Shared Survival Breast Cancer Support Groups Give Hope And Strength During Trying Time

Two attractive bald women enter the small conference room laughing. One hands me a Polaroid snapshot.

In the photo, both women are in outrageous costumes, sporting “tarantula” wigs and hamming it up for the camera. They pass the picture around to the other three or four women already seated in a circle. Everyone cracks up, re-creating the surprise entrance the two made the previous week.

The women who regularly attend these meetings are teachers, nurses, accountants, single parents, social workers, wives and business executives. One woman is a nun. Statuesque, petite, angular, round; they range in age from 24 to 57. They meet weekly to share their experiences, their worries and disappointments, their progress and triumphs. They offer support to one another.

They all have a common goal: to survive breast cancer.

Support groups offer an insurance that can’t be bought, insurance that a woman with breast cancer is not alone; she is understood, she is heard, she is loved and accepted. Studies have shown that women who get emotional, social and spiritual support through group therapy may survive up to twice as long as patients receiving medical treatment alone.

A primary concern for everyone is, of course, the medical aspects of the disease. The most important thing to do, these women unanimously agree, is to get a second or even a third opinion. Many intuitively knew they had cancer even when doctors kept telling them differently.

Dana, 28, had a pea-sized lump for four years. She had mammograms and ultrasounds and was consistently told it was just a cyst. Still, she couldn’t shake the feeling that it was something more.

“It should have been aspirated,” Dana now says. “Why did they wait so long to do the one thing that was finally conclusive? They make it sound like it’s something to worry about only when you’re between the ages of 40 and 50. My cousin was told, ‘Don’t worry about it. You’re only 29,’ and her ‘cyst’ was cancer, too.”

When Toni was first diagnosed, the doctor gave her two months to live. That was two years ago. “I was hesitant to get a second opinion because I was afraid of authority. Now I ask questions and I’ll keep on asking questions. It is my life at stake here.”

Women are often intimidated by doctors and the health-care system. Since most women are caregivers, often in their professional as well as their personal lives, they have a hard time asking for support. They have to learn to be caregivers to themselves and learn to ask others to care for them.

Tess Taft, counselor and group facilitator, says, “So many women believe, ‘If I’m not really nice they might not work as hard to save me.’ But if women don’t take an active role in their own healing process, they often don’t know what to expect or what options are available, especially when their doctors are reluctant to answer questions.”

Still reeling from the diagnosis of breast cancer, a woman is immediately faced with a baffling and rapidly changing array of medical options. A newcomer to group acquires a new vocabulary, much of it enigmatic acronyms: LCIS, T-cell count, NMR, metastasis, S-phase fraction, CEA, estrogen-receptorpositive or negative, TRAM flap, CMF and CAF, hyperplasia.

Because fear of the unknown is one of the toughest obstacles cancer warriors must face, members use “show and tell” to demonstrate what the results of their surgeries actually look like, says Sandy Quinn, group facilitator and breast cancer survivor.

Women then have firsthand knowledge to make their own decisions about lumpectomies, mastectomies or reconstruction.

“None of us can give medical advice,” says Quinn. “But we can tell you what our own experiences have been. When I was told I had to have a mastectomy, I had no clue what one looked like. I had a friend who was one step ahead of me, so I could see hers and ask her what it was like. That was so reassuring.”

No matter how great the relief that the cancer is arrested, the loss of a breast is a terrible shock for every woman. Fortunately, there is a growing number of choices to somewhat compensate for that loss: the TRAM flap, implants, prosthetics and bra forms-or acceptance of the body with one breast or none.

Kerri, a single parent and a teacher, has had two mastectomies. With the last one, she opted for a TRAM flap, reconstruction from the patient’s abdominal tissue, usually performed at the time of the mastectomy. In retrospect, she wishes she had waited for the reconstruction. She says the TRAM flap “just doesn’t feel right. It doesn’t feel like me.”

It is important to note that 85 percent of cancer recurrence takes place in the first 18 months and that scar tissue from reconstruction often blocks the detection of recurrence.

Many women mistakenly believe that by having reconstruction immediately after the removal of a breast they can skip a step in their reaction to the loss. Or they may think their sexual partners may not be able to handle it. But it is more likely to be healing for both partners, according to Taft, for women to allow their partners to have the same human reaction to the loss, to the different body.

Kerri’s personal philosophy has evolved over the course of her 2—year bout with cancer. “If they don’t like me with one boob, tough.”

The discussion in support groups is not always about cancer, but cancer is always an integral part of whatever is being said. There is a lot of talk (and often laughter) about “normal life”: work, care of appearance and fitness, environmental concerns and family. And because chemotherapy often forces women into menopause, cancer survivors need to share information about their sexuality.

Great strides are being made in the fight against breast cancer. Emotional support is a vital element in winning the battle. Support groups are also available for the cancer patient’s partner, family and friends who cope with the enormous emotional, physical and financial responsibilities of caregiving.

For information about ongoing support groups in the Inland Northwest, contact the American Cancer Society at 326-5802, Spokane Cancer Patient Care at 456-0446 or Sacred Heart Cancer Research Center at 455-5490.

ILLUSTRATION: Staff illustration by Molly Quinn

MEMO: Kristen Birchett, a former resident of Spokane, is now a writer in Langley, Wash. She thanks all the support group members who contributed to this article, even if they were not individually named.

This sidebar appeared with the story: LEARNING THE ROPES Women who participate in breast cancer groups get more than support from one another. For example, Mary Ann learned how to relieve the pressure of lymphedema, a painful swelling, from other women in her support group who had experienced the condition. “There are also many things you’re never told about that may seem relatively insignificant, like about your fingernails coming off after chemo,” says Cathy, another local support group member. “We call each other and say, ‘This is happening, is it normal?”’ Support groups also dispel misinformation. “There’s a myth that cancers don’t hurt and that’s not true,” says Sandy Quinn. “Mine hurt like hell. Many women in support groups will validate that reality. Doctors and researchers also deny there’s such a thing as ‘chemo brain’ (confusion or memory lapses as a side effect of chemotherapy). But everyone who’s been through chemo will tell you there most certainly is.”