9 Myths About Metastatic Breast Cancer

Breast cancer is not just one disease, and not all breast cancers are created equal. Some breast cancers spread to other parts of the body — called metastatic breast cancer (stage IV). And, some don’t spread. People living with metastatic breast cancer (MBC) often need to educate family, friends, neighbors, and coworkers about this reality. 

Here are some of the myths about MBC often heard by Breastcancer.org Community members — and what the real story is.

Whether metastatic breast cancer is someone’s first diagnosis or a recurrence after treatment for early-stage breast cancer, there’s no way to completely rid their body of cancer. However, it’s possible for treatments to keep the disease under control for years at a time. People with MBC report fielding questions from family and friends such as, “When will you finish your treatments?” or “Won’t you be glad when you’re done with all of this?” The reality is they will be in treatment for the rest of their lives.

A typical pattern is to take a treatment regimen as long as it keeps the cancer under control and the side effects are tolerable. If one treatment stops working, there’s almost always a different one to try. There may be periods of time when the cancer is well controlled and a person can take a break from treatment. 

Community member Amarantha writes: “The one I get over and over is, ‘How long will you be on this chemo? I mean doesn’t it end sometime?’ Yes, it ends when it stops working and then we go on to another treatment — lather, rinse, repeat, I guess, until we run out of options.”

While some people mistakenly think MBC is curable, at the other extreme are those who assume it’s an immediate death sentence. Although MBC will almost certainly shorten someone’s life, people with MBC can still live long and productive lives. 

As Illimae points out: “Stage IV is not an immediate death sentence. … Brain mets are not necessarily the end, either. When found early and treated, especially with minimal disease in the body, life can resume to a fairly normal state.”

Mermaid007 adds: “[W]hen I was diagnosed with bone mets … I felt I needed to go home and get my affairs in order. … Here I am four and a half years later.”

“You don’t look sick.” “Why do you still have your hair?” “Are you sure you have cancer?” These are questions that people with MBC report hearing. But there are many treatment options that don’t result in hair loss, and people often appear well while taking them.

As NancyHB comments: “I’d much rather be a poster child for how sometimes we can live with, rather than die from, MBC — at least for a while. Instead, I find myself defending against people who are increasingly becoming impatient with my lack of cancer-patient appearance. I’m grateful for this time of feeling good, and they’re harshing my buzz.”

Some people with MBC report that they actually look better than they feel while in treatment. So they sometimes have to let family and friends know that even though they appear fine, they don’t feel well.

Shetland Pony notes: “Many of us suffer from the invisible disability of fatigue. … We struggle to keep up.”

Another myth is that because MBC is advanced cancer, doctors have to pull out all the stops to fight it. But that’s actually not the case, says Sameer Gupta, MD, a medical oncologist at Bryn Mawr Hospital and member of the Breastcancer.org Professional Advisory Board. 

Doctors treat early-stage breast cancer (stage I-IIIB) more aggressively because the goal is to remove all cancer from the body. They want to destroy all of the cancer cells and leave none behind, reducing the risk of recurrence as much as possible. With MBC, Gupta says, the goal is to control cancer so that people can live well for as long as possible. “Think of it as a marathon vs. a 50-yard dash.” 

DivineMrsM says: “[P]eople in general think we should be hooked up to a chemo IV and looking sickly. When I told one woman I took a daily anti-estrogen pill to combat MBC, she looked at me with pity and sadness … like I had no clue what I was talking about.”

When some people hear stage IV breast cancer, they assume something must have been missed along the way to let the cancer spread beyond the breast. There is a misconception that breast cancer always develops in orderly steps from stages I to II, III, and then IV — and that there’s plenty of time to catch it early. People with MBC can face misguided assumptions that they must have skipped mammograms or self-exams, or they didn’t do enough to reduce their risk of breast cancer by exercising and eating healthy. But a person can do everything right and still be diagnosed with MBC. Although regular screenings increase the odds of diagnosing breast cancer at an earlier stage, they can’t guarantee it.

Another common misunderstanding: If you’re diagnosed with metastatic cancer after being treated for an early-stage breast cancer, you must have chosen the wrong treatment regimen or it wasn’t aggressive enough. But around 30% of people with an early-stage breast cancer will eventually go on to develop MBC — and there’s often no good explanation as to why. Treatments can reduce the risk of recurrence, but they can’t eliminate it.

As Illimae of Houston notes: “[People think] that a stage IV diagnosis equals negligence on the part of the patient. In my case, it had spread before I ever felt a lump. I felt it Saturday and saw my doc on Monday. I ignored nothing, sometimes it just happens that fast.”

The label metastatic contributes to the myth that it is one kind of breast cancer. But like earlier-stage breast cancers, stage IV cancers can have different characteristics. For example, metastatic breast cancers can be ductal or lobular; they can also test positive or negative for hormone receptors and abnormal levels of HER2 genes. These characteristics, as well as a person’s age and overall health, help to guide treatment plans.

DivineMrsM says it well: “There is the misconception … that there is one standardized treatment for every case of MBC, like a one size fits all. But there are different approaches and it can’t always be said that one approach is better than another. Most people don’t realize [there are] different subcategories of this disease.”

Breast cancer is still breast cancer, regardless of where it travels in the body. However, the characteristics of the cells can change over time. For example, research has found that breast cancer that’s HER2-positive can sometimes come back as HER2-negative breast cancer or vice versa (negative can become positive). “Keep in mind that the cancer cells are trying to survive in the body, so they can change,” Gupta says.

Most MBC diagnoses occur in people who have already been treated for an early-stage breast cancer. Many people are under the impression that remaining cancer-free for five years means that a metastatic recurrence can’t happen. However, distant recurrences can occur several years or even decades after initial diagnosis. Factors such as the stage, tumor size, hormone and HER2 receptor status, and the number of lymph nodes involved can help predict the risk of recurrence.

For example, a 2017 survey involving nearly 63,000 women diagnosed with early-stage, hormone receptor-positive breast cancer who took hormonal therapy for five years found that the risk of distant recurrence within 20 years ranged from 13% to 41%, depending on tumor size and lymph node involvement.

People often think “you are ‘cured’ if you are cancer-free five years after initial diagnosis,” KatyK says. “I fell for that one myself. When I was diagnosed with MBC 12 years after [my] initial diagnosis, I was shocked. I thought I was cured, which to me means all better. Nope! Not even sure medically what ‘cured’ means.”

People with MBC report hearing comments such as, “At least you have a good type of cancer,” “Aren’t you glad so much research on breast cancer has been done?,” “Fortunately you have so many options.” But people with MBC will be in treatment for the rest of their lives, so breast cancer is never really over for them. 

Mentally and emotionally, people with MBC have a completely different experience than people with early-stage breast cancer. “For them, the whole ringing the bell idea [to celebrate the end of treatment] does not work,” says Gupta.

Fortunately, more and more people with MBC are speaking up and calling attention to how their experience differs from that of people with early-stage breast cancer. While it may be scary figuring out how to live with metastatic breast cancer, many people understand what you’re going through and have been where you are. If you’re living with an MBC diagnosis, it may be helpful to connect with others who understand stage IV/metastatic breast cancer through Breastcancer.org online discussion groups and virtual support groups.