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Komen Tissue Bank co-founder: ‘We’re going to make a big difference’ in breast cancer research

Apr 11, 2024

Thanks to more than 5,000 women and men who donated breast tissue to the Komen Tissue Bank at the Indiana University Melvin and Bren Simon Comprehensive Cancer Center, researchers are making progress to better understand and find a cure for breast cancer.

Dr. Anna Maria Storniolo co-founded the Komen Tissue Bank at the Indiana University Melvin and Bren Simon Comprehensive Cancer Center. Dr. Anna Maria Storniolo co-founded the Komen Tissue Bank at the Indiana University Melvin and Bren Simon Comprehensive Cancer Center. Photo provided by the Komen Tissue Bank

The tissue bank, the world’s only biorepository for normal breast tissue, started with an idea sparked by the annual Amelia Project conference in Indianapolis in 2004.

“One of the scientists got up and said, ‘I’m really close to getting the answer I need, but I need some normal breast tissue as the control.’ And the conference presenter looked at her and said, ‘Well you’re going to wait a long time for that because it doesn’t exist,’” said Dr. Anna Maria Storniolo, an oncologist at the IU Simon Comprehensive Cancer Center. “So I’m sitting there next to a dear friend and patient advocate, Connie Rufenbarger, and she would not let this go. She said, ‘What do you mean we don’t have normal breast tissue? All you have to do is ask women to have a breast biopsy.’”

The trick was finding out whether women would be willing to make such breast biopsy donations. Storniolo first polled people at one of her children’s soccer games to see if it was possible.

“One Saturday I’m out on the field and I just said, ‘I’m going to do this,’ and I walked around and asked about 10 to 15 women, that I made sure I did not know, if they would have a breast biopsy for breast cancer research,” Storniolo said. “Everybody but one said yes.”

Storniolo and Rufenbarger started with doing blood drives for research use, and after a few small breast tissue collection events, their idea for the Komen Tissue Bank officially became a reality in 2007. Seventeen years later, normal tissue samples from the bank are being used in 216 research projects around the world and have led to more than 90 published breast cancer research manuscripts.

Connie Rufenbarger, left, and Dr. Anna Maria Storniolo at a Komen Tissue Bank donation event in 2010. Photo provided by the Kom... Connie Rufenbarger, left, and Dr. Anna Maria Storniolo at a Komen Tissue Bank donation event in 2010. Photo provided by the Komen Tissue BankStorniolo’s current focus, as a collaborator on research with Dr. Harikrishna Nakshatri, is to learn more about the genetic makeup of normal breast tissue across different demographics, including race, ethnicity and age. For example, in comparison to young white women, Black women younger than 35 have a higher incidence of invasive breast cancer and three times greater breast cancer mortality.

“What we’ve learned thus far is that the normal breast tissue in women of African descent differs from the Northern European women, differs from Asian women, differs from Native American women,” Storniolo said.

“In several of those cases there are clear links to pathways that are accentuated in the normal breast and then changed in their cancer. That leads us to really emphasize the importance of the Komen Tissue Bank because we’re looking at normal breast tissue to find the clues and cues to what happens when it becomes abnormal and cancerous. You need to start with normal. You can’t know abnormal if you don’t know normal.”

In her 30 years of breast cancer work, Storniolo said, it has also become more common for young people to be diagnosed with breast cancer. The youngest patient she treated for cancer was 19 years old. More have been in their 20s, and an even greater number have been younger than 40.

“The devastating thing is it has the capability of completely altering their lives,.” Storniolo said. “In general, younger women tend to develop more aggressive breast cancers at more advanced stages. In addition, women with familial genetic abnormalities develop breast cancer at a younger age.

“As you can imagine, you’re 19; it interrupts your education, and it changes relationships. It’s hard, and it breaks your heart.”

That’s why donations to the Komen Tissue Bank are crucial. When volunteers come to donate, information from their individual medical history and from their healthy breast tissue inform the research and make treatments possible.

The donation process is simple. Women and men ages 18 and older can participate in the organization’s tissue collection events, at least one of which is held every year at the cancer center in downtown Indianapolis. Participants sign up for an appointment, and the process takes 60 to 90 minutes total.

Donors start by filling out paperwork, then small vials of blood are taken before they extract the tissue in an examination room. Storniolo was the first to donate breast tissue to the tissue bank and donated again a few years later.

“We make a little nick in your skin, but the area is numbed first so it won’t be felt. You are likely to bruise a bit, though,” Storniolo said.

The tissue bank will hold its next breast tissue donation event April 27 at the IU Simon Comprehensive Cancer Center in Indianapolis. Those interested in donating can make an appointment or email alisnide@iu.edu for more information or to ask any questions.

“The Komen Tissue Bank allows women to be actively part of the solution,” Storniolo said. “These women understand that their tissue is going to make a difference and get us a cure faster. You don’t have to be a millionaire and give enough money to fund a building; you can give a little piece of yourself, which in many ways is much more precious.

“When a huge breakthrough is made in breast cancer and we actually crack the code, the women and men in Indiana are going to be able to say, ‘I helped do that.’ It’s been incredibly rewarding, and I think we’re going to make a huge difference.”

Komen Tissue Bank staff at one of the bank's tissue donation event. Photo provided by the Komen Tissue Bank Komen Tissue Bank staff at one of the bank’s tissue donation event. Photo provided by the Komen Tissue Bank

Author

University Communications and Marketing

Elizabeth Cotter

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