A growing population of patients have emerged: long-term metastatic cancer survivors.
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.”
At the conference Lindley also met a CancerCare social worker named Keith Lyons, who talked to her about living fully until she died. Lyons moderated a weekly conference call support group that would become another of Lindley’s lifelines. “One very profound thing that he said to me was, ‘Life doesn’t happen around us; it happens between our own two ears.’ He said I could see cancer as a death sentence or I could celebrate the fact that I was very much alive and experience now.”
Until then, Lindley says, she had been living like she was dying. Lyons motivated her to return home and begin enjoying the “muchness” that surrounded her. Then an online friend called her about a relatively new treatment that used radiation to kill tumors from the inside out by implanting minute spheres of radiation directly into the tumor. She learned she was eligible for the treatment and in January 2005, underwent this procedure, called radioembolization, in which millions of tiny microspheres of radiation are sent into metastatic liver tumors through the bloodstream.
As with other metastatic cancers, new treatment options have made a good quality of life possible for many of the men living with metastatic prostate cancer, which Oliver Sartor, MD, Piltz Endowed Professor of Cancer Research at Tulane University School of Medicine in New Orleans, says number around 50,000.
One of Sartor’s patients, Denny Terry, 73, has lived with metastatic prostate cancer since his diagnosis in 1995 when surgery to remove his prostate showed extensive lymph node involvement, meaning, in Terry’s words, his cancer was “out and about.”
Suzanne Lindley sits at her kitchen table against a backdrop of the names and numbers she wrote on the wall when the family first moved to the country. She hated the wallpaper, she says, and knew they would replace it, but living got in the way of remodeling.
Her quality of life is good despite continuing chemotherapy and the fatigue and neuropathy she chooses to ignore. She keeps family and friends updated with an annual note like the one below, which she sent last fall on the 11th anniversary of her diagnosis.
There is no better balance or perception of life than when dancing on the edge of a cliff. ... With each step there are ups and downs, ins and outs, the unknowns, the spontaneous energies of balance—death and life, good and bad, despair and hope—that are there to embrace. … For those of us who dance on the edge it is important to grasp the promise that lies in the next step as each one brings more options, better treatments, and very soon—a cure.
The procedure reduced Lindley’s liver tumors by 65 percent, allowing her to begin hitchhiking yet again.
But more than just keeping her alive, Lindley says the microspheres changed her perspective to “living with cancer instead of dying from it.” It also transformed Lindley into the ultimate advocate for those with primary or metastatic liver tumors. “Since spheres, I haven’t looked back,” she says today.
By 2005 Lindley had met her original goal: living until her daughters graduated from high school. Her next goal was a master’s degree in social work, which she also accomplished. Then she created YES (www.beatlivertumors.org), a nonprofit for those facing primary or metastatic liver tumors.
Damaskos describes it as living to the next marker. “They move from preparing for the milestone to experiencing it and then moving on to the next,” she says. “They live in segments, understanding that the future has been truncated but is not without involvement and interaction.”
“They move from preparing for the milestone to experiencing it and then moving on to the next. They live in segments, understanding that the future has been truncated but is not without involvement and interaction.”
Terry currently takes a combination of steroids, hormonal therapy, a blood thinner, and drug infusions for his osteoporosis. His bone mass is increasing, he says, and he hopes Sartor will let him resume snow skiing this year.
Terry doesn’t know what will come next, recognizing there is no standard protocol for his situation.
“You know it won’t be a one-treatment home run,” Sartor says, “but by the time you hit a double and a couple of singles and put them all together, the actual benefit to individual patients can be quite substantial. Not only are we getting better drugs, we are able to control side effects, and, as we move forward, I have a feeling of optimism. There is a whole slew of new drugs coming down the pike.”
In the 12 years he has been Sartor’s patient, Terry has followed him from Shreveport to New Orleans to Boston and back to New Orleans. “As long as he is on the earth, I will find him because I trust him,” Terry says.
Damaskos says she has also seen more of this kind of doctor-patient relationship because patients want more than just to survive—they want their symptoms managed well and more help living quality lives.
The Terrys live close to their son, daughter-in-law, and teenage grandchildren. Their older son works closely in the family business with Denny, who still works full time. Their younger son, now 40, has Down syndrome and lives in a group home the Terrys helped start 27 years ago. They also have a daughter who is an attorney in New Orleans.
Last year the whole family took an Alaskan cruise to celebrate Denny and Judy’s 50th wedding anniversary, and this year the couple is going to Alaska with three other couples to fish for salmon. The upcoming trip is the first thing on Terry’s newly formed bucket list.
“My faith, my family, and my friends, along with a terrific doctor, have given me the courage to see each day of my life as a gift,” Terry says.
Patients want more than just to survive—they want their symptoms managed well and more help living quality lives.
Terry says he and his wife, Judy, immediately decided to seek out options, no matter how far they took them from their home in Jackson, Mississippi, where he owned a distribution company. Terry first tried to join a clinical trial in Maryland, and, although he wasn’t eligible, testing revealed a small tumor on his kidney that appeared to be the beginning of renal cell carcinoma, so part of his kidney was removed.
“We decided we weren’t going to plan any funerals, and that we would be proactive and live life as fully as we could,” says Terry.
He changed his diet and then began a treatment vaccine clinical trial at Dana-Farber Cancer Institute in Boston. In 1999 he heard about a bright young oncologist in Shreveport, Louisiana, who specialized in metastatic prostate cancer named Oliver Sartor.
“I told him I would do anything,” Terry says with a chuckle, “and we have.”
Terry says he has been on a drug, a clinical trial, or combination of drugs since he was diagnosed. He says the drugs have impacted his libido, but sexual function returned six months after surgery.
Sartor explained to Terry that a rapidly climbing level of PSA (a protein made by the prostate gland and found in the blood) would be the barometer for moving on to something new.
In 2009 Terry had radiation for two metastatic spinal tumors, but has yet to have any bone pain, something Sartor says is a major concern for most men since bone is the most frequent metastatic site.
“The problem with bone mets is several-fold,” Sartor says. “They cause pain and they cause fractures because they weaken the bone. Those who have pain are just miserable. If you don’t relieve the pain then nothing else will go well. There is no quality of life if there is pain.”