When Fighting Cancer Isn't Worth It
The most aggressive treatments currently available aren't right for everyone
This article originally appeared in The Atlantic on December 13, 2012.
By Mary Mulcahy
The war on cancer is a civil war. It is a battle of two armies, cancer and therapy, fighting it out within a common space. It is an unfair fight.
A recent article in the Washington Post describes a controversial surgery devised by a pioneering and big-thinking surgeon, Paul Sugarbaker. This surgical procedure, known as cytoreduction and heated intraperitoneal chemotherapy (HIPEC), removes metastatic cancer before bathing the abdominal cavity in heated chemotherapy. There are many who celebrate it as life-saving, some who loathe it as toxic, and others who debate its merits and shortcomings endlessly.
The approach may be right for some particular tumors (e.g. pseudomyxoma peritonii), but is certainly wrong for others, and remains untested in still others (stomach, colon). The greatest advance seen in this procedure is the reduction in complication rates and the better selection of appropriate patients. Still, one percent of those treated die during or shortly after the operation, and about 12 percent experience serious post-operative problems. The greatest failures that accompany this procedure remain the lack of scientifically sound proof of effectiveness, as well as the perceived lack of alternative treatment for the patient.
HIPEC surgery is complex and arduous, often lasting 12 hours or more. Given the intensity of the procedure and the likely need to travel to one of the 27 states that boast of an expert, those who pursue such treatment tend to be highly motivated, younger, healthier, and wealthier. These patients also tend to use the militaristic lexicon that often accompanies a cancer diagnosis -- "fighting a war,""winning a battle,""not giving up." Dr. Sugarbaker is their ally in that war.
In more than a decade of treating patients with gastrointestinal tumors, I have had more than a dozen proceed with this approach and another handful who wished to but were turned down by surgeons. Did these patients who received HIPEC benefit from this surgery? No one has been cured, some may have lived longer than they would have without it, and some undoubtedly suffered as a result. Over these 10 years, there have been advances in chemotherapy that have allowed patients longer lives, as hoped for with this surgery.
Unfortunately, in the war on cancer, a chance at a cure is the only acceptable option for most. Simply living longer doesn't cut it.
The scientific merit of HIPEC has been discussed and debated eloquently by others. When I speak with patients considering this surgery, I encourage them to identify their goals and consider their definition of an acceptable outcome. These are motivated people who desperately want to be well again, and they see the chance of a cure in their sights. I ask them what they have heard from their surgeon, and many say things like "He thinks he can get it all," or echo the hollow statistical report: "There's a 50 percent chance." To which I always reply, "Chance of what?"
The reality is that the majority of these patients will not be cured and will continue living with cancer. In the best of cases, when that cancer returns, devastating disappointment ensues. Still, most patients resume chemotherapy just as before, with no regrets for having gone through this surgery. In the worst of cases, patients never recover, experience continued wasting, suffer bowel obstructions, and endure misery for the remainder of their lives.
Regret is a terrible emotion to live with, as well as an often unbearable feeling for caregivers and loved ones that can linger long past a patient's death. In our Western culture, regret is most commonly associated with not doing something or missing out on some opportunity. As Mark Twain said, "Twenty years from now, you will be more disappointed by the things that you didn't do than the ones you did do." To turn down a chance at a cancer cure is unthinkable.
My job is to arm patients with the information they need so they make a thoughtful decision and move forward with no regrets. If the goal is curative, I encourage them to ask their surgeon, "What are the chances that this is going to cure me?" If cure is not the goal, I want to ensure they have a clear understanding of this surgery's benefits. Will undergoing HIPEC prolong life? Will HIPEC improve quality of life? These are simple, pertinent questions that, unfortunately, often go unasked.
One of my patients, Joanne, was 32 years old when she was diagnosed with metastatic colon cancer with peritoneal tumors. She had her main tumor removed but was left with others on her abdominal lining. She was treated with chemotherapy and had good control of her disease -- without any expectation of cure. She continued working, attending her children's soccer games, Girl Scout meetings, and engaging in other activities that brought meaning to her life.
Joanne and I had discussed HIPEC, and she was reluctant to consider it. Eventually, she decided to speak with a surgeon who specializes in peritonectomy. She asked him the tough questions and continued in her inquiry until she had a clear understanding of the surgery's benefits and risks. Once she did so, Joanne decided the disruption in her daughters' lives that would occur as a consequence of HIPEC and its recovery process was not worth the unlikely odds she had of being cured. Joanne lived a full and rich life for five more years. She was fully present for her daughters and her husband, and she prepared them all as best she could for their futures -- eventually to be lived without her.
This procedure has helped many people; there are numerous testimonials and scientific reports detailing such success. But to offer HIPEC as the only option, the only hope, is unfair. It is also incomplete. Patients should be armed with clear information, lacking in euphemism but directed in setting well-defined goals. Since I recall only one patient that declined HIPEC when the surgery was offered, it is clear that most will continue to pursue winning the battle -- even if they lose the war.- Mary Mulcahy is associate professor of hematology/oncology at the Feinberg School of Medicine at Northwestern University.