June 05, 2023
Cancer Survivor Month: Finding Common Ground
Cancer is everywhere.
So many kinds of cancer. So many people, each with an individual lived experience, all over the world. It seems impossible that all those different people could have much in common.
Turns out, though, they do.
Cancer Survivor Month is observed each June to honor and support anyone who has received a cancer diagnosis or who lives with an elevated family risk of cancer, known as a “previvor.”
Cancer is the second leading cause of all deaths worldwide. Millions of new cases are diagnosed each year, and survival rates vary widely among populations and types of cancer.1
What happens after a cancer diagnosis is different for everyone. But patient advocates say that almost every survivor craves two things: information and community.
Stephanie Birkey Reffey, PhD, is director of patient advocacy and alliance relations at Exact Sciences. A lymphoma survivor, Reffey says that Exact Sciences’ precision oncology work centers on delivering trusted information to patients after a cancer diagnosis.
That includes Exact Sciences’ Oncotype DX Breast Recurrence Score® test to help patients with some types of invasive breast cancer understand whether they are likely to benefit from chemotherapy. More than 1 million patients have benefited from Oncotype DX® tests, helping them avoid over-treatment or under-treatment in breast and colon cancers.
Exact Sciences’ introduction of the OncoExTra™ test in February 2023 gives patients information to help guide treatment of advanced solid tumors. The test examines the DNA and RNA of a patient’s tumor to help identify the treatments or clinical trials that may be most appropriate based on the tumor’s unique makeup — helping to inform the right treatment for the right person at the right time.
“All of our tests are aimed at helping patients get the right treatment quicker,” Reffey says. “When people get the right treatment, they have better outcomes.”
Reffey’s team ensures that the company incorporates the voice of the patient into everything it does, making sure that it’s delivering the best experience possible for patients. To do that, the team collaborates with nearly 60 patient advocacy organizations that work on behalf of patients, survivors, and those at risk of cancer.
One of those groups is One Cancer Place, founded by colorectal cancer survivor Erika Hanson Brown. The organization connects survivors across all cancer types and uses education to help patients “take hold of their own survivorship and get through this horrible maze called Cancer,” Brown says.
One Cancer Place’s KAPA Institute (that stands for Kick-Ass Patient Advocates) works to teach participants the language of cancer, using an immersion approach that mimics proven language-learning methods.
When people know the language of their disease, they can better advocate for themselves.
Another resource that One Cancer Place puts into its participants’ hands is information about biomarkers — the genes, proteins and other substances that provide data about each person’s unique cancer. Patients and doctors can use cancer biomarkers to inform treatment decisions.2
Through biomarker education, “we have patients who are turning themselves into colleagues of their doctors. The doctors we work with love it because they love an informed patient,” Brown says.
It’s critical that people get the facts they need to advocate for their own health: “I'm at the mercy of the system unless I know something and can push back,” she says.
Sue Friedman agrees. She’s the founder and executive director of Facing Our Risk of Cancer Empowered (FORCE), which works to improve the lives of people facing hereditary cancer.
Friedman is a breast cancer survivor. She now faces a rare thyroid cancer that resulted from her breast cancer treatment. Despite being trained in veterinary medicine and working in cancer advocacy, she’s still finding it challenging to navigate her latest cancer experience.
“The complexities of medicine — this is not easy. Even as a 25-year advocate, a 27-year survivor, someone with a medical background, with all my privileges and all I know and have learned, being thrust back into this has been incredibly hard,” Friedman says. “For someone with less training, less privilege, less lived experience, I can only imagine how much harder it is.”
FORCE serves up information on an array of topics across cancers and inherited risk. Friedman is inspired every time the group’s resources make a difference for a patient.
“There’s nothing greater that the feeling of someone coming to you and you have the resources they need to make decisions or access care,” she says. “It’s an incredible feeling.”
Brown remembers what it felt like to go through cancer without a network.
“When I was being treated, I had no way to connect with other survivors. I didn’t meet people during treatment because I was sick. I felt [terrible],” Brown recalls. “I got through treatment, and it was, ring the bell and ‘Bye, see you later!’ I had no one to seek out to see how they’d survived.
“I made it through treatment — now what?”
Meeting a survivor like her was a revelation, Brown says. She was thrilled to learn from someone who had been there.
“You want people to show you how they made it. You find a survivor and do what they do. Or maybe you find that they haven’t had to change their way of life,” she says.
Experiences shared in “the survivorship tribe” help people find common ground to map their own path forward, Brown says.
Friedman says it’s essential to make space for all people impacted by cancer. That includes the previvor community, many of whom have not always been welcomed among cancer survivors.
“Before FORCE, people with mutations but without cancer — they really had nowhere to go,” Friedman says, noting that she has a BRCA2 gene mutation associated with an increased risk of breast cancer. “Someone could have seen every family member on one side of their family die of breast cancer, but they weren’t welcomed at cancer survivor groups because they didn't have cancer.”
Those people were making the same kinds of decisions as people who did have cancer, such as considering surgeries, without the support of a community. FORCE created a safe space for them, Friedman says.
“They might not have cancer, but they know cancer,” she says.
So many kinds of cancer. So many people, each with an individual lived experience, all over the world. It seems impossible that all those different people could have much in common.
Turns out, though, they do.
Cancer Survivor Month is observed each June to honor and support anyone who has received a cancer diagnosis or who lives with an elevated family risk of cancer, known as a “previvor.”
Cancer is the second leading cause of all deaths worldwide. Millions of new cases are diagnosed each year, and survival rates vary widely among populations and types of cancer.1
What happens after a cancer diagnosis is different for everyone. But patient advocates say that almost every survivor craves two things: information and community.
The importance of information
Stephanie Birkey Reffey, PhD, is director of patient advocacy and alliance relations at Exact Sciences. A lymphoma survivor, Reffey says that Exact Sciences’ precision oncology work centers on delivering trusted information to patients after a cancer diagnosis.
That includes Exact Sciences’ Oncotype DX Breast Recurrence Score® test to help patients with some types of invasive breast cancer understand whether they are likely to benefit from chemotherapy. More than 1 million patients have benefited from Oncotype DX® tests, helping them avoid over-treatment or under-treatment in breast and colon cancers.
Exact Sciences’ introduction of the OncoExTra™ test in February 2023 gives patients information to help guide treatment of advanced solid tumors. The test examines the DNA and RNA of a patient’s tumor to help identify the treatments or clinical trials that may be most appropriate based on the tumor’s unique makeup — helping to inform the right treatment for the right person at the right time.
“All of our tests are aimed at helping patients get the right treatment quicker,” Reffey says. “When people get the right treatment, they have better outcomes.”
Reffey’s team ensures that the company incorporates the voice of the patient into everything it does, making sure that it’s delivering the best experience possible for patients. To do that, the team collaborates with nearly 60 patient advocacy organizations that work on behalf of patients, survivors, and those at risk of cancer.
One of those groups is One Cancer Place, founded by colorectal cancer survivor Erika Hanson Brown. The organization connects survivors across all cancer types and uses education to help patients “take hold of their own survivorship and get through this horrible maze called Cancer,” Brown says.
One Cancer Place’s KAPA Institute (that stands for Kick-Ass Patient Advocates) works to teach participants the language of cancer, using an immersion approach that mimics proven language-learning methods.
When people know the language of their disease, they can better advocate for themselves.
Another resource that One Cancer Place puts into its participants’ hands is information about biomarkers — the genes, proteins and other substances that provide data about each person’s unique cancer. Patients and doctors can use cancer biomarkers to inform treatment decisions.2
Through biomarker education, “we have patients who are turning themselves into colleagues of their doctors. The doctors we work with love it because they love an informed patient,” Brown says.
It’s critical that people get the facts they need to advocate for their own health: “I'm at the mercy of the system unless I know something and can push back,” she says.
Sue Friedman agrees. She’s the founder and executive director of Facing Our Risk of Cancer Empowered (FORCE), which works to improve the lives of people facing hereditary cancer.
Friedman is a breast cancer survivor. She now faces a rare thyroid cancer that resulted from her breast cancer treatment. Despite being trained in veterinary medicine and working in cancer advocacy, she’s still finding it challenging to navigate her latest cancer experience.
“The complexities of medicine — this is not easy. Even as a 25-year advocate, a 27-year survivor, someone with a medical background, with all my privileges and all I know and have learned, being thrust back into this has been incredibly hard,” Friedman says. “For someone with less training, less privilege, less lived experience, I can only imagine how much harder it is.”
FORCE serves up information on an array of topics across cancers and inherited risk. Friedman is inspired every time the group’s resources make a difference for a patient.
“There’s nothing greater that the feeling of someone coming to you and you have the resources they need to make decisions or access care,” she says. “It’s an incredible feeling.”
The importance of community
Brown remembers what it felt like to go through cancer without a network.
“When I was being treated, I had no way to connect with other survivors. I didn’t meet people during treatment because I was sick. I felt [terrible],” Brown recalls. “I got through treatment, and it was, ring the bell and ‘Bye, see you later!’ I had no one to seek out to see how they’d survived.
“I made it through treatment — now what?”
Meeting a survivor like her was a revelation, Brown says. She was thrilled to learn from someone who had been there.
“You want people to show you how they made it. You find a survivor and do what they do. Or maybe you find that they haven’t had to change their way of life,” she says.
Experiences shared in “the survivorship tribe” help people find common ground to map their own path forward, Brown says.
Friedman says it’s essential to make space for all people impacted by cancer. That includes the previvor community, many of whom have not always been welcomed among cancer survivors.
“Before FORCE, people with mutations but without cancer — they really had nowhere to go,” Friedman says, noting that she has a BRCA2 gene mutation associated with an increased risk of breast cancer. “Someone could have seen every family member on one side of their family die of breast cancer, but they weren’t welcomed at cancer survivor groups because they didn't have cancer.”
Those people were making the same kinds of decisions as people who did have cancer, such as considering surgeries, without the support of a community. FORCE created a safe space for them, Friedman says.
“They might not have cancer, but they know cancer,” she says.
The power of both
Patty Lechner works in patient support at Exact Sciences. She gives patients information about the company’s Cologuard® test, a non-invasive stool-based test intended to screen adults age 45 and older at average risk for colorectal cancer. And she can identify with the variety of patients’ emotions: Patty received her own positive screening result and was later treated for Stage 1 colorectal cancer.
When callers are upset, “I can honestly say with a full heart that I get it,” Lechner says. “I’ve been through it. I know what your next steps are. I get why you’re scared.”
Lechner says that she doesn’t feel like a cancer survivor. She simply feels more educated than she was before her diagnosis. Her work combines information and support to assist people in their own cancer journeys, whatever they may be.
No matter how things unfold, “we’re here to let them know that they're not alone.”
References:
1. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/global-cancer-facts-and-figures/global-cancer-facts-and-figures-4th-edition.pdf
2. https://www.cancer.gov/about-cancer/treatment/types/biomarker-testing-cancer-treatment
