When Susan Thornton was 30, she noticed a flat red rash in a small band around her waist. It was itchy and terribly persistent. No cream or lotion made it go away.
One year and half a dozen dermatologists later, she was diagnosed with mycosis fungoides, a rare form of non-Hodgkin lymphoma that's often mistaken for eczema or psoriasis in its early stages.
Twenty-five years later, Thornton's cancer is still around. It persists mostly as a manageable rash, treated with a topical steroid. At certain points the disease has flared up, requiring more drastic treatments. By 1998, the cancer had progressed to tumors, with scaly, itchy splotches spreading all over her body. It took a series of electron beam radiation treatments to knock it back, she says, "melting the tumors away."
Thornton's cancer has been under control since her last radiation treatment five years ago. Still, it's never completely gone, never cured — instead, it's just something she lives with.
Most days, the Philadelphia native feels great. She participates in triathlons every year and travels the world for work as the CEO of the Cutaneous Lymphoma Foundation. "I don't know why, but I'm one of the lucky ones," she says.
This sounds like a remarkable feel-good story. But it's actually an increasingly common cancer experience. The cancer death rate has dropped by 23 percent since 1991, with some even larger gains in types of cancer that used to be extremely lethal. This means there are more and more patients like Thornton who are neither dying from cancer nor defeating it entirely. Instead, they're learning to live with it.
The way we think about cancer is outdated
Many people have a simple narrative in mind when they think about cancer. Doctors discover a lump and treat it with surgery or radiation. Then one of two outcomes follows: complete remission or death.
But this couldn't be further from the reality of many cancer patients.
Increasingly, researchers are learning that cancer can be many, many things. Under the non-Hodgkin lymphoma umbrella alone, there are 60 different subtypes — and each has a different disease progression.
To match these different diseases, there are now dozens of treatments and surgical interventions that are used in hundreds of combinations depending on the patient, cancer stage, and type.
Most of these treatments do not "cure" the disease — instead, they "control" it, turning it into something akin to a chronic condition, like diabetes.
The conversation around cancer, however, hasn't caught up with this reality. Politicians are constantly promising to push for a cure, as Vice President Joe Biden did recently with his "moonshot" initiative.
But many scientists now think cancer is too complex — it's not just one thing — for there to ever be a single silver bullet. "To imagine that we will find a simple solution to this doesn't do service to the true complexity of the problem," explains Siddhartha Mukherjee, author of the cancer history The Emperor of All Maladies.
If we're not going to cure cancer, we've got to learn to live with the disease. And this means radically changing how we talk and think about cancer.
How we talk about cancer informs how people feel about the disease
When Whitney Archer was 25, she was diagnosed with a malignant brain tumor. "I walked into this expecting I would lose my hair, my life," she says. "But I have been able to keep all that."
A brain tumor sounds terrifying. And it was for Archer, at first. But like lymphoma, there are numerous types of brain cancers. Archer was diagnosed with an astrocytoma: a tumor that grows in the astrocytes, or the supportive tissue, of the brain. Depending on the particular subtype of astrocytoma, the cancer can progress slowly or be very aggressive.
Archer had a surgery to remove the tumor but has had no other therapies since, and no side effects from the condition. "My life is mostly like everyone else's," she says.
The war metaphors people use haven't squared with Archer's cancer experience. "Not everything is a battle or fight," she says. "Sometimes living is all you want."
Instead, she prefers the metaphor of living in two worlds. Every four months, when she goes for an MRI to make sure the cancer hasn't grown or changed in any way, she finds herself back in "Cancerland." In that world, her vision of the future is a little more limited. She confronts her own mortality.
Otherwise, it's just life as she's always known it in Gainesville, Virginia, where she works as a writer and school librarian.
Explaining this to her son wasn't easy at first: "I just told him, 'I have this thing in my head. It’s called a tumor, a growth, but it’s not growing. I'm not sick. Look at me; you can see I'm fine. I still go to work, like you go to school. We do normal things. Yes, it’s cancer, but as far as we know, it’s a kind that’s mostly okay.' With him, everything is so simple."
Her 7-year-old seemed to grasp that concept more readily than a doctor she went to see for heartburn. The doctor wanted to order an endoscopy. "Then she saw my medical history and said that if I have cancer, I had to do the procedure at a hospital," Archer says. She had to explain that the two things were completely unrelated, that she wasn't on treatment and her cancer was under control.
Overall, Archer points out, the language around cancer in general desperately lags behind the current scientific understanding of the disease — and that has implications for cancer patients and their families.
She has to be careful about how she talks about her condition. "Sometimes I don't use the c-word, because it's more shocking," she says. Whenever she mentions her illness to friends for the first time, it means shock, an inevitable interruption in the conversation, and lots of explaining that she's actually okay before they can keep talking about something else.
This is why some cancer patients decide to keep their diseases a secret for as long as they can, says Laurence Klotz, a researcher at Sunnybrook in Toronto who works with prostate cancer patients.
"One of the major challenges is to get patients off the incredible anxiety that goes along with cancer. It's described in medical dictionaries as a lethal, rampaging disease," he says.
For most patients, however, prostate cancer is very slow to progress. Men who are diagnosed with the disease are generally more likely to die from something else. So Klotz always tries to urge his newly diagnosed patients that they should not consider the diagnosis an emergency. The "c-word" can initiate a panicky urgency in them.
He opts for a different vocabulary. "I describe this as a disease that develops with age," he says, "and I use phrases like 'psuedo-cancer,' 'part of the aging process,' 'not a real disease.'"
"There are many organs where this occurs — thyroid, breast, prostate, lung cancers," Klotz continues. "These can develop and sometimes disappear." Using a different language helps patients view these cancers for what they are: an almost inevitable mutation of cells that comes with getting older.
Living with cancer can mean coping with cancer distress
Long after any physical changes that cancer brings are managed, emotional distress can linger, and it often comes in fits and bursts.
One of the cancer counselors I spoke to, Matt Stevenson at the Abramson Cancer Center, has come up with a term to describe what many patients experience every time they go in for a scan or checkup: "scan-xiety."
The psychological effects of cancer are in fact so widespread that the American College of Surgeons recently required all accredited cancer centers to screen for the level of cancer distress in new patients and then offer psychosocial care to match patients' needs.
"Distress can mean anxiety, depression, and anything else that causes stress," explains Shawna Ehlers, a psycho-oncologist at the Mayo Clinic. "The cancer community in general is getting much better at recognizing these psychological impacts."
In part, that's because the psychology of cancer can have direct effects on patients' treatments and health outcomes. Fear of progression or recurrence is the most common psychological impact cancer patients struggle with, and it's associated with both under- and overuse of health care, Ehlers explains.
"Anxiety can cause us to be recurrently checking and calling the doctor and requesting testing and evaluation. But on the flip side, anxiety can be associated with avoidant coping, when people don't want to go to the doctor," she says.
Depression is also associated with medical non-adherence, meaning, for example, a patient may skip a chemotherapy treatment or forget to take her medications.
In patients with chronic cancer, these effects can persist long after the diagnosis, long after families have dealt with the initial cancer shock.
"The thing I wish everybody understood is that cancer can impact everything — depression, anxiety, fatigue," Ehlers says. "And those impacts can be lasting."