Coffee with Komen – Komen Tissue Bank

Ahhh, May. For most of central Indiana, the first week of May is about revving up for a month full of foot, bike, and car races. Rather than kicking into gear, however, two separate local organizations with similar names, different parent institutions, and a common goal are both taking a deep breath and settling into a little downtime. For these two organizations – the Susan G. Komen Tissue Bank at the IU Simon Cancer Center (Komen Tissue Bank or KTB) and Susan G. Komen Central Indiana, the local Komen affiliate – May is simply the month following April. Now, April…wow. THAT was a month!

Despite the fact at that “Komen” is part of our name, the Komen Tissue Bank is not part of Susan G. Komen the national breast cancer foundation. We are fully Indiana University, part of both the IU Simon Cancer Center and the IU School of Medicine. However, the two organizations seemed destined to cross paths. Both Susan G. Komen and the Komen Tissue Bank exist to prevent and put an end to breast cancer. Both organizations focus on racial and ethnic breast cancer disparities and are working to reduce/eliminate them. Both organizations strongly believe that supporting rigorous research is the path to reaching their goals.

Therefore, eleven years ago when the KTB approached Susan G. Komen national headquarters with a funding request, “Big Komen” – as we fondly label the Dallas-based foundation – didn’t just step up, they offered to allow their name be part of our name, the only Komen grantee to have been extended such an invitation. Eleven successful years later, it is a moniker we wear proudly, and which we work tirelessly to honor every day.

So, what happened in April? I thought you’d never ask. On April 13th the Komen Tissue Bank held their first (of two) tissue collection events of 2019. The KTB is a clinical trial, and the only known biobank in the world that collects healthy breast tissue from women with no sign of breast cancer, to be used as normal controls in breast cancer research projects.

Our fully clinical events in Indianapolis take place in the Women’s Clinic at the Simon Cancer Center, always on a Saturday. One-hundred-twenty women make appointments in advance to donate their healthy breast tissue at this event. Particular efforts are made to encourage women belonging to racial and ethnic minority groups to participate.

Over 150 volunteers serve as surgeons, radiologists, consenters, surgeon assistants, lab techs, and in numerous lay assignments. All day, women who have made appointments in advance arrive to voluntarily donate the precious gift of their breast tissue, for no other reason than that they want to help fight breast cancer and they understand that participation in research is one of the best ways to do so.

The atmosphere is joyous, vibrant, and alive. And right at the front entrance where the tissue donors are arriving and leaving, is a table fully staffed with Komen Indy volunteers. They handed out small gifts to our tissue donors and volunteers, answered questions about their upcoming Race for the Cure, and registered any who wanted to take part in it. Most importantly, the Komen Indy team offered consistent physical verbal support and encouragement to the altruistic women who arrived at the KTB tissue collection event, selflessly gave of themselves, and departed leaving behind not just breast tissue, but also hope and promise. Some of the Komen affiliate volunteers also decided to donate tissue, returning to their shift at the table with a new understanding of what it means to participate in research.

Fast forward to April 27th, another Saturday, another important breast cancer event. This was Indy Race for the Cure day, Komen Indy’s major annual event. Participants and volunteers numbered in the thousands rather than the dozens, but the similarities to the smaller event two weeks before were evidenced everywhere. Here, hope and promise were again in the air. People gave their time, talent, and treasure.

Over in the research and grants section the lines were long with people wanting to learn about how to help. And that’s where you could have found us, at the Komen Tissue Bank table, supporting our partners as they had supported us, because these two like-named and like-minded organizations completely understand that successfully conquering this disease requires working together.

Several KTB tissue donors and volunteers who were walking in the Race came by our table to say hello. I started thinking about what kind of person dedicates themselves to wholly altruistic endeavors and gives up two Saturdays in the same month. I decided to do a little research, asked someone if she would tell her story. Here is what she said:

“My name is Amanda Oliver and I am a breast cancer survivor/thriver. In 2003 I was diagnosed with an aggressive form of breast cancer but found out that because of research, after surgery, chemo, and radiation I was a prime candidate to take advantage of a new chemotherapy drug recently approved by the FDA. This chemotherapy surrounds the cancer cells and prevents them from spreading throughout the body. Sixteen years later I am a witness that research makes all the difference in the world.

When a church member shared information about the need for black women to donate breast tissue to the KTB for research I was all in. I asked if the tissue bank was interested in tissue from someone like me who is a survivor but has one unaffected breast. She said yes, so immediately I allowed her to sign me up, because I know that research makes all the difference in the world.

Breast cancer is a terrible thing to go through and I would not wish it on my worst enemy. So for the past seven years I’ve organized a team at my church in support of the Susan G. Komen Race for the Cure. During my illness, I remember feeling alone and helpless, because regardless of how much support we have, this is a walk that one must take alone. I started naming the team after someone in the church who was newly diagnosed, so one year we were Megan’s Miracles, another year Tracy’s Trailblazers. I wanted these women to feel supported.

Sharing my story with those who are still in the fight seems to give others a sense of calm for the time being. Many ladies have shared how appreciative they were for the support during their walk through breast cancer. The truth is they help me! I’ve been in their shoes and it gives me a sense of fulfillment knowing that something I did or said may have made a difference in someone else’s life.”

We at the Komen Tissue Bank are deeply honored to work alongside Komen Indy in a faceoff against breast cancer. We are a small but dedicated staff who will neither tire nor fade. We will keep reaching out particularly to minorities to encourage them to participate in research by donating tissue, and we will keep working to educate breast cancer researchers about the importance of using our high quality samples as normal controls in their projects. We know the cure is out there, and we can’t wait to find it.