Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.
Rare Community Profiles: Every Day for MBC: What Laura Wants You to Know about Metastatic Breast Cancer
There are many myths circulating about metastatic breast cancer: that it only affects older women. That it metastasized or spread from the breasts to other areas of the body, because someone didn’t seek treatment quickly enough. That you can tell if someone has metastatic breast cancer just by looking at them.
People affected by metastatic breast cancer are raising their voices to increase awareness, community, and support—and fight myths—through Every Day for MBC, where people within the community can come together on Instagram to share stories, knowledge, and advice.
This year, the women of Every Day for MBC chose to share their truths: what they want people to know about life with metastatic breast cancer. 35-year-old Laura, a mother to Lincoln and Lilah, jumped at the opportunity to share her story. She explains:
“It isn’t just about my story, but about raising metastatic breast cancer awareness. Metastatic breast cancer isn’t often talked about. People know about breast cancer but aren’t as aware of the impact of metastatic breast cancer. It is under-discussed and research to understand it is under-funded, and nothing is going to change if people are silent. So here I am breaking the silence.”
Laura’s Journey
At 30 years old, Laura found a lump in her breast. She was concerned, but not overly worried at first. Either way, she knew that a doctor’s visit was warranted. The doctor examined Laura but said it was likely nothing. However, she later ordered an ultrasound on Laura’s request. The ultrasound’s results were “concerning,” so Laura was sent to the hospital for further testing.
The only problem? The next available appointment wouldn’t be for over a month. At this point, Laura was now worried—and wasn’t okay with waiting. She sent her forms to a new care center after finding the Princess Margaret Cancer Centre. Just three days later, doctors called asking her to come in for a biopsy. Says Laura:
“If I had just gone along with the original plan, I would have been waiting for so long. I had an initial diagnosis and potential treatment plan in place, all before my initial biopsy would have taken place.”
When the biopsy and scan results came back, everybody was shocked. Not only was Laura diagnosed with breast cancer, but the cancer had already spread to her liver, despite having had no early-stage diagnosis. Laura shares:
“At the time, the prognosis for survival was just two to three years. It stopped me in my tracks. I thought my life was over. People say to enjoy life every day because you don’t know how long you’re here. You could get run over by a bus any day. But that bus isn’t actively chasing most people down.”
As Laura and her doctors discussed the next steps, she couldn’t stop thinking about her children. They were just two and five years old, respectively, and Laura couldn’t imagine her life without them. So she decided to fight and do everything that she could to tackle cancer, to face it head on.
However, Laura’s cancer was oligometastatic, which means that cancer cells travel from the breast to form a few, usually small new tumors – in her case, only one single metastasis. Doctors are still deepening their understanding of oligometastasis, but it’s believed that oligometastatic tumors are often more treatable and come with a better prognosis.
Understanding Metastatic Breast Cancer (MBC)
One in eight U.S. women will be diagnosed with breast cancer in their lives. Of these, one in three will develop metastatic breast cancer, also known as stage IV breast cancer. Many women remain undiagnosed until the cancer has already spread. Common metastasis locations include the lungs, liver, brain, and bones. Symptoms of metastatic breast cancer differ based on where the cancer has spread, but may include bone pain, shortness of breath or difficulty breathing, coughing, abdominal pain or discomfort, fatigue and general weakness, unintended weight loss, appetite loss, fever, and headaches.
Right now, there is no cure for metastatic breast cancer—but there are several different treatment approaches. For Laura, she explains:
“I started doing chemotherapy right away, followed by a mastectomy to address the primary tumor. Chemotherapy suppresses your immune system, so I had to wear a mask all the time and make sure the house was clean to reduce the risk of the kids bringing home germs from school. My initial treatment prompted what my doctors called a pathological complete response, meaning there were no active cancer cells present, all while continuing targeted therapy. I just had my 95th infusion. One of my treatments can cause heart issues so I try to walk three miles a day five days a week. That quiet time has been so beneficial for my physical and mental wellbeing.”
The Challenges of Living with Metastatic Breast Cancer
In many ways, Laura admits, she has been lucky in her journey. She feels like she has a fantastic support system around her and that she, in turn, has been able to provide comfort and hope to people who are newly diagnosed. At the same time, living with metastatic breast cancer has far-reaching and long-lasting effects and challenges. The first is mental health support. Laura shares:
“I don’t think mental health was ever discussed at diagnosis. I’m in a bunch of online groups, including Every Day for MBC, and I’ve heard that from other people as well: that there isn’t much in the way of mental wellbeing. This is a huge issue that we need to address because it can be incredibly overwhelming to receive that diagnosis.”
Mental health support can also be helpful along the treatment journey, which can be both physically taxing and emotionally exhausting. One main anxiety stressor for Laura is going to receive her scans. She explains:
“Getting scans tells you whether your cancer is spreading or not. If your life is going to be cut shorter or not. If it’s going to change drastically. Right now, there is no evidence of disease in my body—but the anxiety of figuring that out is something I have never before experienced in my life.”
One of the reasons why Laura feels it is so pertinent to share her story is to raise awareness of these challenges and to bring to light what people with metastatic breast cancer are facing every day.
Fighting MBC Myths
Another reason, which stems beyond the challenges, is that Laura wants to combat the existing myths. Because she has her hair, she says, she doesn’t necessarily look sick; people often forget that she has metastatic breast cancer or that she experiences symptoms from treatment. She urges people to remember that how someone looks physically isn’t necessarily an indicator of health or what is happening below the surface.
But most of all, she says, she wants people to advocate for themselves. In many cases, younger individuals who are pursuing a cancer diagnosis—or who are nervous after finding a lump—are brushed off by physicians who believe that they are “too young” for cancer. But, says Laura:
“You are never too young for cancer. Cancer doesn’t follow rules. Nobody in my family had cancer. I’m not high risk. I have no genetic issues. And there I was with stage IV cancer at age 30. I found a lump in September, got a biopsy in October, and my cancer was already metastatic. So don’t put off a visit. If it feels like something is wrong or it’s taking too long for a doctor to acknowledge what you’re going through, be your own best advocate. Be the squeaky wheel. Do whatever you need to do to be heard and taken seriously, because you and your health deserve it.”
Learn more about Every Day for MBC.
