Sue Harmon also knows the pain of dealing with a life-threatening disease when you have a young family that relies on you. Diagnosed in December 1998 with invasive ductal carcinoma that had spread to two lymph nodes, she was a 32-year-old mother of two young girls, then aged 3 and 6 months. After a lumpectomy, she braved six months of intense chemotherapy, followed by radiation. “Being young, I think my body was able to fight harder, to really pull me through the chemo. And I have a lot to live for—if you haven’t seen your kids grow, if you haven’t seen them even get into school, you’re going to fight as hard as you can. Not that a 60-year-old wouldn’t, but if they’ve seen their children get married or maybe have grandchildren, it’s a different fight.”

Of the roughly 186,000 women who are diagnosed with breast cancer each year, only about 10,000 are under age 40. But despite the relatively small numbers and an all too common “one-size-fits-all” approach to the disease and it’s attending concerns, breast cancer can have a very different impact on its younger victims, in terms of its virulence, the range of treatment options available, and its subsequent effects on sexuality and reproduction.

The news is both good and bad, as Dr. Jeanne Petrek, a Breast Cancer Surgeon and Director of the Surgical Program at New York’s Memorial Sloan-Kettering Cancer Center, ack-nowledges. “Younger women often do have more aggressive disease than older women. But they tend to respond just as well because you can give them all kinds of complicated surgeries and intensive treatments you sometimes can’t give an older woman. The younger patients are usually physically stronger, have fewer complications, and they don’t expect to die. They’re just more resilient. They used to say that older women don’t do so well with chemotherapy, but what they actually meant was that we couldn’t get as much chemotherapy into them as we could in the young woman. If we were able to give them the same amount of chemo, they’d probably do equally well.”

According to Dr. Petrek, many young women who’ve been diagnosed are genetically predisposed to the disease. In fact, it was Sue Harmon’s family history that prompted her to resume her routine monthly self-exams shortly after she’d stopped breastfeeding her daughter Molly. She found a lump.

With chemo and radiation behind her, Harmon is now taking tamoxifen, and will continue to do so for five more years. Because her tumor was driven by estrogen, childbirth and breastfeeding probably helped “pump it up” she says, but based on its size (1.3 cm.), her doctors estimate that it had been growing for at least 8-10 years. To prevent recurrence, the goal now is to eliminate as much estrogen in her body as possible. “They’re trying to put me into menopause and are hoping they can do it with the tamoxifen, since the chemo didn’t do it. But I’ve told the doctors I want my ovaries taken out, which would help eliminate a lot of the estrogen. It won’t take care of all of it, but the tamoxifen will stabilize what’s left.”

But according to Dr. Eva Singletary, Chief of the Surgical Breast Section at Houston’s M.D. Anderson Cancer Center, most young women with breast cancer tend to have estrogen-receptor negative tumors. “This means they’re less likely to respond to anti-estrogen treatments, whereas older women tend to have estrogen-receptor positive tumors that generally do respond to anti-estrogen treatment.” The one treatment that seems to work across the board, however, is chemotherapy. And it’s becoming more and more common, she says, to use it as the primary weapon in fighting breast cancers—even the early-stage disease found in younger patients. “We’re now doing chemo for any invasive tumor over 1cm., with or without node involvement. So the majority of breast cancer patients are going to be affected by [chemo], particularly in terms of side effects.”

Roughly 10-20% of young breast cancer patients experience early menopause as a result of chemotherapy, but those women tend to be older and closer to their natural age of menopause. As Dr. Petrek points out, most women under 35 will be menstruating regularly a few months after treatment ends. However, she concedes that the majority of women who undergo chemo—even if they get their periods back—will probably experience an earlier-than-normal menopause, usually by a couple of years.

Reproductive concerns are, of course, among the most painful issues that young breast cancer patients face. For many women, like both Harmon and Kinnas, who already have children, it’s a non-issue: Rather than risk a recurrence, their childbearing days are over. However, for those who are still hoping to have children, it can be a game of Russian Roulette. Even Petrek, who has done extensive research on the subject, can’t say for sure what effects the increased hormone levels of pregnancy will have on breast cancer survivors. “I’m sure it’s safe in some and not safe in others, but we just don’t know who’s who. We can’t guarantee it.”

There is reason to be hopeful, however. The last half of 1999 saw the introduction of some promising new technologies to suspend one’s fertility, including ovarian transplants using live and frozen tissues. But procedures such as these are still in the early stages of testing so it will be several years before they’re available to the public.

In terms of reconstruction, the good news for young survivors is that they have many more options available than their older counterparts. “Some of the microvascular procedures for reconstruction, which provide a slightly better appearance, are eight- or ten-hour operations and would only be available to the youngest women,” says Petrek. “A younger woman has the physiology to undergo complicated surgical procedures, so she’ll always end up with a good reconstruction.”

And that’s particularly good news for the young and single breast cancer patient, says Dr. Singletary. “Most of those women are interested in breast conservation or immediate reconstruction. Obviously, for them, body image is very important.” In fact, one of those more complicated procedures, known as the Transverse Rectus Abdominis Musculocutaneous (TRAM flap), gave Kinnas back the one thing she was still missing years later. After two bad experiences with silicone implants, she recently had a breast reconstructed using excess tummy tissue left from her pregnancies. “It’s the first time in years that I’ve felt truly feminine. When I wear a bra, I even have cleavage again.”

Among the least-discussed of all issues young breast cancer survivors face are those of sexuality and libido. “There’s always a temporary hit with sexuality,” says Dr. Petrek, “from pain, and weakness or fatigue. But you hope it’s not persistent.” Although everyone’s experience is different, the total package of life-threatening disease, debilitating treatments and physical changes can combine to push some relationships to the breaking point. Under the circumstances, it’s extraordinarily difficult to feel good about yourself, or your chances for survival, without some regular source of support—a partner, family, friends or even therapy.

It’s also crucial to have a doctor who you feel comfortable talking about your sex life with. Not only can he or she help you set realistic expectations, but they can also recommend helpful products and techniques. “A lot of young women feel guilty, that [they have breast cancer because of] something they’ve done. But most of the young women don’t have significant risk factors; it becomes the job of the doctor to refocus ‘Okay, we have a problem and here’s what we have to do.’ Our goal is to get that patient back to her original lifestyle.”

Another source of valuable information and comfort is talking with other young survivors. For Kinnas, diagnosed fourteen years ago when breast cancer was still thought of as “an old ladies’ disease” and before the advent of many support groups, this was one of the most difficult parts of her experience. “ I didn’t have any hair or a breast, and I had no one to talk with or relate to. I would talk with women who’d had [breast cancer] way back, and they were still here even though they hadn’t even had chemotherapy. That was a great inspiration for me, but the emotional impact of being a young woman, a wife, and a mother with breast cancer—and not being able to share that with anyone—was very difficult for me.” This is one place where Harmon’s experience will be vastly different.

Not only do a wide array of support groups now exist, but many have information specifically tailored for younger women. In addition, young women today are much more outspoken about breast cancer, and many already know someone who has had it. In fact, a few of Harmon’s friends who have been there themselves were there for her last year. And now she’s actively involved in a number of organizations, talking with other young women. “At least now we’re creating the ruckus we need to make people realize—whether it’s doctors, hospitals or people in general—that breast cancer does happen to young women,” she says. Adds Dr. Singletary, “If patients are open about discussing their breast cancer, they’ll find they have a lot more support.”

Today, both Harmon and Kinnas, are healthy and living active lives. Both have grown from their experiences, as well. Three years ago, Kinnas realized her dream of opening a store for women diagnosed with cancer, Fiona’s Specialty Boutique, a shop that provides wigs, breast prostheses and bras, “and the emotional support of being a survivor myself.” Harmon was recently named Pledge Chairwoman of the Susan G. Komen Foundation’s New York Race for the Cure, thanks to her phenomenal fundraising efforts for the race that took place in the fall of 1999, where she single-handedly raised $44,000. No doubt, her enthusiasm played a part, as well: “Like my husband says, now I have a title. I’m not only a young survivor, 32 years old and had cancer, but now I’m the Race Chairperson and I have something to say. I can play my drum a little louder; I’m entitled to do it now! And that’s great, because for me, the best therapy is helping other women.”

American Breast Cancer Guide
www.abcgonline.com


American Cancer Society
800-ACS-2345 (227-2345)
www.cancer.org
Offers booklets on sexuality and cancer, coping with small children, and relationship issues, as well as many other publications. Also publishes tlc, a catalog featuring wigs, hats, turbans, clothing, prostheses, etc.

www.breastcancer.net
Click here for access to the BCN Newsletter, a free compendium of all the latest news and resources for cancer survivors, health professionals and legislators. The newsletter offers summaries and/or critiques, background information, conclusions, and potential implications for each news item listed; reviews recent publications and Web sites; provides helpful links to obtain more information; and is updated regularly. An archive of over 1800 other cancer-related news items is also available.

Cancer Care, Inc.
800-813-HOPE (4673) counseling line
email: info@cancercare.org
www.cancercare.org
Offers many informative booklets for young breast cancer patients on topics such as sexuality and helping children understand cancer.

The Susan G. Komen Breast Cancer Foundation
800-IM-AWARE (462-9273)
888-603-RACE
(automated information re: the Race for the Cure)
email: helpline@komen.org
www.breastcancerinfo.com
Provides general information and support regarding breast cancer and related issues. Also sponsors the Race for the Cure, which takes place in numerous cities across the country. Call or see the Web site for times and locations.

National Alliance of Breast Cancer Organizations
888-80-NABCO
email: nabcoinfo@aol.com
www.nabco.org
Offers information specific to young women with breast cancer.

SHARE, Self-Help for Women with Breast or Ovarian Cancer
212-382-2111 (Breast Cancer Hotline)
www.sharecancersupport.org
Offers resources and information, wellness programs, support groups, education and advocacy, with some information specifically for the young breast cancer patient.

The Y-ME National Breast Cancer Organization
800-221-2141
email: help@y-me.org
www.y-me.org
Sponsors the Y-Me Tele-friends Network for Young Women, a free monthly one-hour teleconference featuring news and information, q&a’s and open chat time for young women with breast cancer. (www.y-me.org/5-support.htm)

The Young Survivors Coalition
212-577-6259
www.youngsurvival.org
A volunteer network of young survivors, based on the web and in the New York metropolitan area, who offer support and bring attention to issues surrounding breast cancer in young women.

Courtesy of Laurie Sprague