The effects of breast cancer on your body, your sex life, and decisions about your future can be devastating—but they're not the same for everyone. We spoke to experts around the country as well as a range of breast cancer survivors about what it all really feels like.
Also see part 1 of this series, about issues such as chemo brain, family companionship, and mastectomy.
Prior to surgery, Adriene Hughes decided on reconstruction.(ADRIENE HUGHES)Reconstruction or not?
Deciding how you want to look after breast cancer surgery is very personal, says Leslie R. Schover, PhD, professor of behavioral science at the University of Texas M.D. Anderson Cancer Center in Houston. “Not all women choose reconstruction after mastectomy; in fact, only 17% do. Its 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 arent so sure, though. “I have no plans for reconstruction,” says Debbie Arkin, 49, of Tampa, Fla., who had a double mastectomy to remove stage IIa invasive ductal carcinoma in 2006. “I love not wearing a bra. I had 34DD breasts and am enjoying the break from having all that weight on my upper body.”
Next Page: What about sex? [ pagebreak ]The first step to good sex is feeling emotionally connected. Try thinking about what makes you feel more in touch with each other.(GETTY IMAGES)What about sex?
Theres no doubt that having breast cancer isnt sexy. Hair loss, vaginal dryness, and other symptoms of menopause caused by a dip in estrogen—such as hot flashes and interrupted periods—dont help. But rekindling your sex life can be really restorative, says Marisa Weiss, MD, an oncologist and the founder and president of BreastCancer.org. “It may help to mix up your sexual repertoire to get in the mood. If youve 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.(HENDY DAYTON)“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 was diagnosed in 2003. “I didnt 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 was diagnosed with 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 couldnt 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 dont have to.”
Read about seven breast cancer survivors and their thoughts about sex.
Next Page: That queasy feeling [ pagebreak ]Kelly Corrigan, 41, author of The Middle Place, experienced low-level nausea during chemotherapy.That queasy feeling
Many women experience tummy troubles—particularly nausea—during chemo, as the drugs disturb the digestive tract. “Nausea generally occurs within one to three days after chemo, but we have lots of effective nausea medications to control it,” although constipation and indigestion may be unpleasant side effects of the anti-nausea medications themselves, 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.
“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 HER2-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 cant 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. Elizabeth Miller, 49, a senior vice president of design for a home-furnishings company in New York City, had stage III inflammatory breast cancer. When she was going through chemo after being diagnosed five years ago, she experienced a pronounced change in her taste buds. “Im not sure if it was simply a comfort-food thing, but I was very interested in smoothies, yogurt, and other ‘gentle foods,” Miller says.
Next Page: Fertility fears [ pagebreak ]Because chemo effectively shuts down estrogen and progesterone, there's always the risk that the hormones—and one's fertility—will never come back after treatment.(123RF)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, Dr. 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 Im sure Ill have them when Im ready to think about starting a family,” says Alice Crisci, 32, who is undergoing chemo after being diagnosed with stage I breast cancer in February 2008.
Stephanie Gensler, 39, an advertising account coordinator in Baltimore who was diagnosed with stage II aggressive breast cancer at age 34, wishes that someone had put egg preservation on her radar. “No one said anything to me, and I wasnt thinking about it. My doctor says its possible for me to get pregnant, but Im not sure it is,” Gensler says. “That was the hardest thing I had to deal with: learning that I may not be able to have a baby.”
Next Page: Looking older [ pagebreak ]To keep skin smooth, pat—don't rub—dry skin with a mild moisturizer.(GETTY IMAGES)Looking older
Skin takes a hit due to the withdrawal of estrogen, 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. “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,” Dr. Weiss of BreastCancer.org says. “They should always use an SPF of 30 or greater and wear a large-brimmed hat and sun-protective clothing.”
Fluid buildup after lymph node removal can cause swelling in your upper arm. A compression sleeve may help.(CLARKSORTHOPEDIC.COM)Its OK to exercise
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. Whats more, exercise is now recommended for both its physical and emotional benefits.
Still, some women do experience arm swelling, says Dr. 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, Dr. Weiss says.
Next Page: Facing the future [ pagebreak ]Cancer is a life-altering experience. Recovery may evoke conflicting feelings of anxiety, relief, and clarity.(GETTY IMAGES)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 post-traumatic stress disorder,” says Hendy Dayton. “I couldnt believe what I had just gone through, and I couldnt stop crying.”
For Kim Regenhard, who had a lumpectomy followed by chemo and radiation, every ache and pain brought a new fear the first year. “At the beginning, I think thats 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 someones 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 Kelly Corrigan, a northern California mother of two who created CircusofCancer.org, 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 theyre 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,” says Eloise Caggiano, 37, a three-year survivor who had a single mastectomy before beginning four months of chemo. “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. “Im 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?”
Read more survivor stories.
This content was first published in Health magazine, October 2008