance, a scientist asked that exact question. The answer they received was that those normal breast tissue samples simply did not exist. That didn’t really sit well with Connie Rufenbarger, a two time breast cancer survivor and advocate who sat in the audience. She turned to Dr. Anna M. Storniolo, who was beside her and said “What do you mean they don’t exist?” Dr. Storniolo replied “Who’s gonna go and have a breast biopsy for research unless they have a reason to have it?” To which Rufenbarger replied “Well I think that’s the silliest thing I’ve ever heard. Have you asked people?”

Rufenbarger’s question sparked a curiosity that would change the landscape of breast cancer research forever.

Dr. Storniolo decided to go out and begin to ask that question and see what response she would get.

“I was a soccer mom at that point living in Carmel, so at Carmel Dad’s Club Field, I went up to ten people who I had never met before, and I asked them if they would consider doing a biopsy to help contribute to this kind of research. The answer from all of them was overwhelmingly yes!” remembers Dr. Storniolo.

Donor and plebotomist in the blood draw area.
(Submitted photo)

That’s when she realized that she needed to do something. She also learned a life-changing lesson of the importance of asking the simple question “why,” or more appropriately “why not?”

Once she got moving on this project there was no stopping her. In 2007 she went before the president of the Komen Breast Cancer Foundation and asked for their support. Without hesitation, she was extended the financial backing she had asked for and the Susan G. Komen Tissue Bank at Simon Cancer Center was born. It is the only normal breast tissue bio-repository of its kind in the world!

As of today, over 5,000 breast tissue samples have been collected as well as about 11,000 blood and DNA samples. In addition to the samples, mountains of data come attached with the samples which help the researchers understand a woman’s risk. That data is the key to getting the answers that are needed to move forward in cancer research.

Just a little over a year ago, Dr. Storniolo, who founded the tissue center, has passed her responsibilities into the capable hands of Dr. Michele Coté, who brings her expertise and passion to the table as she continues this legacy. While she is new to the Indianapolis area, she is no stranger to the tissue center.

Back in 2016, while working at the Karmanos Cancer Institute in Detroit, Mich., Dr. Côté actually hosted a collection event in partnership with the Komen Tissue Bank. For the event, they recruited 189 women who all gave a blood sample and a piece of their tissue. Of course, the ever-important data that helps this research was collected as well. At the time, she never would have imagined leaving Detroit, but life threw a curveball as it tends to do sometimes.

“I wasn’t really interested in moving, and I was dragging my feet a little bit when I was first asked to consider the position. Finally, Jill Henry, Director of Operations, convinced me to come and visit, and when I got here I was really able to see how great the opportunity actually was.” Dr. Côté shared.

As the Executive Director, Dr. Côté’s goal is to manage the scientific direction of the center and to make sure they are being good stewards of the data and of the samples that women and men donate to the tissue bank. Yes you did hear correctly that the Komen Tissue Bank is now also asking for samples from men as well.

To find more information about this wonderful resource, visit: komentissuebank.iu.edu

As you know, the breast tissue collection is Saturday, Nov. 11. Here are the event details:

What: Komen Tissue Bank at IU Simon Comprehensive Cancer Center breast tissue collection

When: 8 a.m. to 2 p.m. Saturday, Nov. 11

Where: IU Health Simon Cancer Center, 2nd floor, 1030 W. Michigan St., Indianapolis

Note: Pre-registration is required; appointments are limited. Call 866-763-0047.

Two-time breast tissue donor Heather Davis from Avon shares her experience:

“Upon hearing about the Komen Tissue Bank, I asked about whether I could be a potential donor. At the time, I was nursing my third daughter. It turns out that breast tissue from nursing mothers was the most coveted kind of tissue for research. I was told that I could donate, but not until I began weaning, which is what I did. Years later, I was asked to give a second time when I was no longer nursing so they could compare the nursing tissue vs. non-nursing tissue, and I agreed to that as well. Overall, the process is relatively painless and leaves a very minor scar. It’s so worth it for all the good it does for cancer research.”

Get to know your local Breast Center Resources:

Hendricks Regional Health Breast Center

Web: Mammography Services | Hendricks Regional Health

(317) 718-9000

Monet Bowling, MD

100 Hospital Lane, Suite 315,

Danville, IN, 46122

Bio: Dr. Bowling’s Story | Every Woman Has a Story (hendricks.org)

Anne Mattingly, MD, FACS

100 Hospital Lane, Suite 315,

Danville, IN, 46122

Bio: Physician Details (hendricks.org)