Being Each Other’s Hero: Facing MBC Together

August 25, 2020

At diagnosis, approximately 6% of breast cancers are metastatic breast cancer (MBC), which although treatable is not curable. Experts predicted that 276,480 women and 2620 men would receive such a diagnosis in 2020.

Strong. Vulnerable. Open. Closed off. Depressed. Angry. Optimistic. Happy. Humorous. Spiritual. Together, these describe just a modicum of the emotions patients with metastatic breast cancer (MBC) face when they receive a diagnosis of what is the most advanced stage of breast cancer.1

No matter the site, or sites, of metastasis— bones, brain, even liver—cancer that originates in breast tissue before spreading is treated as breast cancer because of where it originated.1 At diagnosis, approximately 6% of breast cancers are metastatic.2 Experts predicted that 276,480 women and 2620 men would receive such a diagnosis in 2020.3

For men especially, MBC can be difficult to talk about, much less open up about. Men represent only 0.95% of the full number of cases of MBC in women.

In 2016, Kirby Lewis of West Virginia was already a stage 2 breast cancer survivor, for which he had a mastectomy in 2012—but not before firing his first doctor who told him men don’t get breast cancer—when his cancer recurred, spreading to his spine and both lungs. He had MBC from which his “lungs lit up like Christmas trees,” he said.4

He has managed to remain optimistic despite his diagnosis, which brought with it 15 weeks of treatment with chemotherapy and various other medications, followed by a switch to a different oral medication and a years-long remission before a small tumor began to grow once more. He attributes his attitude to his own personal experiences. As a former mortician embalmer for years, Lewis said he wasn’t exactly immune to death, but he had a good understanding that it is part of life.

“My perspective all along has been that we don't really get to choose or pick things the way we would like things to be in our life,” he said. “We are dealt this hand and what really matters is how we live it. I’ve tried to be a realist.”

Lewis also credits his faith and his military combat experience for helping him realize how precious life is and making it easier for him to cope with his MBC diagnosis.

He is 1 of 9 patients, and the only male, with MBC who serve as the faces of Facing MBC Together from Athenex Oncology, a US-based division of global biopharmaceutical giant Athenex, “to provide accessible information and multiple resources to oncology customers, including healthcare professionals, patients, and caregivers, who may benefit from Athenex’s broad pipeline of innovative oncology products.”5

Both the website and mobile app of Facing MBC Together were built to address the isolation patients with MBC often feel by providing practical and emotional support in the forms of educating patients and the public on:

  • What the disease is: it’s stage 4, or advanced breast cancer6
  • What a diagnosis means: the disease may not be curable, but life expectancy is on the rise7
  • Treatment options: surgery, targeted therapies, and radiation, among others, are all available, and there are close to 300 ongoing clinical trials.8

The overarching message of the campaign is that patients with MBC do not have to go it alone, which Facing MBC Together fosters through its digital offerings that include a customizable calendar supporters can consult to fulfill a loved one’s everyday requests such as meal or grocery delivery and a real-time video channel, which enables live one-to-one or group chatting. There is also a health update blog and an encouragement-infused photo and video gallery.5

The germination of the campaign began when Tim Cook, senior vice president of Global Oncology Marketing at Athenex Oncology, joined the company 2 years ago.

“My group was tasked with preparing to launch the company’s lead molecule, oral paclitaxel and encequidar, in MBC. We wanted to create a culture looking at the whole person, not as an MBC ‘patient,’ and to fully understand these peoples’ treatment needs beyond the disease,” Cook explained in an interview with The American Journal of Managed Care®. “To do this, we conducted a lot of primary and secondary research, including partnering with the cancer support community to conduct a new study to better understand what people living with MBC struggle with on a daily basis. The study revealed an overwhelming sense of isolation and loneliness felt after diagnosis.”

At the heart of the campaign’s success is that it is fully customizable, he points out, thereby providing “a unique experience for anyone impacted by MBC,” especially patients, which helps to address the often overwhelming isolation and loneliness that follows their diagnosis, connects them with various types of support, and inspires them through the experiences of others.

The campaign is also diverse in that the 9 patients who serve as its faces include individuals from all walks of life and whose MBC diagnosis either followed a history of breast cancer (both early- and late-stage disease) or was de novo disease. The patients were found through the partnerships Athenex formed with several patient advocacy groups, Cook noted.

Alongside Lewis, Stephanie Walker of North Carolina is one of those 9 patients, and her MBC was a de novo diagnosis, meaning this was her first encounter with breast cancer and it had already spread.9

“I forgot again!” she recalled when describing how life got in the way beginning in late 2015 and continuing in the months leading up to her diagnosis. As a result, her yearly mammogram around her December physical didn’t happen until June of the following year. “In July, I get the phone call that I need to come back because they had seen something, and of course I hung up on the lady 2 or 3 times because I thought she had the wrong number.

“I was diagnosed stage 4 right out of the gate. Asymptomatic, no lumps felt, no dimples, no drainage, no nothing. And it has been a hellacious ride ever since,” she continued, explained that she fired her first oncologist following poor treatment by his staff, when Walker insisted on asking “too many questions.”

However, having been a nurse for 40 years meant she knew many oncologists, and she reached out to one, who arranged for her to get all of her tests done, even though he was out of the country. It also meant a lot of assumptions based on her medical background and not being assigned a nurse navigator because she herself was a nurse. She is learning to ask for help, which is something she tries not to do and finds hard to do.

“At 61 years old now, I'm finally learning to reach out for help,” Walker said.

Reaching out and speaking up to help their fellow patients are why Lewis and Walker gladly became faces of this campaign and why they call each other “my hero.”

In particular, Lewis views himself as an advocate for genetic testing among men for a predisposition to breast cancer, which he defines as “breast cancer” and not “male breast cancer.”4

“You don't have to be concerned just with your daughters, you have to be concerned about your sons as well,” he emphasized. “Genetically speaking, DNA passes obviously from our mother, but it can also pass from our father and from our father’s mother or our mother’s father, and those are points of consideration that need to not be overlooked and frequently are.”

Walker, too, believes in putting it all out there, in letting the care team know what you are going through and filling them in on the undertone of it all, because they already know but are waiting for you to open up.

“They weren't blind to the depression or the sadness or the exhaustion or the fatigue,” she said. “They had seen it; they were just waiting for me to voice it. And it's been wonderful. It truly has been a wonderful being able to have a support system.”

Patients being reticent to ask for help but needing support is why Facing MBC Together exists and why it is even more important now during the coronavirus disease 2019 pandemic, which not only magnifies the loneliness and isolation patients with cancer feel but also poses additional health risks, Cook noted.

“In some ways, the pandemic provides anyone with a glimpse into what it’s like to live with a disease like MBC, as many people are required to be isolated from loved ones. But the physical isolation and anxiety caused by the pandemic also poses real health risks to those living with MBC,” he stated. “The development of Facing MBC Together started well before we had any glimpse of our new normal, but we take some comfort in knowing that the campaign can help to address the compounded feelings of isolation for anyone impacted by MBC.”

References

1. Metastatic breast cancer. Susan G. Komen. Updated May 14, 2020. Accessed August 13, 2020. https://ww5.komen.org/BreastCancer/MetastaticBreastCancerIntroduction.html

2. Breast cancer: facts & figures 2019-2020. American Cancer Society Inc. Published 2019. Accessed August 13, 2020. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2019-2020.pdf

3. Breast cancer – metastatic: statistics. Cancer.net. Published January 2020. Accessed August 13, 2020. https://www.cancer.net/cancer-types/breast-cancer-metastatic/statistics

4. Lewis K. Kirby’s story. Facing MBC together. Accessed August 13, 2020. https://www.facingmbctogether.com/stories/kirby

5. Athenex Oncology launches Facing MBC Together campaign to address isolation for people living with metastatic breast cancer. News release. Athenex. June 13, 2020. Accessed August 14, 2020. https://ir.athenex.com/news-releases/news-release-details/athenex-oncology-launches-facing-mbc-together-campaign-address-0

6. What is MBC? Facing MBC Together. Accessed August 14, 2020. https://www.facingmbctogether.com/metastatic-breast-cancer/what-is-mbc

7. What a diagnosis of MBC means. Facing MBC Together. Accessed August 14, 2020. https://www.facingmbctogether.com/metastatic-breast-cancer/diagnosis

8. Treatment for MBC. Facing MBC Together. Accessed August 14, 2020. https://www.facingmbctogether.com/metastatic-breast-cancer/treatment

9. Metastatic from the start. Breast Cancer Network Australia. Accessed August 19, 2020. https://www.bcna.org.au/metastatic-breast-cancer/metastatic-from-the-start