If people and statistics were the same, Caroline Kiley would have both her hair and her breasts. And her private business would still be private.
By the statistics, she should not have been diagnosed with breast cancer.
She's young, just 38. She had no family history of breast cancer. She's athletic and lean. And she'd just had a clear mammogram and physical exam. She eats well and takes care of herself.
Taking care of herself is why she found her breast cancer in time to save her life, a full two years before some official recommendations say she would need her first baseline mammogram. She did monthly self-examinations consistently, spurred partly by the stories her buddy, Dr. Erika Lloyd, told her about young patients who shouldn't have the disease but do.
She likes to say that Lloyd saved her life, because when she first found the lump, her friend told her to get it checked. And when the biopsy was positive for cancer, it was Lloyd, a general surgeon at St. Mark's Hospital, who performed the double mastectomy Kiley decided was her best shot at survival.
Lloyd says Kiley saved her own life and other women can do it, too, if they pay attention to their own bodies. Monthly self-examinations are critical, she says. If you're someone who develops breast cancer young, it may be your only clue to what's going on until cancer has become very advanced.
The two women, who are the best of friends, met six years ago when their sons were born. Lloyd's son, Justin, was born in late July but he remained in St. Mark's newborn intensive care unit for a while. Two weeks later, Kiley gave birth to Henry, who also spent his first days in the NICU. There, the women met and found they really liked each other. When their babies were well, they kept in touch and starting doing things together. Their easy chatter is mixed with information about breast cancer, yes, but it's also full of reminiscences about the times they hiked together or their families took a trip together or the memorable occasion when Kiley was ski racing and Lloyd was packing baby Justin on her front and baby Henry on her back.
In the course of their easy, freewheeling friendship, Lloyd told Kiley about patients who were being diagnosed with breast cancer in their early 30s. Kiley was determined not to be one of them. She got screened, and in February, doctors found no sign of breast cancer. Two months later, she found a lump and began the odyssey that is breast cancer, with surgery and sentinel node tests to see if the cancer had spread, then chemotherapy and reconstructive therapy and more.
Unlike some of the women who are diagnosed, she had a friend who was the perfect coach for the journey. "It's made it a little easier for me to follow the process." And while she says she's gotten personalized care, Lloyd assures her that's what a good medical team provides anyone. Your doctor doesn't actually have to also be your best friend.
Lloyd is often the person who gives patients "the most devastating news you can get. I have to sit down and tell them they have breast cancer." But she's also the one who gets to help them figure the steps of their own journey, offering information, resources and support.
Kiley's cancer appeared to be confined to one breast, but it was aggressive and fast-moving. "She'd have been in trouble in three months," says Lloyd, had she decided not to worry about that lump because her recent screening test came out OK. Kiley had to have some lymph nodes removed. She opted to have a double mastectomy and the breast reconstruction began immediately, the first stages completed in the operating room right after the mastectomy. She could have chosen a lumpectomy and radiation therapy. Take your time and decide, her friend counseled. While breast cancer is certainly a worry and can be life-threatening, it's not a medical emergency that requires instant decisions. You have a little time to consider your life and the ramifications of your treatment decisions.
After thinking about it and asking questions, Kiley opted for the more aggressive counterattack to her fast-growing cancer because she didn't want to worry about the other breast. A breast is just tissue, a small part of her whole person, she decided.
Initially, her sentinel node tested negative for cancer spread. But the final pathology report found that cancer had spread there, so she had another surgery to remove nodes, followed by four months of weekly chemotherapy.
Lloyd sat with her during chemo. "I'd never done that before." She shared tips and tricks that other patients had told her helped them get through the treatments and the fear. And the doctor learned more about the process from a different perspective, which can only help her help her other patients, she believes.
It was Lloyd who told Kiley that losing her hair might upset her more than she expected. Kiley thought that was the last thing she'd care about. When it started to fall out, "it was actually really really hard."
Lloyd's not sure how many times she's told her pal "all my patients go through this" or "say that. You get over it."
They're the funniest of people, constantly amusing each other, and their banter is free-flowing. They crack each other up, and both use their hands to talk. But they are also pretty private people, they say. It took breast cancer to move them to the role of activists, willing to talk about very private things, like having your breasts removed.
Kiley, who is a kindergarten teacher's aide in Park City, says she can hardly shut up about breast cancer now, not because she's suffered through it, but because she doesn't want one life lost to it. She tells her story to young women so they, too, understand the importance of ignoring statistics and taking charge of their own bodies. She also offers those making the journey behind her tips on what helped her get through treatments that were, frankly, rough.
Because she was an athlete who ran 8 to 10 miles a day before her diagnosis, she was in peak condition. When she was at her sickest, she still kept exercising and "I actually didn't have one day I couldn't get out of bed." That, despite the fact she had three major surgeries in less than a month.
"I feel passionately that exercise and fitness plays into every aspect of recovery," Kiley says.
It's not just about attitude and feeling better, adds Lloyd. "Even minimal levels of regular exercise decrease recurrence. Survival increases significantly."
That's something Kiley tells women she meets who have breast cancer. A friend with the disease called her once and said she simply couldn't get out of bed. Kiley talked her into walking around the block. Once she got started, she walked even further and felt a lot better.
"You have to make the most of the energy you do have," Kiley says.
You also have to make the most of the support network that's available, says Lloyd, whether friends or others who have been through it. "You're not alone in this," she says.
She warns women to "Never say never. Caroline should not have gotten breast cancer. Period. End of story. But that's how breast cancer is."
Kiley could have worked during her treatments, but it was summer and she decided instead to devote her time to Henry. Many women do work through chemotherapy, Lloyd notes.
They've become advocates for women. A couple of weeks ago, they walked together in the American Cancer Society's "Making Strides Against Cancer" fund-raiser. Kiley is happy to talk to women who've been diagnosed with the disease to give them the been-there, done-that perspective. And both are committed to warning young women that they, too, could be in danger.
Kiley's prognosis is good. She's through with chemotherapy and now will take Tamoxifen for five years, before she can be considered cancer-free. She knows she's got to be diligent for the rest of her life. That's OK with her. She expects to be around a long time.
As a team, "we're doing everything in our power to optimize her survival," adds Lloyd.And while she's diligent, they know that time is on Kiley's side. "There's so much progress every day, every week" against the disease, Lloyd says.
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