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Linda, 60, enjoys hiking and spending quality time with her family and friends. She has also been living with metastatic breast cancer (MBC) since 2006. But this is not her first time with the disease. She had been diagnosed and treated with an earlier stage of breast cancer three years prior and, like 30% of women with early-stage disease, she later developed metastatic breast cancer.
Her husband remembers the day they heard the news.
“There were tears involved, but there was also action to figure out what we were going to do next.”
MBC, also known as stage IV breast cancer, is the most advanced form of the disease and occurs when the cancer has spread from its original location in the breast to a distant location in the body.
With her diagnosis of MBC, Linda knew she wanted to educate people about the disease and become an advocate for others who were facing the same difficult choices she did.
The journey of decision-making
While MBC is considered incurable, it can be treated. Knowing what breast cancer type a person has can also help them face their diagnosis head-on to make informed decisions about their treatment.
Speaking with a medical team — which may include a medical oncologist, advanced care practitioner, nutritionist, mental health professional, physical therapist, pharmacist, surgeon, radiologist and/or an oncology nurse practitioner — about a care plan at or soon after diagnosis is an important part of the cancer treatment journey. This multidisciplinary team supports the person diagnosed with cancer every step of the way to help them understand the information learned through tests and to provide guidance through decisions about their care. Together, care providers and the patient can have meaningful conversations about goals of treatment, priorities in managing adverse events, and quality of life.
In the case of MBC, the care team will recommend biomarker testing and may also engage in conversation about the need for genetic testing to help provide a clear picture of the unique characteristics of the person’s disease. With many types of MBC, it’s important to know what type a person has so they can make informed choices—as some therapies are designed to work in cancers that have specific biomarkers or genetic mutations.
Both forms of testing can empower people with breast cancer to work with their care team to decide on the right course of treatment for them. Upon further testing by her medical team, Linda found out she has HER2-positive MBC. HER2-positive MBC is the result of cancer cells that make too much of the protein HER2, causing breast cancer cells fueled by HER2 to grow. Approximately one in five people diagnosed with breast cancer is HER2-positive.
Linda was initially afraid when she heard she had HER2, as she knew it was an aggressive form of the disease. But knowing what she was up against and talking to her care team about the treatment options specific for her HER2-positive MBC, made her feel more confident about the decisions she was making.
She wishes she had known more about her breast cancer—especially her breast cancer type and the chances for her early-stage disease to recur as MBC—earlier on in her diagnosis. Now, when she talks to people who are first diagnosed with breast cancer, she stresses the importance of finding out more information and being their own advocate with their care team.
“Don’t be afraid to ask questions. And if your questions aren’t answered, ask again and again until you have enough information to move forward.”
Finding your support network
A diagnosis of metastatic breast cancer is devastating, and people can often feel alone and overwhelmed by all the decisions they need to make so quickly. Connecting with others after a metastatic cancer diagnosis can have a positive impact and provide hope for others.
For Linda, having the support of the MBC community is key. Her main goal is to make a difference in the lives of others living with metastatic breast cancer and to provide inspiration by example. Linda hopes that her journey to gain knowledge about her disease, make decisions in collaboration with her care team, and live life to its fullest will help others do the same.
There are tough days along the way and when those come, Linda reaches out to her MBC community as a powerful way to find support and strength.
“They understand, even when I don’t have the words to express myself fully. I’m filled with gratitude that I have them in my life.”
To learn more about metastatic breast cancer, download educational resources, and hear from others living with the disease, visit LifeBeyondPink.com.