Forty years ago, there were only 3 million cancer survivors in the U.S. Thanks to improved treatments, now there are nearly 12 million.
This new population of survivors has a complex set of health needs to juggle as it grows and ages, including effects of chemotherapy and radiation that can appear years or decades after treatment.
The start of a decades-long battle
Ann Marie Wiesen's battle with cancer started in an unexpected way in the fall of 1976, when she was 15 years old.
"I would wake up in the middle of the night and be extremely itchy, my feet would itch like crazy," she said. "Who would think that was symptom of something?"
On Thanksgiving Day of that year, Wiesen woke up with a lump on her neck and rushed to a doctor. She was soon diagnosed with Hodgkin's lymphoma, a cancer of the lymphatic system. She had two surgeries, extensive radiation and chemotherapy, and she went into remission.
Wiesen, who now owns the AAAA Bike Shop in Ventnor City, N.J., with her husband, Mike, has since accumulated an entire closet full of medical records.
In her 20s, she was diagnosed with thyroid cancer. Then a bladder disorder and a heart murmur. At age 31, she went into ovarian failure and early menopause.
"Then I got diagnosed with aortic valve stenosis, which is the narrowing or blocking of the aortic valve," Wiesen said.
At age 41, she was diagnosed with breast cancer and underwent a double mastectomy and reconstructive surgery. Since then, she has had skin cancer and had to get a pacemaker put in for another heart problem.
Wiesen said she feels like a cat with nine lives, but recognizes she has had some bad luck.
"I always say when I was born I probably got in the wrong line at the baby department," Wiesen said.
With time, an increased focus on late effects
Risk for certain heart problems is higher after radiation, as is the risk for second cancers and infertility. Doctors call the side effects of cancer treatments that come years afterward late effects. Wiesen said she did not hear anything about them when she was diagnosed. Her mother, who was making all of the medical decisions for her teenage daughter, said she did not either.
"Doctors weren't as aware as they are today, and when the cure rate was really low, they were happy for immediate survival and didn't care about long-term survival," said Dr. Joe Carver, chief of staff at the University of Pennsylvania's Abramson Cancer Center.
As cancer treatments have grown more successful, sophisticated and targeted, oncologists say they have the luxury of working to preserve the quality of the life saved. In many cancer programs, late effects are part of the conversation from day one, but it wasn't always like that.
Carver treats patients with heart problems decades after they have been treated for cancer. He said most people who got cancer-fighting drugs 30 years ago cannot name those drugs, let alone the risk of side effects that go along with them.
"Most people know sort of what cancer they had, but if you ask what drugs they got for chemotherapy, most people have no idea," Carver said. "So it begins a process of being a giant detective to try to find what they had."
Carver said many primary care physicians lack expertise in the late effects of cancer treatments, so it is up to patients to advocate for themselves. His advice for patients who finish their treatment is to get a list of exactly what type of cancer they had and how it was treated.
"Then to develop a long-term care plan that says, we know that if you got 'X,' then down the line you might develop this organ problem," Carver said.
Survivorship programs coordinate care
Penn is one of eight cancer centers nationwide in a survivorship program with Lance Armstrong's Livestrong foundation. Staff there send letters outlining treatment and risk factors to primary care physicians, as well as patients.
At the Children's Hospital of Philadelphia, the survivorship program calculates each child's exposure to chemotherapy and radiation and gives their families screening guidelines.
CHOP's Dr. Jill Ginsberg, director of the cancer survivorship program, gives an example. When patients are exposed to anthracyclines, a type of chemo that can cause heart problems, they will calculate how much they received over the course of their treatment, then develop screening guidelines for cardiac late effects.
"That might involve yearly or every few year studies including an echocardiogram or an EKG," Ginsberg said.
According to Ginsberg, children's hospitals were the first to have these survivorship programs; over the past decade or so adult programs have followed suit. Still, survivorship care is a field in its infancy, and is voluntary for patients.
Ann Marie Wiesen never received a care plan, nor did she enroll in a survivorship program. She said she does not want to talk about her health any more than necessary. Her secret weapon in juggling her complicated routine of follow-up care? A nice big daily planner to keep track of her slew of medical appointments.
"You have to follow-up with labs, you have to follow up with the doctors, you have testing constantly, " Wiesen said.
And good insurance.
"My body's probably worth well over a million dollars, if not way more," she said.
Wiesen said now, her biggest health regret is not being able to have more children. After years of infertility, reproductive reconstructive surgery and hormone treatments, she finally got pregnant with her daughter, Jordan, three months after she and her infertility doctor had thrown in the towel.
Jordan is now 15, the same age as her mother when she was diagnosed with cancer. Her mother calls her the "miracle child."