“I’ve given of my time and given of my money, but to actually give of myself - it’s the most worthwhile thing I’ve ever done.” -Zeta Tau Alpha alumna, Lisa Tabor, on donating breast tissue
WHAT THE KOMEN TISSUE BANK IS
The Susan G. Komen for the Cure© Tissue Bank at the IU Simon Cancer Center ("Komen Tissue Bank") in Indianapolis is the only healthy breast tissue bank in the world. Women come from across Indiana and neighboring states to donate healthy breast tissue, oncologists come from all around to visit, and researchers across the globe submit requests to study the samples in the bank.
What started in 2005 as a small, Indianapolis-based initiative to collect healthy breast tissue from donors - then called the “Mary Ellen’s Tissue Bank” - has grown into a much bigger initiative, funded largely by Susan G. Komen for the Cure©, The Catherine Peachey Fund and individual donors. The goal is to provide researchers with healthy blood and breast tissue to use as comparison to diseased tissue in order to identify and understand changes.
The history and purpose behind the Komen Tissue Bank is too rich to cover here, so you can read more about it on their site. While it's housed at the IU Simon Cancer Center, the Komen Tissue Bank is mobile - the team can collect tissue at other venues, provided they have a hospital setting to work in. The Komen Tissue Bank aims for 100 donors per event and has recently been able to take their collection on the road to Kentucky and Illinois! To see a list of upcoming opportunities, check the donation events calendar on their website.
Any female 18 years or older who has never been diagnosed with breast cancer can apply to be a donor, and breast cancer survivors can donate if they have any unaffected breast. Applicants are then screened for allergies to local anesthetics, not having breast implants or breast reduction and not being on therapeutic blood thinners (aspirin is fine). Donors can give tissue a maximum of two times—once from each breast.
Women come as individuals and as groups to donate - moms, daughters and granddaughters, sisters, friends, coworkers and sorority chapters (particularly ZTA), all in hopes their breast tissue donation will help researchers find the causes and cures for breast cancer. In fact, the Tissue Bank even has a community journal in the waiting area so donors can share stories about what inspired them to donate.
As one donor - Barbara - exited all smiles, she said she had donated in honor of her mom. “Breast cancer runs in my family,” Barbara said. “My mom died of breast cancer three years ago, and early detection might have saved her life. I just want to see if I can help save someone else’s.” She snapped her fingers and said the actual tissue donation went “just like that,” and that everyone was so nice and so friendly that it was like having a spa day.
The Komen Tissue Bank collection takes place in the IU Simon Cancer center on set Saturdays when the clinic is closed.
From start to finish, the team is welcoming, informative and appreciative. With an almost one-to-one ratio of volunteers to donors during these donation events, they figuratively and literally hold your hand during this process. Roughly 70 volunteers in neon green t-shirts are spread among the seven different stations, and there are even runners to escort people from station to station. These are not one-time volunteers, either—most have a personal tie to the cause and make it a point to work the four or five time yearly donation sessions. Surgeons, doctors, nurses, scientists, phlebotomists and non-medical professionals are among the volunteers that donate their time, which keeps the operating costs for the Komen Tissue Bank down. While a breast tissue biopsy for medical purposes can cost up to $3,500, a breast tissue biopsy for donation purposes only costs $150 to cover the costs of collection and storage.
One of the volunteers along the way was Eileen Carroll. Her sister was the same Mary Ellen the original tissue bank was founded in honor of after she lost her battle to breast cancer. Mary Ellen’s son - Dustin - was volunteering as well, neither of them missing the opportunity to make tissue donors feel welcome and comfortable. Another volunteer was Diane Doxey, who has worked in the breast cancer field for quite some time. She was recently diagnosed - she, too, makes it a point to help with donation events.
To find out about volunteer opportunities, you can contact the Komen Tissue Bank at (317) 274-4051 or by email to firstname.lastname@example.org.
The donation process takes roughly one hour, and donors can keep themselves hydrated before, during and after with complimentary coffee, tea, water or fruit smoothies and energized with snacks from the sponsored barista bar.
Station #1 – Check in.
Station #2 – Consenter (a volunteer) talks you through the process, gives you your donation kit (paperwork and blood vials) and answers. She or he reviews your donor eligibility, talks about how the tissue will be used and provides a form releasing use of your breast tissue. Explains that there is no financial or diagnostic benefit for you from the tissue donation - it’s uncompensated and they can’t notify you if it turns out your tissue is cancerous since the researchers studying it either a) might only be looking at specific chromosome and/or b) they have no right to disclose it.
Station #3 – Height and weight. Knowing your BMI helps researchers studying whether obesity plays a role in breast health.
Station #4 – Electronic health questionnaire. This helps determines personal health factors like exercise levels, alcohol and tobacco intake, family history, etc. so researchers know more about your tissue.
Station #5 – Blood draw, the vials of which are used for breast cancer research as well.
Station #6– Breast tissue donation (more on this experience below).
Once you are taken into the hospital room for tissue extraction, a volunteer medical professional keeps you company the entire time and also is the medical assistant for the surgeon.
My volunteer was Janet Harlan, a retired breast oncology nurse who waited with me for Dr. Kennedy to arrive, answered my questions about the process, held my hand and distracted me with chatting when I saw Dr. Kennedy bring out the anesthesia needle, then held gauze on me for 10 minutes after everything was over. To help put any nervousness or discomfort in perspective: Janet said she’s seen all types of donors and plenty are squeamish or worried, but all have made it through just fine. She said she even helped with an 82-year-old woman who was the first to show up at a donation event in Lafayette - she was Jewish and wanted to make a contribution to science since the Ashkenazic Jews are at higher risk for breast cancer.
When Dr. Kennedy arrived and double checked that I didn’t have any known allergies to the local anesthesia, I lifted my left arm above my head while she lowered the part of the hospital gown that was open in front.
Step #1 – Antiseptic on skin.
Step #2 – Local anethestic shot to numb skin.
Step #3 – Fingernail-sized incision on side of breast.
Step #4 – Deeper anesthetic shot to numb breast tissue.
Step #5 – Wait a minute for the breast to go completely numb.
Step #6 – Three to five extractions (“core samples”) with equipment you can hear - it sounds like a dentist’s drill - but can't feel. The samples are placed in a small container with your unique donor ID then taken away to be placed in liquid nitrogen for storage. The Komen Tissue Bank keeps a sample from every donor who’s made a donation, and the rest are sent to researchers who request them if the Komen Tissue Bank proposal review committee approves. Core samples can be sent as a whole or cut into slivers, depending on the research needs (overall tissue study vs. specific DNA or chromosome study, like IU oncologist Dr. Bryan Schneider’s current research).
Step #7 – They hold gauze on the incision for 20 minutes total.
Step #8 – They provide cold compress to reduce swelling, which is why it’s ideal to wear a sports bra to the donation so you can keep the pack in place better.
Surprisingly, the most uncomfortable step was the anesthetic—after that, I felt nothing and experienced no residual pain in subsequent days. While they don’t encourage any strenuous activity for a couple days so you can give the incision time to heal, my only reminder of the donation was the bulky gauze under my bra. When I pulled it off the next morning, I discovered that the cut was even smaller than I expected—about the size of a pinky fingernail. With time and Neosporin, it will be almost or completely invisible.
If you are getting a mammogram relatively soon after the donation, be sure to tell them you recently donated tissue so they know what's going on in the image - the Komen Tissue Bank recommends that you don't schedule a mammogram for at least one month afterward. While the breast tissue won’t regenerate, it eventually will redistribute after several months.
The fact that breast tissue doesn’t grow back or fix itself is also why early detection and treatment is so critical. Cancer does not stay contained - the cells spread much more rapidly than non-cancerous cells, extending past the breasts and moving to other major organs or bones.
If you have ever had a mammogram, the Komen Tissue Bank requests a copy of the digital image - having a mammogram connected to your tissue sample (by barcode number, not your name) makes the sample more valuable because a researcher can also see the whole breast image. The type of research being done with samples from the Komen Tissue Bank is what will help study the process of how these healthy cells turn malignant so they can identify why and when they’re starting to change so they can detect and treat breast cancer before it’s even detectable by mammogram. This is why so many women are willing to donate their tissue, knowing that they are making a physical contribution to finding the causes and cures for breast cancer.
To show these donors one more gesture of appreciation before they leave, the Komen Tissue Bank provides a goodie bag on the way out that includes a parking validation pass, cold compress and additional education materials. Although for most, it's the gift of being able to give that matters to them. As tissue donor and Zeta Tau Alpha alumna, Lisa Tabor, put so eloquently: “I’ve given of my time and given of my money, but to actually give of myself - it’s the most worthwhile thing I’ve ever done.”
If you want to find out more about the Komen Tissue Bank and how to volunteer or donate, you can go to their website.
The Susan G. Komen for the Cure Tissue Bank at IU Simon Cancer Center is called the “Komen Tissue Bank” because of sizable funding from the global Komen Research Grants Program. The Tissue Bank operates completely independent of Komen and its Indiana affiliates.
The Central Indiana Affiliate of Susan G. Komen for the Cure (“Komen Central Indiana”) is one of 124 Komen affiliates across the world. It is dedicated to raising funds and awareness for outreach, screenings, treatment assistance and survivor support to women in its 21-county service area. Twenty-five percent of every donation goes to headquarters, which is what helps fund the Komen Tissue Bank and other initiatives through its Komen Research Grants Program.