Tennis, anyone?

Helen Connors, 75, has an incurable disease. But you’d never know it to look at her. Helen is living with metastatic breast cancer. Occasionally she thinks about the seriousness of her diagnosis, but mostly she’s too busy playing tennis, dining with friends and spending time with family.

“I can’t really say it’s been difficult,” says Helen. “I feel well.”

Meeting her opponent

When she was 69 years old, Helen learned during an annual mammogram she might have breast cancer.

She was surprised, but not shocked. “My mother had breast cancer, my sister died of ovarian cancer, my brother had prostate cancer and a couple nieces have had breast cancer,” said Helen. “Why not me?”

Within a week, Helen had an appointment with oncologist Carol Fabian, MD, at The University of Kansas Cancer Center. Dr. Fabian diagnosed Helen with stage 2, estrogen-positive invasive lobular carcinoma in her right breast.

Calling the shots

As a National Cancer Institute-designated cancer center, The University of Kansas Cancer Center offers numerous clinical trials exploring new drugs, diagnostic procedures and therapies available to patients. Dr. Fabian told Helen about a study testing a combination of estrogen inhibitors. Helen took part in the three-month trial designed to shrink her tumor prior to surgery.

Helen also had to weigh the pros and cons of a single or bilateral mastectomy, plus several breast reconstruction options. The breast cancer team explained the details of each option, but ultimately the decision was up to Helen. She was keen to minimize her recovery time.

“I was 69 years old. I lived alone. I elected to do the right mastectomy only,” she said. “I also chose implant reconstruction. If I were younger, I might have made a different choice.”

A total pro

If Helen’s ability to make quick work of difficult decisions seems superhuman, consider her background.

Helen earned a bachelor of science in nursing from Villanova University, a medical/surgical nursing degree from Russell Sage College, Troy, New York, and a doctorate from the University of Kansas.

The University of Kansas School of Nursing hired Helen in 1979. She rose through the ranks, succeeding in many leadership positions, including associate dean of integrated technologies and executive director of the KU Center for Health Informatics. In 2013, she retired after 35 years of dedicated service.

In retirement, Helen continues to practice her craft. She is a professor emerita of the School of Nursing and teaches an online graduate nursing course for George Washington University in Washington, D.C.

While she has extensive experience in the healthcare field, she does not consider herself an expert on cancer. So, she asks lots of questions.

“It’s so important to have a relationship of trust with your providers,” she said. “You want them to tell it like it is. But you also have a voice in the decision-making. I listen to the evidence, then decide what is the best choice given my situation.”

Delay of game

During Helen’s pre-operation assessment, an EKG revealed an electrical abnormality in her heart – a left bundle branch block. This condition is an abnormal electrical conduction in the heart. While Helen had no symptoms, she was scheduled for an echocardiogram and stress test.

“A left bundle branch block can be associated with coronary artery disease,” said Ashley Simmons, MD, Helen’s cardiologist. “Helen has a family history of sudden cardiac arrest. We wanted to be certain her heart was healthy enough for surgery.”

The tests showed no evidence of blockage in Helen’s heart and she was cleared for her mastectomy.

Serious challenges

During surgery, 19 lymph nodes were removed from Helen’s right side and 16 tested positive for cancer. Because of the number of positive lymph nodes, Helen’s cancer was upgraded to stage 3. When more than three lymph nodes are affected, radiation is required to destroy any lingering cancer cells.

The cancer center in Lee’s Summit is near Helen’s home, so she drove herself to and from most of her radiation appointments. “It was a five-minute drive there. A five-minute treatment. Then, five minutes back home,” she said.

Helen also had the option of having systemic chemotherapy, but physicians reviewing her case were divided on the benefit she would receive. She opted to forego chemotherapy.

“I appreciated the options,” she said. “I had choices and I’m very happy with the route I took. There are a variety of treatments that can be personalized. Cancer is not a one-treatment-fits-all disease.”

Unfortunately, in June 2013 Helen learned the cancer had metastasized to her bone. When breast cancer spreads beyond the original site, it’s called metastatic breast cancer (MBC) or stage IV breast cancer.

In addition to estrogen inhibitors, Dr. Fabian prescribed a targeted bone therapy. An injection of Xgeva® once every six weeks can slow the growth of bone cancer. It also prevents bone loss, making patients less likely to experience fractures.

When it came time for Helen’s breast reconstruction surgery, Dr. Fabian recommended she have a hysterectomy. The multidisciplinary team coordinated their efforts to complete both procedures during one surgery, with gynecologist Madhuri Reddy, MD, performing Helen’s hysterectomy.

When Dr. Fabian chose to focus her practice solely on cancer prevention, Helen’s care shifted to oncologist Qamar Khan, MD.

“Once a patient has MBC, our goal is not to kill the cancer, but to control it,” said Dr. Khan. “Patients like Helen require treatment for the rest of their lives, so we want to make their quality of life the best it can be without too many side effects.”

Nurse practitioner Stephanie LaFaver is an integral part of Helen’s cancer team. She was in graduate school at the University of Kansas School of Nursing during Helen’s tenure. Stephanie said she is honored to care for Helen. “She’s an amazing and inspiring woman who has had a phenomenal career,” said Stephanie. “And she continues to live her life to the fullest.”

Playing through adversity

In August 2016, Dr. Khan and his team discovered “hot spots” on Helen’s liver scans, indicating her breast cancer was continuing to metastasize.

Stephanie helped Helen understand the progression of her disease. “Helen doesn’t want her information sugar-coated,” she said. “She wants to know what’s going on and figure out a way to deal with it.”

Dr. Khan recommended another clinical trial for Helen. The goal of the study is to test two dosage levels of an FDA-approved oral chemotherapy medication called Xeloda®. One group receives the standard dosage; the other receives a lower, more patient-friendly dosage.

“Xeloda is one of the best drugs for breast cancer,” he said. “Unlike intravenous chemotherapy, this pill can be taken for many years with limited side effects. We are observing very good results among patients who are taking the lower dose. They have fewer side effects with the same efficacy.”

Helen finds the side effects minimal. “There’s some redness, swelling and soreness in my hands and feet, but it does not keep me from doing anything,” she said. “I play tennis three times a week and walk two miles on the other days.”

Advantage, Connors

Today, Helen is six years beyond her original breast cancer diagnosis and five years past her metastatic breast cancer diagnosis. Her scans are stable.

She has no doubts about choosing The University of Kansas Cancer Center for her personalized cancer treatment. It’s not only the largest cancer center in Kansas City, but also the only NCI-designated center in the region.

“As an academic medical center, the cancer center is involved in the latest research,” she said “Why would I leave town when I have access to everything here? I wouldn’t go anywhere else.”

Like so many cancer patients, Helen stresses the importance of having a good support system. She stays in touch with friends and family members, including one son in town and one in Texas.

Dr. Khan said he admires Helen’s ability to remain upbeat. “Although our appointments involve some very serious discussions about her care, Helen always keeps it light with friendly banter about who has the better basketball team, Villanova or KU,” he said. “She seems to prefer the Wildcats.”

Helen takes a positive and pragmatic approach to MBC. “I treat this like any other chronic disease,” she said. “I don’t sit around waiting for the other shoe to drop.”

Instead, she slips on both shoes, ties them up and heads to the tennis court.

This individual participated in a clinical trial of an investigational treatment. Clinical trials are different from standard medical care. As with all research studies, clinical trial participant outcomes vary. Before participating in a clinical trial, it is important to discuss the risks and benefits with your healthcare provider.