Living on the Edge: Some Patients with Metastatic Cancer Live Long and Well

A growing population of patients have emerged: long-term metastatic cancer survivors.

Talk about this article with other patients, caregivers, and advocates in the Prostate CURE discussion group.
Suzanne Lindley has become so busy that her husband, Ronnie, added a tracking device to her cell phone so he could keep up with her—not the life you’d expect from someone living with metastatic colon cancer. Just recently Lindley was in Florida for the Daytona 500, then on to Washington, D.C., to testify before a health subcommittee exploring radiation therapy. The next week she was back in Texas, loading horses for a rodeo, where her 19-year-old daughter Karlie was performing, before heading out for a spring vacation with Ronnie, Karlie, and 22-year-old daughter Katie.

“I am one lucky girl,” Lindley says. Lucky, yes, but also determined and dedicated. Diagnosed in 1998 with colon cancer that had metastasized to her liver, Lindley, then 31, was told that the only drug available didn’t offer much hope; she had six months to live. 

Around 20 percent of cancer patients diagnosed annually in the U.S. have distant or advanced disease, meaning that their cancer has spread, or “metastasized,” to a different site from the original tumor. Some patients are diagnosed with metastatic cancer; others are treated for a local cancer that comes back, or recurs, at a distant site. A number of factors, including where the cancer metastasizes, available treatment, an individual tumor’s biological makeup, and how the patient responds to treatment determine how long the patient survives and his or her quality of life.

Lindley is an example of the growing number of “chronic” metastatic patients, a relatively new group who are alive because they were diagnosed on the crest of emerging targeted therapies, drug combinations, surgical options, and radiation treatments to which their tumors responded. 

These patients have benefited from being able to “hitchhike,” meaning when one treatment stops working, they can move to the next. Advances in supportive care have also helped minimize side effects, so patients are given hope, time, and a quality of life that eases living while still living on the edge, waiting for the next new treatment to come along. 

Penny Damaskos, LCSW, coordinator and clinical supervisor in the department of social work at Memorial Sloan-Kettering Cancer Center in New York City, oversees support groups for metastatic patients. 

“The composition has changed from mostly breast cancer and prostate,” she says. “Now we have lung, colon, and hematologic patients who are living with chronic cancer.” 

Damaskos says these patients go through treatment, are stable for a while, and then start treatment again. “It’s not farfetched and fantasy to live with the hope that there will be another new treatment that may not cure them but will give them more time with less symptoms,” she says.

Lindley says she and Ronnie were too young to know what to do with the information the oncologist gave them in 1998. They went home, circled a date six months in the future when they anticipated she would be dead, and talked about how to spend those last six months. They decided to move to the country, where Suzanne could have horses and a way of life she had always wanted. Ronnie, an electrical engineer, agreed to make the longer commute as his wife began making memories for their daughters, who were 8 and 11 at the time. While searching the Internet, Lindley found a cancer message board and posted a message about her diagnosis. 

“People were writing about how sorry they were that I had a terrible diagnosis,” she recalls. “Then one man, Shelly Weiler, wrote back and said, ‘I am in my 50s and I have stage 4 colon cancer and I have a daughter your age, and I would not let her give up without hope. You need to find a doctor and get treatment.’ ” The note galvanized Lindley to begin treatment. Coincidentally, Weiler’s daughter is Judi Sohn, who later cofounded C3: Colorectal Cancer Coalition to honor her father. 

For the next five years, Lindley hitchhiked multiple drugs, drug combinations, and clinical trials. That ended in 2004 when, during yet another clinical trial, liver tumors grew and scans revealed new metastases in her spine and lungs.

Damaskos says Lindley’s journey reflects the difference between chronic patients and those who move on to the “new normal” after finishing treatment. Metastatic patients repeat the assessment and adjustment process every time they begin a new treatment, the cancer progresses, or it involves another location.  

“It’s negotiating that in-between space of their lives and looking at what is on the horizon as they learn how to manage the uncertainty,” she says. Each time they experience a change, they have to refocus on living.

Shortly after Lindley learned treatments had stopped working in 2004, she went to her first colon cancer conference. She met the patients she had been talking with online; she also thought she would find someone who would have yet another answer for her next treatment option. “I showed my scans to a surgeon who was there, and he said, ‘There isn’t anything to do. You are dying.’ I went home totally sunk.”

Talk about this article with other patients, caregivers, and advocates in the Prostate CURE discussion group.
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