Medical advances are making it possible to live a normal life without being cured of cancer.
When she was diagnosed with stage IIIB breast cancer in 2006, 29-year-old Pam Cromwell was told she had just six months to live. More than 10 years later, she’s getting ready to celebrate her 40th birthday.
“Receiving a death sentence was a super smack in the face. I felt like my doctor had given up on me,” recalls Cromwell. She sought a second opinion at the urging of her best friend, who helped her find a new physician. “My new doctor told me, ‘You’re not going to die; we’re going to fight this.’”
Her fight began with a mastectomy on her left breast. It was the first step in a long journey that subsequently included a mastectomy on her other breast and, when the cancer eventually spread to her bones, several blood transfusions and ongoing chemotherapy at Cancer Treatment Centers of America® (CTCA) in Philadelphia, Pennsylvania, where Cromwell has been undergoing regular treatment since 2009.
The fact that Cromwell has survived a decade longer than expected is remarkable. Not because she beat her cancer, but because she didn’t.
“I’m not cured; I still have cancer,” says Cromwell, who lives in Phillipsburg, New Jersey. “About two years into my treatment at CTCA®, I looked at my doctor and said, ‘OK, are we done with all of this yet?’ Because in my mind I wanted to get on with regular life—planning vacations and things like that. She was very straight with me, though. She said, ‘Pam, at this point we’re treating you for quality of life.’”
Cromwell didn’t understand at first. Then it hit her. “It was one of those moments where it took me a long time to catch my breath. I never knew cancer could be a long-term thing. I always thought I’d go into remission,” she continues. “Suddenly, I had to accept the fact that this wasn’t going away.”
Like Cromwell, more and more people with cancer are evolving from a state of treating their disease to a state of managing it, knowing that advances in oncology may allow them to live many years with their illness—even if they can never eradicate it.
Soaring Survival Rates
There are 23 percent fewer deaths from cancer today than there were 25 years ago, according to the American Cancer Society,1 whose 2016 report on cancer incidence, mortality and survival says the cancer death rate fell from a peak of 215.1 per 100,000 in 1991 to 166.4 per 100,000 in 2012, the most recent year for which there are data. That may mean that more than 1.7 million cancer deaths were averted through 2012, according to the American Cancer Society, which attributes the saved lives to steady reductions in smoking combined with advances in cancer prevention, early detection and treatment.
“Thanks to improved treatment such as immunotherapies and targeted therapies, people are living with advanced cancer for a whole lot longer than they used to,” says Dr. Jeanette Boohene, a palliative medicine physician at CTCA at Western Regional Medical Center in Goodyear, Arizona. “As a result, for a lot of people, having cancer is more about living with a chronic condition while still remaining hopeful for curative treatments.”
“Lung cancer is a really good example. It is one of the most common causes of cancer mortality worldwide, but there has been a lot of progress and improvement in treatment so that folks are living with this diagnosis for a lot longer than they used to,” explains Dr. Boohene, who says cancer increasingly resembles other chronic conditions, like diabetes, multiple sclerosis or HIV. “HIV is a good analogy. Twenty years ago, a diagnosis of HIV was a death sentence. Today, advances in therapy make it possible to live a relatively normal life with HIV.”
Focus: Quality of Life
Although it’s good news for patients, increased survivorship translates into increased responsibility for physicians, according to Dr. Robert Taylor, a palliative medicine physician at The Ohio State University Comprehensive Cancer Center in Columbus, Ohio. “Progression-free survival”—the period of time that a patient lives with cancer without the condition worsening—poses a moral challenge as much as it does a medical one, he says.
“People are now living with cancer for many years—even decades. That creates a real challenge, because they often have chronic unresolved pain and other symptoms that make them feel miserable and question whether surviving was worthwhile,” says Dr. Taylor, recalling an old Chinese proverb: If you save a life, you are responsible for that life. “As doctors, we have to take responsibility for our success in prolonging survival from these dreadful diseases by helping people have a quality of life where they feel thankful they’ve survived.”
Although treatment—including chemotherapy—typically continues indefinitely to keep the disease from progressing, the focus on quality of life as opposed to disease resolution is what separates physicians’ approach to “chronic” versus “curable” cancer.
“If you have advanced-stage cancer, it’s very unlikely that we can cure it, but we probably can calm the disease down enough so you can live with it,” explains Dr. Boohene, who says pain, nausea, fatigue, cognitive impairment and a weakened immune system are common symptoms reported by people living with chronic cancer. “There’s a difference between living with cancer and existing with cancer. Without treatment to improve their quality of life, many patients would remain in a weakened condition because of their disease, so our focus is on managing their symptoms with medication, nutritional supplements and other integrative therapies.”
While medications and supplements can often keep physical symptoms under control, mental and emotional health also are important, according to Dr. Taylor. “People are always waiting for the other shoe to drop, so there’s often a lot of anxiety, worry and depression,” he says. “Marriages are strained and sometimes broken. Relationships with family members can be challenged because people don’t always appreciate or understand the patient’s struggles. Parents are preoccupied by the thought of not being there to raise their children into adulthood or not being around to see their grandchildren. It’s a lot to cope with.”
Psychologists, social workers and—for the spiritually inclined—chaplains are important members of the chronic cancer patient’s care team.
“You’re not the same person you were before you had cancer, physically or psychologically. This is your ‘new normal,’ and you have to learn how to adapt to that,” continues Dr. Taylor, who says pharmacological and non-pharmacological therapies alike can be helpful.
“We may prescribe anti-depressants or anti-anxiety medication. A lot of people get caught up in negative thinking patterns that reinforce their struggles instead of helping them cope. For those people, cognitive behavioral therapy can be really helpful in terms of enabling patients to reframe and refocus their thinking in a way that is more constructive and positive.”
‘Pam, the Business Analyst’
There’s no right way to react to the news that you may never be cancer-free. For Cromwell, the key to coping has been staying busy and living as normal a life as she can. She stays active, for instance, with regular kickboxing classes; continues to travel and take vacations; and goes out with friends often. In her spare time, she runs her own charity, Pink for Pam, which raises money to fund stress relief for cancer patients in the form of three-night hotel stays, spa treatments, gym memberships and nice dinners—anything that helps patients blow off steam and recharge empty batteries. A self-described workaholic, she has continued working full-time as a business analyst throughout her various treatments and therapies, using her laptop in the waiting room on the days she receives chemotherapy.
“When you’re diagnosed with cancer, people assume you should spend all your time resting. But that’s not for everyone,” Cromwell says. “I think staying busy and continuing to be myself is what has saved me mentally.”
It hasn’t been easy, she acknowledges. Living with cancer has made it hard to date, for instance, and has closed the door to her having children in the traditional way, both of which have fueled occasional depression. But continuing to be who she has always been—and finding new ways to live her life to the fullest—has made the last decade living with cancer as much about the living part as it has been about the cancer part.
“I have never allowed myself to become a cancer patient. People know me as ‘Pam, the business analyst,’ not ‘Pam, the girl who has cancer,” Cromwell concludes. “I’m not in remission, but so what? At the end of the day I’m not going to let cancer stop me from living my life now.”
Secret to Success: What You Can Do
A number of medical advances are affording people with advanced-stage cancer longer, better lives, according to Dr. Boohene.
“Targeted therapies, for example, have made it possible for some people to live longer with cancer; that’s where cancer treatment is headed,” she says. She cites advances in areas such as genomic testing, which enables physicians to individualize medications and therapies to specific cancer cells; immunotherapy, which is typically less toxic than traditional chemotherapy; and oral chemotherapy, which can be administered at home, making chemotherapy schedules easier for patients to follow.
While these advances have increased survivorship, one of the most powerful things patients with chronic cancer can do to increase longevity is also one of the simplest: Make healthy choices.
“What we as physicians can do is treat your cancer and associated symptoms as aggressively as possible. What you as a patient can do is adopt a healthy lifestyle,” Dr. Boohene says. “Stop smoking. Exercise. Pay attention to nutrition. Maintain a healthy body weight. These are things we should all be doing anyway, but when you’re living with chronic cancer, it’s one way you can feel empowered to help yourself live the best possible life.”
No case is typical. You should not expect to experience these results.