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A head-to-toe look at breast cancer's real effects

  • Story Highlights
  • Breast cancer diagnosis is devastating, bringing fear and isolation
  • Chemotherapy could cause side effects such as forgetfulness, trouble concentrating
  • Numbness in the hands and feet from chemo can make daily tasks difficult
  • Rekindling your sex life can be really restorative, doctor says
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By Lambeth Hochwald
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Let's face it: Your mom, your sister-in-law, your co-worker, your best friend from college -- someone you know has had breast cancer. Someone you care about has sat white-faced, clutching the kitchen phone, or in a doctor's office, and gotten the scary news that every woman dreads -- news that one out of eight of us will hear in our lifetime, 250,000 of us this year alone.

Adriene Hughes talks to her plastic surgeon, James Chao, about the implants used for her breast reconstruction.

Adriene Hughes talks to her plastic surgeon, James Chao, about the implants used for her breast reconstruction.

If there's an upside to this breast cancer picture it's that the odds of surviving are getting better all the time.

In the United States, there are more than 2 million breast cancer survivors who are learning to live -- and live well -- with what was once a death sentence. That means there are even more opportunities for us to share the breast cancer experience with a friend or family member, and more reasons to try to understand what they're going through and how we can help.

To give you a realistic head-to-toe picture of what it's like to have breast cancer, we consulted the nation's best experts and talked to a dozen breast cancer survivors, including some who are still in treatment. Read this and you'll understand why your neighbor suddenly can't remember your last name, why your aunt doesn't want to wear a wig, and why your best friend just needs you to sit with her and hold her hand.

Feeling alone and afraid

Even with survival rates up, 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 her stage II metastatic breast cancer was diagnosed. "In the Caribbean, where I'm from, people cut you off when you admit to having cancer. My aunt wouldn't 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. Because of them I felt like I could do this. I felt empowered."

For Stephanie Gensler, 39, an advertising account coordinator in Baltimore, Maryland whose stage II aggressive breast cancer was diagnosed when she was 34, had a lumpectomy, a six-month regimen of chemo and 36 radiation treatments. The most painful part, she said, was going through breast cancer without a partner. "What hurt the most was going to bed alone."

The biggest fear of all, of course, is of dying-- a worry that doesn't soon go away. "I remember the Mother's Day after I was diagnosed. My son was 6, and I kept thinking I'm not going to be around to see him grow up," says Kim Regenhard, 51, a 10-year survivor who just published A Survivor's Guide for the Breast Cancer Journey. "Mother's Day is still very tough."

Memory takes a hit

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," deLeon-Lewis says. "But chemo absolutely compromised my short-term memory."

What's the chemo-fog connection? "It may be hormonally related," says Jennifer Litton, M.D., assistant professor of medicine in the department of breast medical oncology at the University of Texas M.D. Anderson Cancer Center in Houston, Texas. "Chemo can put a woman into menopause, and these are symptoms that go along with that. Postmenopausal women suffer, too, and we're not sure why." The fog lifts somewhat over time-- but not for everyone, experts say.

Almost 15 percent of women who've had chemotherapy will have chemo-brain for life, but deLeon-Lewis isn't 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."Video: See Pamilla deLeon-Lewis talk about her breast cancer journey.

A changing body image

How breasts look and feel post-cancer will depend on what's been done -- lumpectomy, mastectomy, 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, M.D., 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 it's 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.

Hair ... going, going, gone

The same drugs that target cancer cells can do a number on your hair follicles, says Eric P. Winer, M.D., a medical oncologist and chief of the division of women's cancers at the Dana-Farber Cancer Institute in Boston, Massachusetts and chief scientific advisor at Susan G. Komen for the Cure. "Depending on the kind of chemo, we know exactly when hair will fall out."

Regenhard lost her hair on a business trip. "It was a week-and-a-half after my first treatment," says Regenhard, who'd 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 learning she had stage I breast cancer in February. "It's 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 don't want to hide."

Eyelashes, eyebrows, and other body hair also may thin during chemotherapy but tend to take longer to fall out. "At one point I was down to three eyelashes," says Eloise Caggiano, 37, a three-year survivor who had a single mastectomy before beginning four months of chemo. "I was trying to be so gentle when I washed my face, and I kept willing those lashes to hang on." Crisci says she's 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, Winer says. When it returns, it's often grayer or curlier before returning to its original look. Meet seven women who lost their hair and how they coped.

Coping with pain

During treatment, bone pain can be terrible. Certain chemo medications, such as paclitaxel, can prompt muscle aches and joint pain, says Banu K. Arun, M.D., 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 in Houston, Texas. 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 such as 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," Crisci says. "The unfortunate thing is that no one knows how you'll react to chemo, so they can only make adjustments after you've 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 you're premenopausal and go through breast cancer treatment, you'll experience a 7 percent bone loss, some experts say. The good news is that women can do something about bone loss from weight-bearing exercise to taking vitamins such as calcium and vitamin D, oncologist Litton says.

Little things get hard

Numbness in the hands and feet from some chemo medications can make daily tasks like holding a pencil or buttoning 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."

There's no easy solution, says Marisa C. Weiss, M.D., an oncologist and founder and president of "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.

Reconstruction or not?

Deciding how you want to look after treatment is very personal, says Leslie R. Schover, Ph.D., professor of behavioral science at the University of Texas M.D. Anderson Cancer Center in Houston, Texas. "Not all women choose reconstruction after mastectomy; in fact, only 17 percent do. It's a really personal choice that has nothing to do with sensuality or taking care of yourself," she says.

Some women know that they want to have reconstruction done right away like Adriene Hughes who had a temporary implant put in after her single mastectomy and then had implants put in both breasts 18 months later.

Others aren't so sure, though. "I have no plans for reconstruction," says Debbie Arkin, 49, of Tampa, Florida who had a double mastectomy to remove stage IIA invasive ductal carcinoma in 2006 and is featured on "I love not wearing a bra. I had 34DD breasts and am enjoying the break from having all that weight on my upper body." Meet women who've decided for and against breast reconstruction

What about sex?

There's no doubt that having breast cancer isn't sexy. Hair loss, vaginal dryness, and other symptoms of menopause caused by a dip in estrogen such as hot flashes and interrupted periods don't help. But rekindling your sex life can be really restorative, Weiss says. "It may help to mix up your sexual repertoire to get in the mood. If you've never needed a sexy book or movie to get ready for sex, you may now."

"It was so life-affirming to have sex while I was undergoing treatment," says Hendy Dayton, 48, who has been married for 23 years and whose caner was diagnosed in 2003. "I didn't feel particularly attractive, but my husband affirmed that I was just as beautiful and that this was a temporary thing," she says.

Dawn Reinhart, who learned she had stage IIB invasive ductal carcinoma at age 34, had a more difficult time. "Before my diagnosis, my sex life was fairly normal," says Reinhart, now 44. "But after two surgeries, chemotherapy, and radiation, I completely lost interest in it. I couldn't get aroused. I would rather have had my taxes done than have sex." For Reinhart, it was also a physical problem: "My ribs were fragile after radiation, and it took some time to find positions that worked." Once she could get comfortable, she also tried some arousal products that helped. "I think so many women lose hope of having a good sex life after a breast cancer diagnosis, but they don't have to." Seven breast cancer survivors talk about sex

That queasy feeling

Many women experience tummy troubles, particularly nausea during chemo, as the drugs disturb the digestive track. "Nausea generally occurs within one to three days after chemo, but we have lots of effective nausea medications to control it," Winer says, although constipation and indigestion may be unpleasant side effects of the anti-nausea medications themselves.

"I had low-level nausea during chemotherapy," says Kelly Corrigan, 41, author of The Middle Place, who found a big lump in her left breast that turned out to be stage III HER-2 positive breast cancer, the fast-growing kind. "It reminded me of the first three months of pregnancy. I ate saltines and drank ginger ale as often as I needed to."

Chemotherapy also takes its toll on the mouth about five to eight days after treatment begins. The rapidly dividing cells that line the mouth can't do their normal job of replacing old cells with new ones, and this makes the inside of the mouth vulnerable to sores in two out of five women.

Others experience a metallic taste in the mouth or a change in taste.

When Miller was going through chemo after being diagnosed five years ago, she experienced a pronounced change in her tastebuds. "I'm not sure if it was simply a comfort-food thing, but I was very interested in smoothies, yogurt, and other 'gentle' foods," Miller says.

Fertility fears

Women with cancer who want to have kids can discuss egg preservation with an oncologist before beginning chemo, which can cause early onset of menopause and associated infertility, Weiss says. "During the years of hormonal therapy, pregnancy is unsafe," she explains. But when treatment is complete, survivors who are ready to become parents can discuss their hopes and options with their OB-GYN. "I froze my embryos, so I'm sure I'll have them when I'm ready to think about starting a family," Crisci says.

Gensler wishes that someone had put egg preservation on her radar. "No one said anything to me, and I wasn't thinking about it. My doctor says it's possible for me to get pregnant, but I'm not sure it is," Gensler says. "That was the hardest thing I had to deal with: learning that I may not be able have a baby."

Looking older

Skin takes a hit due to the withdrawal of estrogen, oncologist Litton says. "During chemo, women sometimes notice their skin is drier. There are lots of rashes. When you come off the drugs, the rashes go away." That means skin should be protected even more during chemo. "Women being treated for breast cancer are in a very sensitive time of life," Weiss says. "They should always use an SPF of 30 or greater and wear a large-brimmed hat and sun-protective clothing."

It's OK to exercise

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Not so long ago breast cancer survivors were told not to exercise for fear of getting lymphedema, painful upper-arm swelling and shoulder stiffness due to fluid buildup after lymph node removal. Today, lymphedema is far less common because breast cancer is generally caught earlier and most women now undergo a sentinel node biopsy where only the important lymph nodes in the underarm are removed. What's more, exercise is now recommended for both its physical and emotional benefits.

Still, some women do experience arm swelling, says Weiss, who prescribes manual lymphatic drainage which, simply put, is massage in an upward direction. "The goal is to encourage drainage of fluid up into circulation past your shoulder." Pumps and compression sleeves may also help. Survivors with arm swelling should avoid hot tubs, use insect repellent and oven mitts to avoid trauma, and get blood pressure readings or have blood drawn from the other arm, Weiss says.

Facing the future

Grief, fear, anger, anxiety. Breast cancer survivors feel it all at one time or another, experts say even after treatment is finished. "It was like I had posttraumatic stress disorder," Dayton says. "I couldn't believe what I had just gone through, and I couldn't stop crying."

For Regenhard every ache and pain brought a new fear the first year. "At the beginning, I think that's very normal," she says. A big transition for many survivors is easing from many checkups with a variety of docs to just one with a regular physician. She says, "You worry, 'What if it comes back and someone's not there to catch it?' That kind of adjustment is hard." This "cancer shock" fades after a few months or years for most patients, but many say the fear of cancer coming back is always with them.

Others are determined to look on the bright side. "I had eight cycles of chemo, a lumpectomy, and two months of radiation. But my cancer experience overall was extremely positive because I believe there are certain conversations, interactions, and intimacies that can only happen in the space around a crisis," says Corrigan, a northern California mother of two who created, a site to help women understand the upside of the cancer experience. "I had some of the best conversations of my life that year. You soon go back to bitching about how you need to get your windshield fixed. But I hope people will strive to connect while they're in that sacred space."

Getting breast cancer has a funny way of bringing clarity, survivors say, from who your friends really are to what you want to do with your life. "During treatment, I started thinking that I wanted to feel good at the end of the day and needed a job change," Caggiano says. "If I was going to work until 9 at night I wanted it to be for a good cause." She now works at the Avon Foundation, overseeing its signature breast cancer walks. "I'm putting my breast cancer experience to good use. I get to meet all these wonderful survivors, and I get hugs all weekend long when we do events. What sort of job do you have that lets you get hugs all weekend long?" 3 Ways to fight the fear your breast cancer will come back

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