It's a sad reality that telling people you have stage 4 breast cancer changes how they view you. That was actor Shannen Doherty’s experience when—in early 2019—her breast cancer returned after being cancer-free for two years. “They look at you like you’re a dead man walking… and that they need to say their goodbyes to you,” Shannen said during an interview with ABC’s Nightline in February 2020, when she publicly revealed the diagnosis she’d been living with for a year.
Shannen has detailed with painful honesty what having cancer means, but her focus has been on challenging the perceptions that stage 4 breast cancer is an imminent death sentence. Through Shannen's work and the hard work of countless others, perceptions are changing—women are showing the world it's possible to live a full and joyful life with a stage 4 diagnosis. We spoke with experts about the realities of stage 4 breast cancer and how to come to terms with the news—as well as the women who are living with it, challenging perceptions around the illness and embracing the time they have left.
Stage 4 breast cancer survival rate
Stage 4 breast cancer, also known as metastatic or secondary breast cancer, is when cancer cells that originated in the breast tissue have spread beyond the breast and nearby lymph nodes to other parts of the body, most commonly the bones, liver, lungs, and brain. While many women may look out for the early signs of breast cancer and check for breast cancer at home, for many women this diagnosis can present itself with little warning. According to the American Cancer Society, 28% of people whose breast cancer has spread when they are first diagnosed are still alive five years later. It’s a similar outlook in England according to Cancer Research statistics (25%) but there are no UK-wide survival statistics for different cancer stages.
Bluntly put, it’s terminal—a word loaded with implications that belie the reality of the disease for many people. And, if you've just been told you have stage 4 breast cancer, those numbers might come as a devastating blow. But five years, though not long in the context of life expectancy, is just a commonly used timepoint to measure survival. It doesn’t mean you’ll only live for five years after diagnosis.
Prognoses vary, with some people deteriorating quickly while others survive for decades, and there is no sure-fire way of predicting at diagnosis who will fall into which camp, explains Catherine Priestley, clinical nurse specialist at Breast Cancer Now. “In people who respond really well to treatment, you might not see anything at all on their scans when they go for check-ups. Those people will probably be around many years after they’re diagnosed,” Priestley says.
Is stage 4 breast cancer treatable?
Lori Ranallo, a board-certified oncology nurse practitioner at the University of Kansas Cancer Center, explains although incurable, stage 4 breast cancer is treatable. “With emerging science and drug development, those with terminal cancer may live a long life free of progression and periods of time where they feel ‘normal’,” she says. For some people, it can be like living with a chronic condition—taking daily medication, and attending regular medical appointments.
The statistics don’t account for your age, general health and fitness, how fast-growing your tumor is (its grade), and whether your disease is affected by hormones and proteins that can make some cancer cells grow and spread faster. “Most patients will start their treatment for stage 4 breast cancer and when that stops working, they will go on to another line of treatment,” Priestley adds. “It's incredibly complex but also incredibly individual.”
Perceptions of stage four breast cancer are changing
Doherty’s latest movie—List of a Lifetime—had its US premiere on the Lifetime channel earlier this month. The feature film tells the story of a woman whose breast cancer diagnosis prompts her to find the adult daughter she’d given up for adoption as an infant, with Doherty poignantly cast as the adoptive mother.
The film’s release was timed to mark Breast Cancer Awareness Month. But it held even greater significance for the star in showing people with stage 4 breast cancer can still go out and work. “It doesn’t mean that you’re not viable in the workplace,” she told Variety. Shannen, now 50, has made three films in 2021 alone, such is her drive to portray the positives of survivorship.
That sentiment is shared by many others. At 71, Maryjo Borrelli from Pennsylvania has lived with stage 4 breast cancer since 2017, after her primary breast cancer diagnosis 21 years ago. “In the first year, I did a lot of tidying up—writing wills, advanced directives, making sure my financial documents were settled,” she recalls, “but then I decided I wanted to spend less time on the householder-type chores and live.”
So, she sold her house, downsized, and has spent time traveling, only retiring from her job as a disaster worker for the US federal government in February 2020. “I’ve kept busy, and I’m very active in the metastatic support community,” Maryjo says.
Living day-to-day with her diagnosis means that other than daily drug therapy and monthly check-ups, for the most part, life has been pretty much business as usual. “Sometimes I forget I have cancer—I’ve worked hard to use mindfulness, and through that, I’ve learned to stop and enjoy the moment.”
For Jules Gallagher, whose disease had already spread to her spine and pelvis when she was first diagnosed in 2013, changing perceptions of what stage 4 breast cancer looks like has seen her push her physical boundaries.
“After my initial treatment, when I started to feel well again, I signed up to cycle London to Paris with a friend and we raised £8k for charity,” says Jules, who’s 47. She followed the epic four-day 440km challenge a year later with a 193km bike ride to Amsterdam, this time collecting £4k for the local hospital where she had her treatment. “I’d done a few cycling events and run a marathon before [my diagnosis], but London to Paris was the biggest thing I’d done. I felt really well the whole time,” she adds. “That's the thing about cancer, it doesn't make you feel ill—it’s the treatment that does. But I very rarely feel unwell.”
When she’s not setting herself activity-related goals, Jules works part-time and meets weekly with a cycling group around the coastal town in southeast England where she lives. “Being outdoors and keeping active is like therapy. It’s definitely improved my mental health, and I believe the fitter I am, the better I will be at fighting cancer."
Coming to terms with a stage 4 breast cancer diagnosis
Learning you have stage 4 breast cancer, whether it’s a progression or your first diagnosis, can create a tsunami of emotions. “They range from shock to paralyzing panic; I’ve seen every possible reaction,” says Ranallo, who adds that a strong support network, alongside a medical team you trust, becomes ever more important as you navigate life.
Many people struggle with their status as lifelong cancer ‘patient’ and all it entails. As each scan or medical appointment approaches, and in the run-up to getting the results, there’s often a feeling of dread of what might be around the corner. In the cancer world, it’s become known as ‘scanxiety’—something Maryjo is more than familiar with. “You've always got that sword of Damocles hanging over your head,” she says. “Being involved in the metastatic community, I could see what happened to my fellow sisters, as I call them, as their disease progressed.”
Even if you’ve been stable on a treatment protocol for several years, there’s always the chance it will stop working. That means starting a new line of treatment with the hope of keeping cancer at bay for a bit longer until, eventually, the options run out.
For now, Maryjo and Jules face uncertainty as they await the outcome of radiotherapy treatment after discovering their cancer had progressed. Both say they feel well. “It’s very much a case of getting on as normal. The positive thing about having cancer is that it makes you re-evaluate what's important,” Jules says.
Of course, everyone’s version of ‘normal’ is different. But a common thread running through so many cancer stories is that life—even one with a terminal illness—is very much for living. “Take the vacation you’ve always wanted to take, write letters to your family or friends and tuck those away,” says Ranallo. “We never want to give up, because there are possibilities for new therapies every day.”
And as the number of available treatment options increases, so do each person’s chances of reaching that five-year milestone—and far beyond. “They say, ‘hope is the thing with feathers’ and there is always hope,” Maryjo says. “I have friends with breast cancer and even four years ago, there were only two lines of treatment [for that type of cancer]. Now there are seven. So, I’ll take that thing with feathers.”
w&h thanks Maryjo Borrelli and Jules Gallagher for sharing their experiences.
Many thanks to Lori Ranallo, a board-certified oncology nurse practitioner at the University of Kansas Cancer Center, and Catherine Priestley, clinical nurse specialist at Breast Cancer Now for their time and expertise.
You can find out more about List of a Lifetime and watch Shannen Doherty's interview on living with stage 4 breast cancer here.
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Allie Anderson is a freelance health journalist and editor with 12 years' experience. She writes for consumers and healthcare professionals and has a particular interest in women's and mental health.
Published in Grazia, Glamour, NetDoctor, and numerous clinical journals, Allie regularly contributes to Patient, Aesthetics, and several trade titles.
She's been editor of three publications, including a pharmacy magazine and a health charity membership magazine.
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