March 2, 2009 -- Few wouldn't balk at the idea of prophylactic surgery -- the removal a healthy organ or gland that shows no sign of cancer in order to prevent cancer from developing in that organ or gland.
In other words, prophylactic surgery involves cutting from the body a perfectly fine organ.
Or a ticking time bomb.
Or a perfectly fine organ.
And that is the dilemma facing a segment of the population who, due to family history, genetics or personal medical history, are saddled with a higher risk of cancer than the rest of the population and may have to take drastic steps to prevent a disease that kills over half a million Americans each year.
But Brian Chelcun, 26, never wavered for a moment.
"I was seeing my dad go through the effects of having stage IV stomach cancer," said Brian, whose father died Feb. 8 of the disease. Chelcun was released from Massachusetts General Hospital in Boston last week after a gastrectomy to remove his stomach.
"Here's a chance to avoid going through something that is so hard, and difficult to cure," he said.
Chelcun's family is unique, one of perhaps 100 families in the U.S. with a genetic mutation that leads to an increased risk of developing gastric cancer. Because gastric cancer is difficult to diagnose even when in its later stages, the prognosis for those with the disease is poor, with a five-year survival rate of about 24 percent.
Chelcun's aunt and uncle on his father's side have both had successful gastrectomies, and Chelcun said he planned on doing the same within five years, undergoing endoscopies and biopsies about twice a year until he was ready for surgery. But one of his biopsies showed potentially cancerous cells.
"After they found that there was no real reason to wait," Chelcun said.
Strong evidence of hereditary stomach cancer coupled with poor screening methods may have helped make Chelcun's decision clear-cut. But sometimes the problem is more complicated.
There are innumerable variables for those confronted with a genetic predisposition to cancer who are considering prophylactic surgery. The most influential variables include the type of cancer, how effective screening techniques are and the potential outcomes of prophylactic surgery.
And even with the help of genetic counselors, therapists, physicians and surgeons, who are just a few members of any team helping a person who has found they are at risk for cancer, the decision must ultimately be a personal one.
"Any decision they make has to make medical sense as well as emotional sense," said Karen Hurley, assistant attending psychologist at Memorial Sloan-Kettering Cancer Center in New York. "Even with a strong recommendation to have surgery, you still have to find a way to make it your own and not just because somebody else told you to because, in the event of complications, that leaves you open to the possibility of regret."
Cancer: It's Not If, It's When
Lisa Held, 23, has made up her mind to have a prophylactic mastectomy within the next five years as well as an oophorectomy further in the future to cut her risk of breast and ovarian cancer due to a mutation in her BRCA 2 gene, which protects against these cancers.
"I've made the decision on the intellectual level," said Held, who works for a breast cancer advocacy group affiliated with New York Presbyterian Hospital and is active in FORCE: Facing Our Risk of Cancer Empowered, another advocacy group. "And I want to take control of the situation and take control of my life. But you have to be emotionally ready for it."
Held's hesitation is not unfounded.
Some cancers are more amenable to the "wait and see" approach than others. For example, yearly colon screenings are effective at detecting precancerous cells and staving off cancer for those who are at risk.
And advances in genetic testing have made it easier to pin down those risks. For example, women with BRCA gene mutations are about seven times more likely to develop breast cancer than women without those mutations.
"To have prophylactive surgery when you didn't know what your risk was was pretty drastic," said Dr. Sapna Syngal, director of the Familial Gastrointestinal Cancer Program at the Dana-Farber Cancer Institute in Boston, Mass. and associate professor of medicine at the Harvard Medical School. "Now you can know definitively."
And surgery can drastically decrease that risk.
Bethany Cove, 36, also has a mutation in her BRCA 2 gene but said she cut her risk of breast cancer to about 2 percent from 87 percent prior to her mastectomy operation. She found out about the mutation on her thirty-fifth birthday and six months later was on the operating table.
"Having to make the decision was easy for me. Looking at my family history, I didn't feel I could wait any longer," said Cove, from Billerica, Mass., who had four aunts out of six that had breast cancer, of whom two died before they were 50. "There wasn't a choice. I didn't want to have cancer."
Weighing the Risks of Prophylactic Surgery
But there may not be a direct correlation between a person's numerical risk and their decision to have prophylactic surgery, which makes tracking trends difficult.
"It depends what that percentage means in terms of risk and the effectiveness of screening," Syngal said. "Some people can deal with risk reduction and others don't want to have any risk."
For the risk-averse, strict surveillance seems to be the best option.
"You make sure, if they don't want to go through with the risks of surgery that they don't get lost to follow up," said Dr. Nicholas Petrelli, medical director of the Helen F. Graham Cancer Center in Newark, Del.
And Syngal said removing what seems to be perfectly healthy tissue via surgery, which has a built in mortality rate under the best of circumstances, keeps people away.
"Of course there's parts of me that went, what am I doing? To knowingly cut off healthy tissue," Cove said. "But fear of cancer treatment was bigger than doubt about am I doing the right thing."
And that fear may be the biggest driver for prophylactic surgery in people for whom cancer can be inherited like hand-me-down clothing.
"The fear of cancer is so much more pronounced because their whole lives have been watching people suffer," said Held, who has yet to see anyone in her own family survive their battle with cancer. "I know that I can survive surgery but I don't know that I can survive cancer."
Even so, the decision to undergo surgery -- especially when there is a change that it may not be necessary -- can hang in the balance under duress.
Cindy Chelcun, Brian Chelcun's mother, said the only time the family hesitated was the day her husband Greg died. But the family pulled together and pressed on in support of Brian's decision.
"I couldn't bear the thought of him going through what my husband went through," Cindy said. "I couldn't imagine having that happen to my son. And neither could his dad."
Read about the Chelcun family's story at www.bestronghearted.org.