INDIANAPOLIS, Ind. (WANE) When Connie Rufenbarger was diagnosed with breast cancer at the age of 34, she couldn’t just sit there. She had to act.
“You have to do something. And so I started a not-for-profit to raise money for research and went to a lot of training,” Connie said. “I became known in the world of breast cancer because I was one of the few non-medical professionals. I had the training and the experience to do it. It wasn’t a plan. It just happened.”
Over the years, her advocacy stretched from her home in Warsaw to Washington D.C., where she served on a National Institutes of Health panel.
“The question was ‘What are the obstacles to finding a cause and a cure for breast cancer?’ And the number one from the bench to the clinic was a lack of understanding of the normal breast, which I thought was very very odd,” Connie said. And that led her to set out to find a way to collect and store breast tissue from healthy women.
She said she approached one researcher, who was skeptical. “He said, ‘I can’t help you,’ which would be money. There’s not money just lying around – and a biorepository is a huge endeavor. He said, ‘You have no idea what you’re talking about but I won’t stop you.’
About that time, Connie crossed paths with breast cancer researcher Dr. Anna Maria Storniolo.
“Having been in a university for a long time, I immediately put up all the usual barriers,” recalled Dr. Storniolo. “‘There’s no way anybody’s gonna let us do this. It’s a little crazy. You’re asking women who have nothing wrong with them to come forward and have breast biopsies. Who on the face of the earth would ever do that?’ And she said to me simply – which stopped me in my tracks – ‘Have you asked them?’
That’s what they did. They asked. And women answered.
“At the time I had young children and was a soccer mom. And one Saturday I went out on the fields and asked probably 20-25 women that I didn’t know – and I explained the concept. That’s the beauty of this is that it’s a very easy concept. To understand what’s going wrong in cancer you have to understand how the normal breast develops. Because in any abnormal situation, you have to have a clear sense of what the normal is,” said Dr. Storniolo.
That’s how the Komen Tissue Bank at the IU Simon Cancer Center was born.
10 years later, it’s the only place in the world where researchers can access normal breast tissue. They’ve held donation drives all across the country – including Fort Wayne – to get samples from women of all ages, races, and ethnic backgrounds.
So far, they’ve collected samples from 5,000 women.
What they’ve learned from those samples is changing the way they look at breast cancer. For example, breast tissue from African-American women is very different than that of Caucasian or Hispanic women.
“Although that might seem obvious, it really wasn’t understood. And when you think about the implications of that, you really have to start thinking that the preventative approaches to different races are going to have to be different,” Dr. Storniolo said. “One size is not gonna fit all.”
Connie said, “One thing we’ve learned from the biorepository is that an African-American breast, a Caucasian breast, a Hispanic breast – they’re actually different when you get into the molecular study. So why do African-Americans have a lower incidence of breast cancer but higher mortality? It’s because their breasts are actually different in the ducts where the cancer originates. So instead of one treatment fits all, now we’re gonna look at a genomic profile of the woman who has breast cancer. So you want to know who’s at high risk, what can you do to change the environment within the duct that causes the cancer to progress into cancer – go from a normal cell to a malignant cell, and then how do we treat individual woman?”
In the course of the research, they also made an astounding discovery. In about 30 cases, tissue donors developed breast cancer two to three years later. Because cancer doesn’t develop overnight, scientists knew that the tissue in those samples had already began to undergo changes that led to cancer.
Researcher Natascia Marino calls those cells “susceptible normal.”
“For breast cancer researchers like me, those specimens represent a window – a snapshot of the early stage of breast cancer development, allowing us to study and to understand better what happens before the cancer is clinically detectable. Which was not possible before,” said Marino. “That’s important because until now, the only resource the researchers had was to compare the tumor with the healthy tissue surrounding the tumor, which is not really healthy. Reports show that those healthy tissues around the tumor have already some changes from the genetic point of view.”
Everyone involved in the tissue bank – from advocate Connie Rufenbarger to the scientists behind the microscopes – is quick to point out that the information that comes from this research is shared worldwide. But they admit that what’s happening in Indiana is groundbreaking.
“By doing this, Hoosier women that have already donated will be part of history and that future women from this state will be part of history. In my soul I believe that,” Dr. Storniolo said excitedly. “I believe that when we find a cure or cures for this disease, this state – because this is where this tissue bank lives – will be able to say, ‘We did it. We were physically part of the answer because we could not get to this answer without this resource.’ They were part of it. This belongs to them.”
Researchers plan to hold an event in New York next year to collect samples from women there. They also hope to host another collection drive in Indianapolis soon.