Breast cancer: Two words no one wants to hear, but one in eight women in the U.S. will be diagnosed with it in their lifetime. It’s a diagnosis that does not discriminate against age, ethnicity, or gender, and that is where the important work of the Susan G. Komen Tissue Bank at the Indiana University Simon Comprehensive Cancer Center comes in.

“The Komen Tissue Bank is the world’s only biorepository for normal breast tissue,” said Dema Amro, Komen Tissue Bank’s head intern and a biology major at the School of Science at IUPUI. “Our main focus is on normal breast tissue so that we can send that to researchers, and they can potentially discover what causes cancer and how they can prevent it one day.”

The tissue is all provided through volunteer breast tissue donations. The process takes only 60 to 90 minutes, and it plays a critical role in medical research to find a cure.

Amro has volunteered at many tissue collection events, assisting with the biopsies. As an intern, she also calculates and organizes donation data so researchers can analyze statistics on patients’ potential risk of developing cancer and demographics such as family history, BRCA gene mutations and age.

It’s work that is personal to Amro. Her mom is a two-time breast cancer survivor, and Amro is now fighting the battle herself after being diagnosed last year at the age of 21. She is undergoing chemotherapy and continues to pursue her degree, despite the side effects.

“I was supposed to graduate in May, but I’ll have to push it back to December because I have to take it easy,” Amro said. “It’s been a difficult road, and it’s led me to even consider career changes. I’ve always been pre-med, and now I’m looking more into branching out and seeing some other careers that would fit a better lifestyle. But who knows because I still like medicine, and being the patient has broadened my perspective.”

Amro is also continuing her work as head intern at the Komen Tissue Bank. She was matched with the organization her freshman year through the Life-Health Sciences Internship Program at IUPUI and has now been part of the tissue bank’s efforts for three years.

“Being a part of the donation process and then becoming a patient myself truly showed me that if it weren’t for research that I wouldn’t be getting the drugs I’m getting today,” Amro said. “They wouldn’t know based on my hormones which drug would be better for which gene I have. They wouldn’t know without research.”

To date, there are over 90 published breast cancer manuscripts resulting from scientists’ use of tissue from the Komen Tissue Bank. It is currently being used in 171 research projects around the world, including by Harikrishna Nakshatri, chief scientific officer at the tissue bank and professor of breast cancer research at the IU School of Medicine.

“Breast tissue from the Komen Tissue Bank not only helped us to understand the biology of the normal breast in general, but also elucidate differences in normal tissue breast based on the genetic ancestry,” Nakshatri said. “Knowledge gained from such studies are critical to address disparities in breast cancer outcomes.”

The donation process

Over nearly 20 years, more than 5,000 people have donated healthy breast tissue to the Komen Tissue Bank. Women and men of all ages participate in the organization’s collection events, one of which is held every year at the IU Simon Comprehensive Cancer Center’s Women’s Clinic in downtown Indianapolis.

The entire donation process takes a little over an hour. Rachel Claire Henry donated as soon as she turned 18. Growing up, she had volunteered at collection events with her mom, but she said to actually donate was special.

“I was doing my senior research project with the KTB and then the donation event came around, and they needed more young people and especially young people of color,” said Henry, who was adopted from China. “So I knew I was contributing to a good thing, and I trust the research. I trust the science, and I know it’s for a good cause.”

To donate, donors start by checking in and filling out paperwork. Small vials of blood are drawn, and the donor is taken to an examination room where the breast is numbed with lidocaine and the healthy tissue extracted with a needle.

“It’s really easy,” Henry said. “They numb it, [I didn’t] even feel it, and then it’s over. You ice and it’s all good. What was really nice was that my mom was there, so bring someone along so then you don’t feel lonely and it’s less overwhelming.

“A volunteer will also escort you from station to station, so you’ll get to know a little bit about the community. And often they will be people who have already donated, so they’ll share their experience, and you can feel more affirmed about what is happening.”

It takes more than a hundred volunteers to put on a donation event, so for those not yet comfortable donating, volunteering at check-in or to run samples to the lab is a great way to see the process firsthand.

Henry has volunteered at collection events for the past three years. She said she always looks forward to it because it’s also an important way to make a difference.

“Not only do the donors go through with their donor escorts, but when they come back and they’re done donating, we all cheer and it’s awesome. It’s a really fun time, and it’s for a good cause.”

Making a difference

The Komen Tissue Bank’s next donation event will take place April 27 at the IU Simon Comprehensive Cancer Center in Indianapolis. Those interested in donating breast tissue can fill out the donor interest form, and they will be contacted about the next steps.

Most people over 18 who do not have breast cancer or breast implants can donate. The Komen Tissue Bank is especially looking for younger people — both women and men — and minority donors.

“Breast cancer differs based on demographics,” said Amro, who is Lebanese. “It’s more aggressive with Black and African American patients. Breast cancer is different with Asian patients here in the U.S. versus Asian patients in Asia, and even Hispanic and Latino donors.

“It’s important especially for younger folks. More and more young populations are susceptible to getting cancer, and getting that research is so important.”

Originally published by Elizabeth Cotter as “Breast tissue donation crucial to fight against breast cancer” on March 4, 2024, by Indiana University Communications and Marketing

Click here to read the recently published follow-up to this article.