In Sickness and in Health : When Breast Cancer Hits, Men Also Deal With Surviving--and Coping

To the mourners at her father’s funeral, Lynn Barlow was a wonder.

Although she had lost both her father and her breast to cancer in a span of three months, she was bearing up without any signs of strain.

Her doctor had told her husband, Rich, that the stoicism might crack. But as the months wore on, there was no sign of it.

“I was beginning to be confident we weren’t going to have a low low--a bottom out,” he said. “But when it hit, it was like a bomb went off.”

Rich came home one day, eight months after Lynn’s mastectomy in 1986, to what looked like ground zero. Lynn had emptied her closet and strewn her clothes throughout the house. She was huddled on their bed, sobbing uncontrollably. It took a tranquilizer to calm her enough so she could speak, he said.

“She said: ‘I’m not a whole person. How can you love me? Why do you love me?’ ”

In the months that followed, the Barlows, who live in the new Orange County development Aliso Viejo, struggled to keep their marriage intact. Like other couples, they came to realize that breast cancer not only invades a woman’s body and endangers her life. The disease also can destroy a woman’s self-image and her confidence. And it can strain a relationship to the breakup point.

Although it is the woman who has cancer, her partner also faces some of its effects. He is afraid she will die. He’s unsure how to respond to her range of emotions as she copes with her illness. He feels compelled to be stalwart and rock-ribbed, even when he is terrified. And, finally, he has to confront his feelings about the woman’s body, transformed by surgery and chemotherapy.

“It’s hell for her, but him too,” said Ron Pepin, 65, of Anaheim. His wife, Ginny, 65, had a mastectomy in 1988 and reconstructive surgery a year later. “So many things happen to a woman where the guy doesn’t understand what the hell to do. It’s confusion, frustration and fear. It’s a lack of knowledge and understanding. All that together, you’ve got a big problem.”

That big problem led to the formation of a men’s support group at the Breast Care Center in Orange, one in a growing number of facilities dedicated to helping couples. Two men whose wives had been treated there saw the benefits of the patient support group and asked if one could be started for men, said Barbara Scott, the center’s patient educator.

The groups began getting together in the fall of 1992. Once a week, for a month or so, women whose cancer has been diagnosed in the past six months come to the center with their partners. The couples talk together for about a half-hour, then split into men’s and women’s sessions for an hour or more. Then the couples gather again to summarize the evening’s discussions. When the formal sessions have concluded, couples can exchange phone numbers and continue to meet if they wish, Scott said.

“The thing I see most is a fear of saying what you’re feeling to that other person,” Scott said. “The woman is so busy saying, ‘I’m fine, fine, I’m going to be fine,’ that she doesn’t get to say, ‘I’m really scared.’

“And the man is so busy saying, ‘You’ll be fine,’ that he doesn’t have the opportunity to say he’s scared, too. Here they can come to a safe place and say their deepest feelings in a supportive environment.”

Dr. John West, surgical director of the center, said he urges men to go to the meetings.

“If they don’t do it, I lean on them a little bit,” he said. “I’m now convinced it’s part of the healing. The males do better, the relationship does better, and maybe there’s a survival-rate improvement.”

Although men are not known for pouring out their feelings to strangers, the group setting does work, said Craig Nattkemper, a psychologist who leads the men’s sessions. Even if a man doesn’t talk, he at least learns that other couples face the same difficulties.

Men such as Pete Wesselink, 48, of Orange attend sessions to tell the group what they and their wives went through. Susan Wesselink, 47, had a bilateral mastectomy, rigorous chemotherapy and reconstructive surgery in 1990.

“It’s so valuable for the guys,” he said. “It gives them the chance to see how other people have dealt with this thing. If a guy asks, ‘What did you do when her hair fell out?’ or “How was your love life and did it bother you that your wife didn’t have a breast?’ you give them the benefit of your experience. That’s been comforting to people.”

The groups nearly always talk about what it means for a couple when a woman loses her breast to cancer. Women and men who have participated in the groups and talked to couples individually agree: It’s more often the women who think losing a breast makes them less desirable.

“It’s almost a universal response, that when the woman asks about what the loss of a breast means, the man says, ‘Hey, it doesn’t matter,’ ” Ron Pepin said. “Most women don’t buy it.”

Pete Wesselink said he understands why that might be.

“If you watch TV or go to the movies, it’s fairly obvious that it’s the stereotype that’s presented: Men are attracted to women because of their breasts,” he said. “And it’s not just breasts, but the bigger the better.”

Wesselink said most men aren’t as fixated as the media make them out to be.

“It’s a factor, but you learn to deal with it. You come to the realization, when you face a life-threatening illness, that there are more important things.”

Since Lynn Barlow’s first surgery eight years ago, Rich Barlow, 51, has talked with some men who don’t share that opinion.

“It’s almost like they’re putting their wife on display . . . and to them, it would be like displaying a diamond: You wouldn’t want to display one with a flaw,” he said. “To me, it’s very shallow. Those two pieces of flesh in the front of a lady have nothing to do with her brain or her heart.”

But even when a man sincerely tells a woman that the loss of a breast doesn’t matter, it can take a year or longer for a woman to believe it, Nattkemper said.

It was extremely difficult for Marie Lussenden, 58, of Anaheim. She had a breast removed in 1991 and resisted reconstructive surgery because she was “so petrified of dying” that she couldn’t even think about it. In chemotherapy, she lost every strand of her body hair, including eyelashes.

“Seeing your body with only one breast is bad enough,” she said. “Losing your hair is another psychological blow.”

To top things off, she gained 40 pounds.

Her husband, Dale, saw her through all of it. Her voice still catches as she praises him as “the biggest gift in my life.”

“He would say wonderful things: ‘I didn’t marry you for your breast. I don’t care if you weigh 500 pounds. I love the Marie inside.’ But to me, I was hideous,” she said.

“All I could do was put my arms around her and hold her,” said Dale, 50. “Sometimes we said nothing. I guess I treated her the way I would have wanted to be treated.”

The couple still is coping with the changes cancer has wrought. Marie said that tamoxifen, the drug she takes to ward off the recurrence of breast cancer, has reduced her sex drive. And she fights the feeling that if she hates her body, her husband must, too.

“But things are getting better,” she said.

Not every relationship survives the buffeting that breast cancer inflicts. Ron Pepin knows of one recent situation in which a woman’s fiance left her after hearing that her cancer had recurred.

In such situations, Pete Wesselink said, “you want to take the guy in the other room and knock his block off. But you can’t force someone to care for someone. In my opinion, something was wrong before.’

Susan Wesselink agreed.

“They say that relationships that aren’t strong have a difficult time surviving adversity,” she said. “Ours was good to begin with, and one of the gifts of cancer was that it made it stronger.”

She calls her husband “Prince Pete” for his approach to her illness. He shared nearly every step of treatment with her--from reading her books on healing and attending all her chemotherapy sessions to shaving her head so she wouldn’t have to watch the hair fall out in clumps every day.

“We both stood there in the bathroom, crying, cutting hair,” he said.

Ginny Pepin said she and Ron also found that her illness brought them closer.

“In 40 years of marriage, although you get along, you sort of take each other for granted,” she said. “When this happens, it makes you realize how special life is and how much you appreciate one another.”

The Barlows couldn’t agree more. Lynn’s illness tested their marriage, they said, but it also made them see the depth of their commitment. Lynn, 48, who had her other breast removed in 1987 as a precaution and then underwent reconstructive surgery for both breasts, finally realized that Rich meant it when he said he loved her for the heart inside her chest, not for what was in front of it.

“Aren’t I lucky?” Lynn asked.

“I’m the lucky one,” Rich replied. “You came around.”

Where to Get Help

* As part of its Reach to Recovery program, the American Cancer Society can put men in touch with other men whose wives have survived breast cancer. In addition, its Man to Man program provides one-on-one peer support, usually via the telephone, to men whose mates are newly discovered to have the disease. Call (800) 227-2345 for the number of an ACS office near you.

* The Y-Me National Organization for Breast Cancer Information and Support has a booklet, “When the Woman You Love Has Breast Cancer.” Single copies are free and available by writing the organization at Y-Me, 212 W. Van Buren St., Chicago, Ill. 60607-3908.