How does it feel to lose your hair? To be reminded so starkly of your mortality? To have a breast removed?
In order to give you a realistic head-to-toe picture of what this disease actually feels like, we've consulted breast cancer experts around the country and talked to a dozen survivors about the experience of getting through diagnosis and treatment—and back to the business of living.
Even with survival rates up recently, a breast cancer diagnosis is devastating, bringing equal parts fear and isolation. “It alienates you,” says Pamilla deLeon-Lewis, 57, a motivational speaker and poet in New York City, who did six months of chemotherapy and eight weeks of radiation after being diagnosed with stage II metastatic breast cancer. “In the Caribbean, where Im from, people cut you off when you admit to having cancer. My aunt wouldnt let me come close to her. I felt invisible.”
Friends—even some online—became more important to deLeon-Lewis during her treatment. “The women in chat rooms going through what I was going through made me laugh and cry," she says. "Because of them I felt like I could do this. I felt empowered.”
For Stephanie Gensler, 39, an advertising account coordinator in Baltimore, was diagnosed with stage II aggressive breast cancer at age 34. She had a lumpectomy, a six-month regimen of chemo, and 36 radiation treatments, but the most painful part was going through breast cancer without a partner. “What hurt the most was going to bed alone,” she says.
The biggest fear, of course, is dying—a worry that doesnt soon go away. “I remember the Mothers Day after I was diagnosed. My son was 6, and I kept thinking, Im not going to be around to see him grow up," says Kim Regenhard, 51, a 10-year survivor who just published A Survivors Guide for the Breast Cancer Journey. “Mothers Day is still very tough.”
Some treatments for breast cancer—like chemotherapy—are extremely debilitating. Forgetfulness, trouble concentrating, and foggy thinking are common side effects.“I always prided myself on remembering numbers when I worked on Wall Street,” Pamilla deLeon-Lewis says. “But chemo absolutely compromised my short-term memory.”
Whats the chemo-fog connection? “It may be hormonally related,” says Jennifer Litton, MD, assistant professor of medicine in the department of breast medical oncology at the University of Texas M.D. Anderson Cancer Center in Houston. “Chemo can put a woman into menopause, and these are symptoms that go along with that. Postmenopausal women suffer, too, and were not sure why.” The fog lifts somewhat over time—but not for everyone, experts say.
Almost 15% of women whove had chemotherapy will have chemo-brain for life, but deLeon-Lewis isnt discouraged: “I refuse to let cancer—or any of the medications to get rid of cancer—keep me down. I do crossword puzzles, word games, and anything else I can to keep my mind strong.”
How breasts look and feel post-cancer will depend on whats been done—lumpectomy, mastectomy, or radiation. Survivors deal with scars and sometimes dented breasts, in addition to breast removal and the side effects of reconstruction.
A mastectomy sometimes leaves a woman with numbness and tingling in the chest, as well as neck and back pain. “It causes a loss of sensation in the chest wall from your collarbone to your rib cage,” says Monica Morrow, MD, chief of the breast-surgery service at Memorial Sloan-Kettering Cancer Center in New York City. “The discomfort decreases over time, but as nerves regrow in a year or two its normal to experience occasional sharp, shooting pains or a feeling of something on your skin you want to brush off.”Radiation treatments can take a toll, too, causing extreme redness or dryness on the breast skin and changes in the color or texture of the nipple and areola.
The same drugs that target cancer cells can do a number on your hair follicles, says Eric P. Winer, MD, a medical oncologist and chief of the division of womens cancers at the Dana-Farber Cancer Institute in Boston and chief scientific adviser at Susan G. Komen for the Cure. “Depending on the kind of chemo, we know exactly when hair will fall out.”
Kim Regenhard lost her hair on a business trip. “It was a week and a half after my first treatment,” says Regenhard, whod had a lumpectomy, then chemo and radiation. “The first day I facilitated the meeting with short hair. The next morning my pillow looked like a squirrel. Then it came out in clumps in the shower. The day after that I went to the meeting with a wig on. Thankfully, I had a lot of support from the people in that room.”
Alice Crisci, 32, revels in being bald. “My thing is to get ahead of the change,” says Crisci, who is still undergoing chemo after being diagnosed with stage I breast cancer in February. “Its so liberating,” she says. “A shower or the wind feels great on my bare head. More important, for me, wearing a wig meant I was hiding the hellacious thing I was going through. I dont want to hide.”
Crisci says shes down to “like five pubic hairs. I tell people that I am having the most painless Brazilian waxes.” Hair typically begins to grow back within a month or two of chemo being completed, Dr. Winer says. When it returns, its often grayer or curlier before returning to its original look.
During treatment, bone pain can be terrible. Certain chemo medications, like paclitaxel, can prompt muscle aches and joint pain, says Banu K. Arun, MD, an associate professor in the department of breast medical oncology and co-medical director of clinical cancer genetics at the University of Texas M.D. Anderson Cancer Center. But the pain usually goes away after chemo is finished. Those who receive longer-term therapies, such as estrogen-blocking tamoxifen or an aromatase inhibitor like Arimidex, may experience pain for longer.
“After my first chemo, my bone pain was so severe, it felt like I had been hit by three Mack trucks,” Alice Crisci says. “The unfortunate thing is that no one knows how youll react to chemo, so they can only make adjustments after youve had your first treatment. The second round was a lot easier, and I started taking Motrin for bone pain before it even started.”
Just six months ago, before her stage IIIb inflammatory breast cancer spread to her bones and became more painful, Elizabeth Miller, 49, a senior vice president of design for a home-furnishings company in New York City, was appalled at the thought of taking pain medication. “Now I find myself waiting for the magic pain-medication alarm song that my son programmed into my cell phone so I can work and live without my breast cancer pain stopping me,” she says.
Bone loss is also a concern for breast cancer survivors. If youre premenopausal and go through breast cancer treatment, youll experience a 7% bone loss, some experts say. The good news is that women can do something about bone loss—from weight-bearing exercise to taking vitamins like calcium and vitamin D, Dr. Litton says.
Numbness in the hands and feet from some chemo medications can make daily tasks like holding a pencil or fastening buttons nearly impossible. “Taxol makes your feet and fingers tingle, and the small veins tend to go numb,” says Adriene Hughes, 48, who had a single mastectomy, followed by chemotherapy and reconstruction. “It also makes your body ache for five days. It feels like someone beat you up. You can barely move.”
Theres no easy solution, says Marisa C. Weiss, MD, an oncologist and founder and president of BreastCancer.org. “But there is some research on the benefits of B6 vitamins for numbness. And patients can manage pain with Neurontin.”
Women also sometimes get brittle nails on fingers and toes from chemo and burns from radiation. Most of these aggravating side effects go away eventually, but it may take time.
See part 2 of this series, about such issues as breast reconstruction, sex, fertility, and the future.
Read more survivor stories.
This content was first published in Health magazine, October 2008