Over 2 decades ago, Tracy felt a pea-sized lump in her breast. She was a new mom, living in a new city far from family and friends. A mammogram didn’t show anything, but a follow-up ultrasound revealed invasive ductal carcinoma.
Tracy’s treatment decisions revolved around her son, Trent. She determined that she couldn’t do radiation and be a full-time mom, so she opted for a mastectomy. Her mom, also a breast cancer survivor, traveled to support them and encouraged Tracy to leave the house when she could.
Three years later, Tracy began to experience back pain while pregnant with her daughter, Taylor. While the pain was severe, it was attributed to her pregnancy. But when the pain didn’t go away after delivery, Tracy visited an orthopedic surgeon.
An MRI revealed Tracy’s initial breast cancer had metastasized to her bones and spine, and later to her brain and liver. Tracy was diagnosed with metastatic breast cancer (MBC).
As a 21-year survivor—18 years with MBC—Tracy has learned much about herself and her disease throughout her journey. This is what Tracy wants you to know about living with MBC.
Breast cancer is everywhere and touches almost everyone.
Tracy’s neighbor, Amy, was diagnosed with breast cancer shortly after the two became acquaintances. Tracy and Amy grew closer over walks through their neighborhood. Amy then learned she also had Stage 4 breast cancer. Tracy shared how Amy joined her community of friends: “I invited her to come play Mahjong. Oddly, we have 5 breast cancer survivors playing Mahjong with us—I don’t know how that all happened, because none of us knew each other before.”
Not all breast cancer survivors are the same, and we shouldn’t treat them the same.
Because of their terminal diagnosis, many MBC patients feel like they fall into a separate category of breast cancer patients. It is important for their unique and specific fears and uncertainties to be heard and understood. Tracy shares the need and desire to distinguish between types and stages of breast cancers, as well as between cancer patients themselves.
“One lady at Bible study was pregnant when she was diagnosed with Stage 4. And everyone kept trying to hook us up. Like, ‘Oh, you need to meet Linda. You need to meet Linda.’ I just wanted, for a little bit, to be the only person in the world who had cancer. I didn’t need to hear about other people at the time. I wasn’t ready.”
Eventually, Linda and Tracy met and became friends.
“Linda was the one who got me to go to a support group. I fell in love with the leader, LeeAnne. I really fell in love with the people. LeeAnne started noticing there were so many of us with Stage 4, and we all didn’t want to talk about certain things in front of the other ladies. So, she started a Stage 4 group, and that was so awesome. We were able to talk about wanting to plan our funerals, what happens if we die, and what happens to our kids. We were able to talk about our fears. There were 10 of us in that group. We educated each other, and we supported each other.”
We all deal with cancer in different ways, and that’s okay.
The ways we process and respond to trauma, such as a breast cancer diagnosis, are different, just as we are all different. Tracy shares how each member of her family was uniquely impacted and the different ways they stepped in to help.
“My husband did a lot of laundry while I was sick, because that was something he could control, and he could do. When I was first diagnosed and had my surgery, my mom came to help. My sister came to help. My husband’s sister came to help. But when it was Stage 4, it looked different with how [my husband] dealt with it.”
Tracy continued by sharing that she and her husband don’t remember certain experiences the same way. “He didn’t realize how sick I was. When my mom came to visit, he picked her up at the airport, and she asked, ‘How’s Tracy?’ He goes, ‘Oh, she’s good.’ Meanwhile, I had been in the bed and couldn’t stop vomiting for a few days. Mom called 9-1-1 that night, and I went to the emergency room and spent a week and a half in the hospital.”
“I didn’t fault [my husband] for not seeing [how sick I was]. I think he was exactly what I needed. I don’t know if I would have fought as hard if he had been doing everything for me. He was there in every way he could be there.”
Tracy also shares how her diagnosis affected her son, Trent, who was 3 at the time. “Trent had a lot of tantrums—he really struggled, because people kept coming in to take care of him. If I wasn’t home, he would fall on the floor and cry. He’d hold my hand when I was laying on the floor throwing up. He got the brunt of the cancer diagnosis.”
For Taylor, Tracy’s younger daughter, she shares: “Cancer had always been part of [Taylor’s] life. When I had the brain metastases and had brain surgery, Taylor and Trent came to visit me at the hospital. [Four-year-old] Taylor came running up to me, and she said, ‘Mommy, Mommy! Trent said they took your brain out!’ I said, ‘No, baby. They took the bad parts.’”
You have to have hope.
Hope ebbs and flows—it can look different day to day, month to month, and year to year. And for those with MBC, hope may look different from those with other stages of breast cancer.
Tracy shares how her definition of hope and success changed over time. After the initial MBC diagnosis, her hope was mainly to meet small-term goals. As time went on, Tracy transitioned from striving to meet short-term goals to putting her hope in seeing long-term goals met.
“At first, I said, ‘I want to see Trent go to kindergarten.’ Then once he went to kindergarten, I was like, ‘I want to see Trent graduate from high school.’ And now I want to be a grandmother. In the beginning, you didn’t even want to plan for next week. You don’t know if you’ll feel well enough to go on vacation or be able to even have lunch with someone. So, I tried to baby-step it out like that.”
Tracy also recalls a recent conversation with someone whose breast cancer had metastasized. “She started crying when I told her my story. I’ve been Stage 4 for 18 years. People think it’s a death sentence, but it isn’t necessarily a death sentence. You have to have hope.”
“And I struggle with saying ‘you have to have hope,’ because there were times when I didn’t have hope. I mean that you have to reach out to people. You have to find people in your life that give you hope—and gravitate to them.”
Just like other breast cancer types and stages, experience and overall prognosis with metastatic breast cancer (MBC) are unique to each individual. To learn more about Stage 4 breast cancer, click here.
National Breast Cancer Foundation is here for you and your loved ones. Whether you need support, education, or help during treatment, we have a team dedicated to getting you the help you deserve.