Facing Breast Cancer's Toughest Facts

Lindsay Mulic was born with cystic fibrosis, a chronic, genetically inherited disorder whose effect on the lungs and pancreas can lead to frequent infections and hospitalization. That diagnosis was made when she was just six weeks old. By the time she was 19, her lungs had so deteriorated that her doctors began to talk about transplant as a certainty. Finally, in 2009, that happened. Her life since then, she said, "has been amazing."

But there was one more threat she inherited—and this month, when breast cancer experts nationwide urge women to greater awareness—Mulic's story takes on a more immediate importance.

Mulic lost her mother to breast cancer—and a grandmother and a great-aunt. Each year after her transplant surgery, she'd have a mammogram "and each time they showed something." And she was tested in a way that her relatives could not be—for those hallmarks of breast cancer genetics not identified until after her mother died, when Mulic was just five.

BRCA1 and BRCA2 are genes that produce proteins that fight tumor growth; if they are mutated, as tests showed they are in Mulic, then that absence of protection raises the risk of cancer, earlier in life, primarily in the breast or the ovaries. Such BRCA-related cancers also tend to be more aggressive and to appear in both breasts or recur in the same breast.

Without these mutated genes, about 12 percent of women will develop breast cancer. With a mutated BRCA1 or BRCA2 gene, the risk increases to 45 to 65 percent. Mulic's family history, with breast cancer at a young age in two previous generations, boosted her risk to 67 percent.

She also knew that as a transplant recipient, her risk of cancer was increased by the immunosuppressant medications needed to prevent rejection of her donor organ. The changes in her breast tissue, seen in her annual mammograms in the last two years, confirmed for Mulic that watching and waiting was less assertive than she wanted to be about the possibilities. Mulic received genetic counseling to learn about her risks. A panel of Stanford breast cancer experts will share their knowledge Oct. 10 at a community talk designed to help women raise their awareness of the risks they may face.  

After much thought, Mulic said, "I decided I needed to do something." To have her breasts removed, was "what I needed to do to be able to live." Her first inquiries were to her transplant team. "They had no problem with it. They said they would be there with me, by my side in everything."

Stanford's Center for Advanced Lung Disease is directed by David Weill, MD, one of the team that has cared for Mulic for nearly a decade. "When she told us she had this new issue, we spent some time counseling her about what impact her choices might have on her transplant, which we desperately—and she desperately—wanted to keep healthy. We were very attuned to that fact that doing any operation would not be something we would take lightly."

The concern, again, is the effect of the immunosuppressant medications, which impairs the body's ability to heal from surgical incisions and to fight off infections. "Anytime one of our patients is contemplating surgery we have to be aware that that person's immune system doesn't work like that of a person without a transplant," Weill said. "The thing we can do is to decrease the dosage of the immunosuppressants in a way that doesn't put the transplant at risk." 

Mulic chose the type of surgery that preserves the outer shell of the breast and, after post-surgical preparation, allows the most normal-looking reconstructed breast possible. "But the main goal is to give Lindsay protection from having another major health problem," Wapnir said. "Breast cancer in any young woman is tragic. In Lindsay, it would have presented some specific problems and limitations in how we would have been able to treat her. Our overwhelming concern was that giving her chemotherapy, for instance, might take her off balance on a multitude of other issues involving her transplant."

The transplant team monitored Mulic's lungs closely before, during and after the surgery. "We look at chest X-rays, lung function analysis, oxygen saturation and the blood levels of the immunosuppressant drugs," Weill said. Mulic's recovery, he said, "was beautiful and the health of her transplant lungs is very good. Here was a young lady facing a very difficult choice," Weill said. "It's very inspiring to see someone confront that directly and make such an informed and inspired choice."

As the days passed after her surgery, Mulic realized that for her, coping with another major physical alteration in her body was not as difficult as her emotional journey, something she had not expected at all. "All over the world, you hear about people going through transplants, but not most people talk about having a double mastectomy. "There were times when I just cried and thought, 'Will I ever get through this?' From a woman's perspective, you're taking away something that means a lot. That's hard."

But she was heartened by the support she felt throughout from her Stanford team. "They said, 'You have the strength to be able to have this surgery. It's the perfect time to do this.' I just trusted them."

Mulic has helped teach Weill and his team more about the longer-term health of people with transplants who are living "longer and longer, developing all the usual health problems that all of us develop as we get older. And as they do that, we're wholly reliant on other teams in other specialties to help us care for them—and that makes our job of keeping lung transplant patients as healthy as possible that much easier."

Wapnir looks at Mulic and sees a young woman whose natural appearing mastectomies have not changed her natural figure—and as someone "who has been released from the burden of yearly MRIs, mammograms or ultrasounds, as well as potential biopsies," she said. "Women like Lindsay now have choices which include prophylactic, risk-reducing operations in order to prevent breast cancer, while preserving at the same time a near-normal body image."

Years ago, Wapnir said, patients like Mulic "would not be here with us. By helping her the way we did, we make it possible for Lindsay to live a long, long time without facing treatment for breast cancer."