Myths and Misconceptions About Metastatic Breast Cancer

Some people tend to think that breast cancer is breast cancer, regardless of stage at diagnosis. In the media, breast cancer is often portrayed as a relatively good type of cancer that can be overcome with the right combination of treatments.

But as our Community at Breastcancer.org in our stage IV discussion forum tell us again and again, stage IV, or metastatic, breast cancer — cancer that has spread beyond the breast into other parts of the body, such as the bones, liver, or brain — is very different from early-stage breast cancer. They often need to educate family, friends, neighbors, and coworkers about this reality. What follows are nine of the most common myths and misconceptions about metastatic breast cancer.

Whether metastatic breast cancer (MBC) is someone’s first diagnosis or a recurrence after treatment for earlier-stage breast cancer, it can’t be cured. However, treatments can keep it under control, often for months 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 it stops working, a patient can switch to another option. There may be periods of time when the cancer is well-controlled and a person can take a break. But people with MBC need to be in treatment for the rest of their lives.

As member of our Community at Breastcancer.org Vlnprh of Wisconsin comments: “The vast majority of people have no idea what MBC treatment involves. They somehow think that you will undergo something similar to early-stage patients — surgery, radiation, chemo, whatever — and then be done. They want to see you as a pink-tutu-wearing cheerleader jumping up and down declaring that you have beaten this disease…”

Amarantha of France 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. But there is a big difference between stage IV incurable cancer, which MBC is, and terminal cancer, which can no longer be treated. A person isn’t automatically terminal when she or he gets a metastatic diagnosis. Although MBC almost certainly will shorten someone’s life, it often can be managed for years at a time.

As Illimae of Houston points out: “Stage IV is not an immediate death sentence. It feels that way at first but many have months/years of reasonably decent condition. 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 when here I am 4 and half years later.”

“You don’t look sick.” “You look so well.” “Why do you still have your hair?” “Are you sure you have cancer?” These are comments that people with MBC report hearing. But there are many treatment options besides chemotherapy, 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: “‘If she looks good, she is good.’ Nope. Many of us suffer from the invisible disability of fatigue. I would venture to say every available treatment causes us some level of fatigue. We struggle to keep up. It may look like we are doing the bare minimum when we are really giving it our all.”

JoE777 of Texas adds: “The new normals advertised about therapies on TV are deceiving about the side effects. They talk about side effects while women are skipping through life. [I’m] not looking to show the harsh side effects but [I don’t want my family to] think there is something wrong with me that my life is not like that.”

Related to myth #3 is the notion 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 Breastcancer.org professional advisory board member Sameer Gupta, MD, a medical oncologist at Bryn Mawr Hospital in Bryn Mawr, Pa., and a clinical assistant professor of medicine at Jefferson Medical College in Philadelphia. “The goal is control rather than cure. Think of it as a marathon vs. a 50-yard dash.”

Doctors treat earlier-stage breast cancer more aggressively because the goal is to cure it: destroy all of the cancer cells and leave none behind, reducing the risk of recurrence as much as possible. With MBC, the goal is control so that patients can live well for as long as possible. And chemotherapy isn’t necessarily the mainstay of treatment.

DivineMrsM of Ohio shares her experience: “[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. Or that I was making up that I had advanced breast cancer, perhaps as a sympathy ploy or for attention. She even asked, ‘Aren’t you on chemo?’ And I worked with this woman for a number of years, she was not a stranger!”

When some people hear stage IV breast cancer, they assume something must have been missed along the way to let the cancer get that far. 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 control risk factors such as not exercising enough, watching their weight, or eating healthy. But a person can do everything right and still get MBC. Although regular screenings increase the odds of diagnosing breast cancer at an earlier stage, they can’t guarantee it.

Another major misconception: 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 between 20% and 30% of people with an earlier-stage breast cancer will eventually go on to develop MBC — and there’s often no good explanation as to why. And it can happen to anyone. 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.”

Shetland Pony adds: “‘If she has MBC, she must have done something wrong — like not get a mammogram, not follow her treatment, not live a healthy lifestyle.’ Sorry to pop your bubble of security, but people can do everything right and still get MBC. Yup, that means you are vulnerable too.”

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 that will guide treatment choices. They can test positive or negative for hormone receptors and/or an abnormal HER2 gene — the gene that causes the cells to make too many copies of HER2 proteins that can fuel cancer growth. These test results guide treatment choices.

For triple-negative stage IV cancers — meaning they test negative for hormone receptors and an abnormal HER2 gene — testing for PD-L1 is becoming more common. PD-L1 is a checkpoint protein found on the surface of healthy cells that prevents the body’s immune system T-cells from attacking them. Some breast cancer cells also have large amounts of PD-L1 on their surfaces, which helps shield them from the body’s immune response. Newer immunotherapies are being used to treat PD-L1-positive MBC.

Furthermore, treatment choices can depend on a person’s age, overall health, and whether there are other medical conditions present.

The bottom line? Treatments vary. DivineMrsM of Ohio 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.”

Not true. Breast cancer is still breast cancer, wherever it travels in the body. However, the characteristics of the cells can change over time. For example, a breast cancer that tested negative for hormone receptors or an abnormal HER2 gene might test positive when it moves to another part of the body, or vice versa (positive can become negative). “Keep in mind that the cancer cells are trying to survive in the body, so they can change,” says Dr. Gupta. “We always emphasize rechecking the biology.”

Ninety percent of MBC diagnoses occur in people who have already been treated for an earlier-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 original tumor size and the number of lymph nodes involved can help predict the risk of recurrence.

For example, a 2017 survey of 88 studies involving nearly 63,000 women diagnosed with early-stage, hormone-receptor-positive breast cancer found that the risk of distant recurrence within 20 years ranged from 13% to 41%, depending on tumor size and lymph node involvement.

As KatyK of Idaho comments: “[There is a misconception] that you are ‘cured’ if you are cancer-free five years after initial diagnosis. 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.” These might comfort people with early-stage breast cancer, who can look forward to one day finishing treatment and moving on — but people with MBC don’t have that luxury. They know they will be in treatment for the rest of their lives. They also know that their life is likely to be shorter than they’d planned.

Mentally and emotionally, people with MBC have a completely different experience. “For them, the whole ringing the bell idea [to celebrate the end of treatment] does not work,” says Dr. Gupta. “I have patients who are coming in once a week and have to plan their lives around their treatment. The whole pink brigade idea is very upsetting to them.”

Fortunately, more and more people with MBC are speaking up and calling attention to how their experience differs from that of people with earlier-stage breast cancer. People with MBC live with cancer always in the background of their lives, but with new and emerging therapies, many are living longer and maintaining their quality of life.

As DivineMrsM of Ohio says, “While the advertisements for drugs like Ibrance and Verzenio are too glossy and perfect to show the true realities of dealing with MBC, in a way, they may help educate people that newer forms of treatment for breast cancer are now available, and if that treatment is effective, those with MBC can lead a somewhat normal life, participating in regular activities.”

Clearly, the experience of metastatic breast cancer is quite different from early-stage breast cancer. But there are so many patients who understand just what you’re going through. Read more about Living with Metastatic Breast Cancer and join our discussion forum for people with stage IV/metastatic disease.