What I Wish People Knew About Metastatic Breast Cancer

The term metastatic breast cancer (MBC, also called stage 4 breast cancer) describes breast cancer that has spread beyond the breast — to the bones, liver, brain, or another organ. Even if the cancer is found in another organ, it’s still referred to as breast cancer and is treated as such.

While metastatic breast cancer is terminal and cannot be cured, because of improved treatments more women are living longer than ever with it. Even so, a lack of information and many misconceptions about this diagnosis persist.

Here are several things you should know about metastatic breast cancer and the women who are living with it.

1. Many women live for decades with metastatic breast cancer.

A stage 4 diagnosis is not an instant death sentence, says Renee Sendelbach, 40, from Austin, Texas, who was diagnosed seven years ago, when she learned that her breast cancer had moved into her lungs, bones, and lymph nodes.

“I’ve had metastatic breast cancer for five years and I’m still kicking,” says Susan Rosen, 53, from Franklin, Massachusetts.

According to a 2017 article in the journal Cancer Epidemiology, Biomarkers & Prevention, 34 percent of women diagnosed with metastatic breast cancer have been living with the disease for five years or longer.

“The goal of treatment is to keep patients on their feet as long as possible so that they can continue to do what they want to do,” says Gretchen Kimmick, MD, associate professor of medicine at the Duke Cancer Institute in Durham, North Carolina.

In recent years, treatment for breast cancer has vastly improved, largely because doctors are able to more accurately target therapy to the type of breast cancer a woman has. “The discovery of the HER2 protein and medicines that block it has revolutionized treatment for women with cancers that overexpress this protein,” Dr. Kimmick says. “This cancer was pretty deadly two decades ago, and now we are starting to debate if we’ve cured it in some women.”

2.  Metastatic breast cancer is terminal.

Metastatic breast cancer can’t be cured and it is terminal. “One thing I didn’t know when I was first diagnosed is that breast cancer can only kill you if you have metastatic breast cancer,” says Rosen, who explains that if your cancer remains in the breast, the tumor can be removed, but metastatic means it has spread outside the breast.

“MBC is almost like a different disease than early-stage breast cancer,” adds Ann Silberman, 60, from Sacramento, California, who was diagnosed in 2009. “We are going to die. Our concerns are much different from those of a person who has a treatment that will be over [one day]. Someone in an earlier stage may worry about losing their hair — which is understandable — but they will return to their normal life at some point.”

People with metastatic breast cancer expect to be on treatment for the rest of their lives. “I don’t think everyone understands that,” Silberman says. “I still get, ‘When will your treatment be over?’ Well, it’s never going to be over.”

3. You may not know I’m sick by looking at me. 

“I may look perfectly healthy, but I’m sick,” says Silberman. “Treatment is hard. I sleep a lot. I still travel, but it’s difficult. I just visited a friend in Utah for four days, and it wore me out for two weeks.”

Just because someone doesn’t look like she has advanced-stage cancer, she can be very sick. “It can be an invisible illness,” says Silberman. “You tell somebody you have cancer, but if you have hair, sometimes they don’t believe you.”

4. Plans have to be flexible. 

“My energy is unpredictable,” says Sendelbach. “I literally never know how I’m going to feel from one day to the next. It’s so hard to make plans because if I say yes to something that’s two weeks away, the day of, I could wake up and feel absolutely horrible.”

When someone with metastatic breast cancer declines an invitation or cancels at the last minute, it’s most likely not because they don’t want to be there. Says Sendelbach, “We physically can’t do it.”

Silberman agrees. “I’ve been going through [treatment] for a long time,” she says, “and I’ve had friends drop away. Because of MBC and my treatments, it’s hard for me to be reliable.”

5. I have to prioritize and try not to sweat the small stuff. 

For Sendelbach, each week begins with a list of her priorities. “Obviously, getting to my doctor’s appointments is very important,” she says. “But if the clothes aren’t folded, is that a dire situation? Absolutely not!”

Sendelbach has learned to make compromises: If her husband and son have to pick up their clean clothes from the couch, she can live with that.

“I have learned,” she says, “to look at every situation and ask if this is going to truly make a difference in my day or my family’s day for better or worse.” If the answer is no, then that task might be left undone.

It wasn’t always this way for Sendelbach, though. When she was first diagnosed with cancer, her son was just a year old and she had been married for only two and a half years. “You know how it is when you first have a baby — if everything isn’t perfect, then [it feels like] the world is falling apart!” she laughs. “Now, to us — we ate, we’re all still alive, the house is acceptable — if we’re good, it’s all okay.”

6. There are good days and bad days.

“There are days when I say to myself, ‘I’ve had enough. I can’t take it anymore,’” says Rosen. “But I want to keep on living. I love my life. Overall, I have a great life except for the cancer.”

Rosen has a few mantras she uses when things get tough. “A lot of the tough times are treatment related,” she says. “I refer to those as bumps in the road, and [say to myself], ‘This too shall pass.’”

7. Clinical trials are a promising treatment option.

For people with advanced stages of cancer, clinical trials can be considered the gold standard of treatment. “I recommend clinical trials highly,” says Rosen. “You get access to medication and treatment that you normally wouldn’t have.”

A clinical trial could even have positive results on your cancer. “We are living in an exciting time for cancer treatment,” says Kimmick. “There are myriad new drugs coming out that will improve the lives of all women with breast cancer, both metastatic and early stage.”

However, it’s important to be realistic about the potential outcome of your trial. Rosen was recently enrolled in a clinical trial in which the medication proved toxic for her. But she has no regrets about participating. “It feels like I’m helping researchers who are working on cures for cancer,” she says. “When I had a bad reaction to the drug, they were able to put my side effects in their study. I feel like I did help, and that makes me happy.”

People interested in joining a clinical trial for treatment should talk to their doctor about options that might be good for them.

8. I may not feel like a “fighter” — there’s no final victory.

The language used to describe cancer and its treatment is often the language of war: fighting cancer, battling cancer, being a warrior. But those words may not resonate with women who have metastatic breast cancer.

Sendelbach recalls using fighting words when she was first diagnosed with stage 1 breast cancer. “I was 30 years old, and I was in fight mode,” she says. “I was like, ‘Hell yeah, I can kick cancer’s ass’ and so on.” When she was diagnosed with stage 4, though, she realized there would be no end in sight, no final victory for her.

“There’s not a finish line,” she says, “so to be in fight mode doesn’t really work. There has to be an end in sight to stay in that place.”

For her, metastatic breast cancer is something she deals with day to day. She describes her journey as a marathon, not a sprint. “If you have to stop sometimes to walk and take water breaks,” she says, “you should. If you try to run as fast as you can all the time, it’s inevitable that you’re going to fail.”

9. Our advice to other women with metastatic breast cancer: Be nice to yourself!

“Give yourself a break!” is the advice that Sendelbach offers. “Stop negative self-talk about what you should have done but didn’t do,” she says. “If you have MBC, you need to be kind and loving to yourself.”

The body has only so much energy to offer per day, and managing metastatic breast cancer requires a lot of it. So it doesn’t make sense to try to compare what you’re able to do with what your cancer-free friends are accomplishing.

“Just getting through the day can be hard,” Sendelbach says. “Getting rid of those ‘not good enough’ feelings can lift a huge weight off you.”