By opting out of surgery, a courageous survivor may help redefine the cancer experience.
By opting out of surgery, a courageous survivor may help redefine the cancer experience
There was a time when Deanne Whitley’s Saturdays were spent getting her hair done at her cousin’s salon before visiting with her mother: a perfect weekend day, spent laughing with the people she loved. A deeply private person, she didn’t like to talk about her personal troubles very much. She kept herself to herself.
For 49 years, Deanne lived her life that way; when she faced a problem, she detached, then analyzed her next steps before proceeding. She wasn’t the kind of person to fall apart.
So when she noticed a lump in her breast while she was putting away dishes a few days after Thanksgiving, she scheduled an appointment with her primary care physician. She’d had a cyst in the past, and thought it had returned; she didn’t expect the call that came the day after her birthday, on Dec. 4, 2018, when she found out the lump was actually breast cancer. She would learn that it was specifically HER2 positive invasive ductal carcinoma — a term she didn’t recognize at first, but would become crucial to her survival.
Shocked, Deanne broke down in the privacy of her home, then pulled herself together. She sent a group text to her sister and cousin; she let them know about her diagnosis, but also told them she wasn’t ready to talk to anyone. Her son was away at college, and she wanted to break the news to him in person; she wasn’t sure how to tell her mother, who was recovering from esophageal cancer.
She took the next few hours to cry, and then her natural inclination kicked in. She told herself, “knowing is better than not knowing, so what are we going to do about it?”
Then she started jotting down all the questions she thought would be important: What stage is the cancer? What type is it? Is it treatable? What are my options? And then she went looking for a doctor.
Breaking through to push forward
The first thing she remembers about meeting her surgeon, Dr. Ron Johnson, was how quickly he saw through her detached façade.
“You’re not going to leave my office until you tell me how you truly feel,” she recalls him saying. She saw her whole life in front of her then, in a flash: all her fears, all the anxiety that had been building since her diagnosis. Finally, she was able to share them with someone, and almost immediately, she began to feel better.
“We talked often from that day forward,” she says. “I feel like he’s my surgeon, but I also feel like he is a family member.”
For his part, Dr. Johnson says many women first approach breast cancer the way Deanne did, hitting pause on how they emotionally process the disease until the doctor gives them a sense of where they stand. Helping patients break through that barrier is crucial to moving forward, he notes.
“Patients need to be involved and participate in their own care, and a critical element of that is they understand the disease to the best of their ability,” he says.
He compares his approach to the first day of class, giving the patient a “Breast Cancer 101” briefing tailored to her circumstances.
“There is definitely a cathartic effect to learning about breast cancer in general and your case in particular, because the imagination tends to run to a horrible place,” Dr. Johnson says. But “once they understand their own cancer and that there’s a plan in place for making them better, people tend to open up.”
A new treatment?
For Deanne, research created an option that also could pave the way for other breast cancer patients in the future.
Traditionally, the type of cancer that Deanne had — hormone receptor negative and HER-2 positive — would require a combination of surgery and chemotherapy. Ideally, doctors give the chemotherapy first to try and reduce the risk of the cancer spreading in the future. They then assess how well the cancer responded to the treatment to determine how much surgery is needed. Previous clinical trials demonstrated the safety of delaying surgery until after chemotherapy.
For some patients, all visible tumor cells in the breast and lymph nodes disappear through chemotherapy alone. For these women — known as “exceptional responders” — doctors questioned whether they needed any surgery at all.
To answer that question, researchers have developed a new clinical trial called the Exceptional Responders Initiative. Patients with no visible evidence cancer after completing chemotherapy can join. If a post-chemo biopsy shows no residual cancer, they skip surgery and move to radiation therapy. Doctors follow them carefully for evidence of any recurrence of the tumor.
Once particularly deadly forms of the disease, HER2 positive breast cancer and hormone receptor negative breast cancer — which together represent about 40 percent of all breast cancers — now are becoming easier to treat thanks to more targeted therapies. First identified in the early 1980s, HER2 is a growth-promoting protein on the outside of all breast cells. When tumor cells have high levels of HER2, they can grow and spread more aggressively than other types of breast cancer.
According to Dr. Vikram Gorantla, Deanne’s oncologist, the discovery of molecules that target HER2 positive and hormone receptor negative breast cancers “completely changed the equation for us … you are seeing some pretty amazing responses to treatment.”
The U.S. Food and Drug Administration approved the first molecule, trastuzumab, in 1998 and the second, pertuzumab, in 2013.
Perhaps more importantly, doctors also are now asking whether giving a patient chemotherapy first, before surgery, could lead to less invasive operations or even eliminate them altogether.
As Dr. Johnson explains the theory, by starting with chemotherapy in these cases, “we’re getting to the important part first,” then following up with imaging and biopsies to determine whether surgery is necessary.
To test this theory, Magee is part of a clinical trial called the Exceptional Responders Initiative, in which patients whose cancer is cured by chemotherapy can opt to skip surgery, while remaining under continuous monitoring to ensure their cancer does not return.
It represents a dramatic departure from the breast cancer treatments of the 1960s and 70s, when radical mastectomies and lymph node removal were the standard of care. If proven effective, the clinical trial could lead to a new protocol.
Redefining her experience
When she was first presented with the option of enrolling in Exceptional Responders, about a month after her chemotherapy treatments began in early 2019, Deanne was somewhat skeptical. Her treatment team assured her that the decision was wholly in her hands. By then, she had broken the news about her cancer to her mother, Barbara, who had endured chemotherapy and radiation but was now battling metastatic ovarian cancer.
Deanne and her sister were taking turns watching over their mother in her home, where she spent the end of her life. It seemed so far removed from those happy Saturdays they had spent together.
“I feel like I’m going to be somebody’s guinea pig,” Deanne confessed to her mother, when she described the clinical trial.
“If it’s going to help somebody else, why not?” Barbara asked.
“Because I’ll have to let people in,” her daughter answered.
“Maybe it’s God’s way of trying to tell you: It’s time to let people in,” Barbara said.
Deanne thought about that, and thought about generations of distrust among African Americans of the medical community; distrust rooted in fear and past experience that has contributed to widening disparities in health outcomes.
And so Deanne decided to try.
“I’m not going to let your experience define my experience,” she says. “You have to show people that there’s a different way.”
It would prove to be an incredibly difficult journey. When chemotherapy caused her to lose her hair, she looked in the mirror and broke down; her cousin and best friend, a hairdresser, fashioned a wig for her that made her feel more like herself.
As she underwent radiation treatments, she slept on the floor beside her mother, who was in the final stages of her life.
“She told me she was holding on to make sure I was OK,” Deanne recalls. “I told he that I was OK, but she wanted to make sure that I got through everything.” Deanne was with Barbara when she took her last breath.
She only took days off for her chemotherapy treatments; otherwise, she worked. Her cousin, who was her main support person, temporarily delayed a planned move out of state to see Deanne through her treatments.
But the long road paid off. After six rounds of chemo followed by hormone therapy and 23 rounds of radiation, a biopsy showed that she was cancer-free. To date, she has not required surgery.
‘We pinch ourselves’
According to Dr. Gorantla, better understanding of cancer’s biology has led to rapid discovery of new medications; clinical trials help doctors understand how best to deploy them.
“We pinch ourselves when we look at the complete response data,” says Dr. Gorantla, who estimates that it is as high as 60 to 70 percent. “That’s something to be astounded by.”
He sees Deanne every four months to ensure the cancer has not returned; Dr. Johnson sees her every six months, and she undergoes a mammogram, sonogram, and MRI. And thanks to her participation in Exceptional Responders, other women may one day follow in her footsteps and be cured without surgery.
“Breast cancer treatment has come a very long way compared to what the standards were in the ’70s and ’80s, and that knowledge has been advanced by clinical trials that have been performed in the past,” says Dr. Emilia Diego, who oversees Magee’s participation in Exceptional Responders. “As we learn more about the disease and refine the way we take care of women, the mantra has become very different: ‘How can we minimize what we give you, but still maximize benefit?’”
The trial continues to enroll women across three institutions, including Magee.
“It takes a special kind of woman, like Deanne, to push the boundaries and the barriers of science,” Dr. Diego says.
Dr. Gorantla agrees: “She is an incredibly courageous woman who has taken a leap of faith with us that could potentially affect so many other women down the road.”
The experience left Deanne forever changed, but unafraid.
“I’m not fearful,” she says. “When you hear cancer, you think death sentence. It may have been that way many, many years ago, but now it is very possible to live a full, normal life after cancer. I have to believe that’s going to be me.”
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