"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."
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.