Getting Your Head Around the Diagnosis
Once you beat breast cancer, you just want to put the illness behind you. But it’s hard to shake the fear of a recurrence. The greatest risk is in the first three to five years, but beyond that there’s always a chance it will return — or that you’ll develop a totally new cancer. Here’s what it’s like when it happens and how to handle it, from 12 women who have faced that very scenario.
No woman expects to be diagnosed once, much less once again.
- "I was furious when I was diagnosed because I’d done everything I could to get rid of it the first time: a double mastectomy, chemotherapy, and five years of tamoxifen," says Deborah Hampton, 55, a writer in Hixson, Tennessee. "But I didn’t want to be angry for the rest of my life, so I told myself that while I didn’t have control over what happened, I did have control over how I responded."
- "I thought I had maybe two weeks," says LuAnn Hudson, 44, a database administrator in Cincinnati who was diagnosed with a recurrence in July 2006, eight years after her initial bout. "My 19-year-old daughter and I cuddled and cried all night. But then I figured, even if there’s a two percent cure rate, someone is getting cured. It might as well be me."
- "I accepted the diagnosis but not the prognosis," says Carol Silverander, 60, of Santa Barbara, California, author of With the Help of Our Friends from France: Stabilizing and Living with Advanced Breast Cancer. "After my recurrence in 1999, my oncologist told me she thought I had two years to live, which was way too frightening and overwhelming. Fortunately, I knew from Lance Armstrong’s story of advanced testicular cancer that a metastasis isn’t necessarily a death sentence."
Shifting from "Curable" to "Chronic"
If you’ve had breast cancer, you’re likely on a stepped-up surveillance program, so many recurrences are caught early. But for those with a metastasis, the focus of treatment shifts from attempting to cure the disease to controlling it.
- "My doctors are no longer trying to hit my cancer with everything they’ve got, and at first I wondered, why aren’t they doing more?" Hudson says. "Now I understand that the focus of treatment is on quality of life and preventing side effects, so my job is to stay as positive as I can."
- "I distinguish cure from healing," Hampton says. "Cure means the absence of disease, and some of us are never going to get there. But healing — as in to be whole, authentic, and open? By that definition, breast cancer has brought healing to me and my life."
Telling the News
Trust your instincts about how — and with whom — to share the news.
- "I was so shocked by the second diagnosis that I didn’t tell anyone except my husband for at least a week," says Robyn Eley, 48, a marketing communications specialist who lives in Franklin, Indiana. "I wasn’t ready to face other people’s reactions until I had worked out my own."
- "After my first diagnosis, I told pretty much everyone, but the second time, I was more discriminating," says Cynthia Gaylord, 45, a yoga instructor in Chatham, New Jersey. "After my third diagnosis, I told almost no one. Although people mean well, constant phone calls can be annoying."
- "I didn’t want to tell my friends at first, because I felt almost guilty," says Nancy Wellborn, 62, who’s retired and lives in Peoria, Arizona. "I remember thinking, how can I do this to them again? They must be tired of hearing about my cancer. But people have been just as great this time around."
Dealing with Friends
Their worry and concern can add up to a lot of uneaten casseroles — and unhelpful advice. These veterans have found ways of handling it.
- "I made a list of things I might need help with, so when people called and asked what they could do, I’d give them an item from the list," says Linda Oken, 64, a retired computer consultant in Bala Cynwyd, Pennsylvania. "I got the help I needed, and my friends got to do something."
- "One of the hardest things for friends to deal with is seeing you bald because it shows that you’re sick," Wellborn says. "But I learned the first time that if I can laugh about it, my friends know how to respond. When I lost my hair with my recurrence, I got an old wig and made a comb-over one day and a mohawk another."
- "Everyone has advice or suggestions about treatment, care, and recovery," Oken adds. "I listen, but if someone is too intrusive, I say, ‘Thank you. I know you really care about me, but what you just said makes me feel worried (or sad or scared). What I really need to hear from you is just that you care.’ "
Putting Fear in Its Place
No one has a second — or third — bout of cancer without massive anxiety. But you don’t have to live your life in fear.
- "Continuing to work has given me a reassuring sense of order and normalcy," says Lucille Byrne, 59, an associate hospital director who lives in Ardmore, Pennsylvania. "Everyone at work knows, but they still see me as a colleague, not a cancer patient."
- "I try to schedule worry time," Oken says. "When I start worrying in bed at night, I pull out a piece of paper and write ‘I will worry about this in the morning at 10:30.’ That eases my mind and helps me get to sleep."
- "Music helps me cope," says Renae Bridewell, 57, a buyer for a power company in Grand Forks, North Dakota. "I lie down in a dark room with great Christian music playing and always get up refreshed, with an ‘I can do this’ attitude."
Finding Joy Every Day
You’re not going to die tomorrow, but it can be good to live as if you might.
- "When I was diagnosed the second time, we bought Mattie, a long-haired dachshund puppy," Silverander says. "Having a lapdog in bed with you when you’re not feeling well is wonderful."
- My husband and I are members of a travel club, and I told him, ‘We’re going to be on the bus every trip. I don’t care where it’s going, we’re going with it!" says Linda Hand, 62, a secretary in Clanton, Alabama.
- "After my diagnosis, I left my job as a computer analyst and began volunteering part time in breast cancer advocacy," says Vicki McFadin, 55, from Clayton, California. "People thought I was crazy, but this is a passion. My job was just a job."
- "My husband and I love to dance — especially polka — and we do it as much as we can," Wellborn says.
Becoming Involved in Your Treatment
During a first bout, you get to know your doctors. If it comes back, you’re already part of a team, which may give you a sense of power and control.
- "When my doctor was going to put me on Abraxane, a chemotherapy drug, last year, I asked if he would also put me on Avastin, because I had heard that they worked well together," Silverander says. "Now I’m on both drugs — and feeling great."
- "I don’t blindly follow my oncologist’s recommendations," says Beth Ausborn, 47, a retired model home coordinator in Birmingham, Alabama. "I do a lot of research on my own. There are more drugs than ever for advanced breast cancer, and you need to keep changing when your cancer becomes resistant to treatment. That’s how you try to stay one step ahead of it."
- "I was in a clinical trial for Tykerb, and I’m about to start another for a new gene therapy," Hampton says. "With a trial, you get top-notch care and close supervision as well as the opportunity to try something that might really help."
Groups for women with advanced cancer are hard to find, but there are still plenty of options if you get creative, as these women did.
- "Nothing compares with finding others who are walking your journey," Ausborn says. "Since I couldn’t find a local support group for my stage IV advanced cancer, I found a woman in my situation on breastcancer.org. She knows exactly how I’m feeling, physically and emotionally. She understands that it’s perfectly okay to have a pity party. There’s nothing worse than having someone tell you to be more positive."
- "I attend yoga classes at the cancer center where I receive treatment," Silverander says. "That’s the kind of support group I prefer — everyone focusing on getting healthy together."
- "My local affiliate of Y-Me sponsored a group for women with advanced disease," Hampton says. "Because it requires a commitment, it made me feel like I was entering a group of women who were deciding to be there for each other for the long haul. If you make friends with women with cancer, you’re going to lose some of them. But the friendships and the depth of those relationships are unmatched."
- "After my third recurrence, I put myself on the prayer list at church and talked to my pastor about using my time wisely," Byrne says. "I could let it all out with her in a way that I couldn’t with my family."
Considering Your Legacy
Some women say it’s actually therapeutic to think about what you’re going to leave behind.
- "Before my recurrence, my daughter was in private school and we had two expensive cars," Gaylord says. "I realized I was spending all this money trying to buy happiness, and that’s not where it comes from. I want my daughter to understand what really matters."
- "I was concerned about the financial future of my children since my husband passed away several years ago," Hudson says. "When I was diagnosed at 36, I didn’t have life insurance. Fortunately, some friends told me how to get the policy I had through my employer converted to an individual policy. It gives me peace of mind that my kids will have something if I go sooner than I want to."
- "I thought about what I want to teach my 32-year-old daughter," Byrne says. "We made bread and pies, and I’m teaching her to cross-stitch. If I hadn’t had a recurrence, I might not have gotten around to sharing those things with her."
- "I’ve written letters to my granddaughter in a bound book," Hampton says. "even if I don’t get to see her grow up, this will be tangible evidence of how much I love her — and she’ll know me through those letters."
What Oncologists Want You to Know About Breast Cancer Recurrence
Nothing can match a woman’s depth of emotion upon diagnosis, but an oncologist’s comes close. "You almost feel as if you’ve failed when the first treatment doesn’t work the way you’d hoped," says Aman Buzdar, MD, of the department of breast medical oncology at M.D. Anderson Cancer Center, in Houston. "It’s so disappointing." Here, what the doctors go through.
They Hate Breaking the News
"I never really get used to it, but my job is to be supportive and optimistic," says Laurie Weisberg, MD, a medical oncologist at Kaiser Permanente in South San Francisco. "I can’t fall apart, even when I’m very close with the patient, because there’s someone in the next room who needs me too."
There’s Always Hope
"Most patients think a recurrence means they’re going to die tomorrow, but we keep more women alive longer than ever," Buzdar says. "New treatments have dramatically changed the course of this disease. Some patients can live for decades after a recurrence." Adds Ruth Oratz, MD, director of the Women’s Oncology & Wellness Practice, in New York: "We see it as a chronic disease, like diabetes or heart disease. The goal is managing it with the fewest side effects."
The Treatments Don’t Have to Be Debilitating
"Most women are surprised that they can live fairly normal lives while they’re going through treatment for a recurrence," says Kimberly Blackwell, MD, director of the breast cancer clinical trials program at Duke University Medical Center. "The goal is to beat back the cancer but keep the patient feeling good — and we’re designing better and better therapies that do just that."
They Can Be There for You Emotionally Too
"I believe it’s the doctor’s job to band together with the patient, both physically and emotionally, to get them through the experience," says Julie Gralow, MD, associate professor of medical oncology at the University of Washington in Seattle. "I cheer with patients when they have a good scan and cry when they have a bad result."
They Hate Statistics
"Patients always want to know how long they have, but people are not statistics and cancer doesn’t read the textbooks," says Jennifer Griggs, MD, MPH, a medical oncologist at the University of Michigan. "It’s helpful to have guidelines, but there’s no good way to predict how an individual woman or an individual tumor will respond to treatment."
They Admire Their Patients
"It’s such a privilege taking care of people with stage IV disease," Griggs says. "It brings both of us to our knees, but I’m always in awe of how well my patients handle it. Most women are way stronger than they think they are."
Originally published in MORE magazine, October 2007.