GRACE & GRIT: Lynchburg native discusses her breast cancer battle and the path of self advocacy

Breast cancer survivor Alice Bedford Pleming
Alice Bedford Pleming sits near her County Line home. The Lynchburg native recently spoke to The Times about her 18-month battle with breast cancer and the importance of self-advocacy when dealing with the healthcare industry. (A Lynchburg Times Photo)

By Tabitha Evans Moore | EDITOR & PUBLISHER

Alice Bedford Pleming sits on her toile couch inside her County Line home steadying herself for this interview. She’s a private person — not prone to discuss her personal, medical history in the media. But today, she’s making an exception with the hope that her story will inspire someone else.

Beside her sits a large, black leather tote filled with print outs, notes scribbled on loose leaf paper, and copies of diagnostic reports. It’s a souvenir of sorts from her almost two year battle with breast cancer.

“It was always with me,” she says. “It’s never far from me even now. I have my doctorate. I’ve done a dissertation. This bag equals the same amount of work.”

The black bag — as she’s come to call it —is a tribute to Pleming’s dogged self advocacy. It’s a path that she says wasn’t always easy or comfortable.

“I went to three surgeons and four oncologists to get me where I am today.”

Research, second opinions, and medical records

Pleming and her husband, Edsel, were preparing to relocate from Norfolk, Virginia back to Tennessee a little over two years ago when she noticed a subtle change in her left breast.

“One night at my cousin’s house, I casually mentioned what was going on with my body and that I needed to get a mammogram,” Pleming said. “That’s when she reminded me of our family history of Paget’s Disease, a form of breast cancer.”

Pleming, a retired educator and ever the researcher, went home that night and looked up photos of Paget’s disease online.

“Once I saw them, I immediately knew that’s what I had,” she says.

That’s when her path of self-advocacy began. She pressed for the soonest available mammogram appointment and scheduled one in Nashville within a week. It came back clear but based on her symptoms, her doctor recommended that she see a breast surgeon.

“The tissue eventually found in my pathology was only two and two-and-a-half millimeters,” Pleming explans. “Mammograms, MRI’s, and other forms of pathology can only detect cancer tissue at five millimeters or larger. This is why early detection by being aware of changes in our own bodies is even more important than regular mammograms.”

The first surgeon told Pleming that he doubted she suffered from Paget’s Disease but indulged her in a biopsy. Less than a week later, she received a breast cancer diagnosis. The surgeon then recommended a lumpectomy.

“He was a little sassy and very dismissive to both me and Edsel,” Pleming says. “So we went to another breast cancer surgeon in Nashville for a second opinion, and then to University of Virginia Health, where we were living at the time, for a third.”

That’s when Pleming says she learned her first lesson in patient advocacy: always control your own medical records.

“The post office lost the CD with my Nashville pathology on its way to Virginia,” she says. “Keep up with your own medical records, and organize them so that you can easily share them.”

Pleming also became frustrated with the lack of guidance she received along her diagnosis and treatment. Some doctors view a request for a second opinion as a loss of faith in their ability to diagnose and care for you. To Pleming, each doctor she scheduled an appointment with gave her an additional opportunity to learn about her cancer and make informed decisions.

“Lots of people just go to the first doctor and do what they say. But I learned along the way that yes, they want to care for people, but it’s also a business, and they are in it to make money,” she says. “Basically, each doctor is offering you a certain set of skills, and it’s up to you to discern what might be the best fit.”

Pleming says eventually she weighed all the medical opinions and decided to go with a female surgical oncologist in Nashville that she seemed to click with during her appointment. She also says she knew she wanted to receive treatment in Nashville based on her and Edsel’s relocation to Middle Tennessee.

That surgeon recommended a lumpectomy and then finally, a mastectomy to be on the safe side. In true form, Pleming says she read about the advantages of a single versus a double mastectomy for days and hours before finally deciding to only remove the left breast and follow that with reconstructive surgery.

“Hopefully I’ll feel normal again once the reconstruction surgeries are completed,” she says.

Pleming says that one of the innovations that has helped her be her own advocate during the process are hospital-patient healthcare communications apps.

“Hospital systems use online platforms where you can communicate directly with nurses and other healthcare workers. They often get right back with you, which makes the process so much less stressful. They also loaded all my bloodwork and pathology right into the app for me.”

Because she had all her medical records at her fingertips, she could share them with family friends in the medical community for even more opinions.

The next phase of Pleming’s road to recovery involved weighing treatment options. Again, her self-advocacy came in handy.

Originally, when discussing surgery pathology, her surgeon initially recommended no further treatment. That’s when Pleming started asking questions and discovered that her doctor had made an honest mistake in offering the opinion based on the biopsy pathology and not the lumpectomy, which had revealed HER2-positive. That mistaken “all clear” could have been deadly.

“What if I hadn’t asked all those questions,” Pleming says. “How might my fate have been different?”

After receiving two oncologists’ opinions – one to do systematic therapy and one that chemo might not be necessary – something still nagged at Pleming. So, based on another recommendation, she sought out the help of Dr. Yardley at Tennessee Oncology and the Sarah Cannon Cancer Institute. Pleming got an immediate appointment – partially based on the fact that she could provide immediate access to her medical records.

“At first, I resisted the idea of being a guinea pig by participating in a study, but this study allowed me to take a smaller dose of the chemo drugs, and still get Herceptin to treat the HER2-positive invasive breast cancer, and that really appealed to me.”

Dr. Yardley suggested that Pleming participate in a breast cancer study involving KADCYLA, an antibody drug conjugate used as an after surgery treatment for HER2-positive early breast cancer. It is currently FDA approved to use in later stages of breast cancer. It’s a combination of Herceptin and the chemotherapy medicine emtansine. It works by delivering emtansine to cancer cells in a targeted way by attaching emtansine to Herceptin. Herceptin then carries emtansine to the HER2-positive cancer cells. This way, the emtansine is less toxic to healthy cells and more effective in treating cancer cells.

Pleming's "black book" at her County Line home
Pleming’s “black bag” sits on a table in her County Line home. It contains all the information she gathered during her breast cancer battle. “I’ve done a dissertation. This bag equals the same amount of work,” she says.

Everything happens for a reason

In the end, Pleming says she’s grateful for every bump in the road along her breast cancer journey because it’s taught her that she can trust herself.

“I suspect that on the outside looking in, I came across as this middle-aged Karen,” Pleming jokes. “But that never mattered to me. It’s my life and I felt justified in fighting for it. But I’m sure those doctors steeled themselves each time they spoke to me because I questioned everything they said.”

Pleming says balancing her southern belle, people-pleasing personality and the assertive, inquisitive side felt challenging at times. When she doubted herself, she thought about her deceased father – former Jack Daniel’s Master Distiller Jimmy Bedford – and thought, “What would Daddy do?”

“I possess so much of his personality,” she says. ” I could just hear him saying the whole time: Come on, Alice. Let’s handle it. Let’s get it done. Do it like you mean it.”

Today, breast cancer is no longer the first thing Pleming thinks of when she wakes up in the morning, nor the last thing she thinks about each night. Treatments will continue until the beginning of 2024, and the plastic surgeon plans to do the reconstructive surgery after that. She gets checked every three months to make sure that the cancer doesn’t return, but even if it does, she trusts that she’ll navigate through it with both grace and grit.

“At this point, I no longer live with fear,” Pleming says. “I believe that everything happens for a reason … even cancer.”

Plemings says her advice to anyone facing a battle with breast cancer is that they should always take someone they trust to doctor’s appointments for a second set of ears. She also says it’s important not to let yourself get overwhelmed.

“You’re so overwhelmed while they are giving you all this information,” she says. “You almost can’t take it in. But I’ve learned during this journey that everything that has happened so far is all very manageable.”

Pleming also wants to pay her blessings forward.

“If anyone in our community or even just reading this needs someone to walk through this journey with them as an advocate, please reach out to me. If someone wants to talk with me about the process, I’ve sure learned a lot and I’m happy to pay that forward, if it can help anyone else.”

To learn more about breast cancer prevention and early detection, visit the Susan G. Komen website or learn more about cutting-edge advances happening right here is Tennessee, visit the Sarah Cannon Cancer Institute website. •

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