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Men get help coping with mate's breast cancer

THE BALTIMORE SUN

After his wife, Theresa, had a modified mastectomy in September 1993, Tom Barbieri wanted to talk to someone but just didn't know where to turn.

Out of frustration, he would go down to his workshop and break a few things with a hammer.

Don Bankard considered talking to his father when his wife, Mary Jo, had a mastectomy in 1983. But he didn't think the older man would understand.

Now, Mr. Barbieri and Mr. Bankard talk to each other -- and their wives -- at a monthly support group that Carroll County General Hospital sponsors for couples coping with breast cancer. The group, formed last spring, is the only one in the Baltimore area to deal with issues faced by husbands and boyfriends of women with breast cancer.

"Sometimes men are more willing to sit and talk to other men," Mr. Barbieri said. "We'll talk about closeness, physical intimacy or just daily living.

"It happened to her," he said of his wife's breast cancer. "But it's a shared experience."

Members say one of the most valuable aspects of the support group is knowning that other men share their doubts and anxieties.

"I know what most of them are going through," Mr. Bankard said. "The experience of looking at a blank chest is a shock, to say the least. You've been married for a while, and all of a sudden you're faced with a new person."

Although it's been more than a decade since Mrs. Bankard's surgery, the Bankards say they've found the group helpful.

"I'm understanding a lot of the problems we went through as husband and wife," said Mr. Bankard. "A group like this would have helped us get through the past 11 years, especially the first year after the surgery."

Men in the group say it's easier to discuss their feelings of guilt, fear, anger and helplessness associated with their wives' cancer with other men who are experiencing the same emotions. In Mrs. Bankard's opinion, the group is long overdue.

"After all these years, I never asked him if he needed anybody to talk to," she said. "It seemed that everything was centered on me and what it took to get me through."

Dr. John E. Steers, a Westminster surgeon, decided to organize a support group for couples because he saw so many patients come to his office alone, distraught over how their surgeries and cancer treatments were affecting their relationships.

"I've seen marriages absolutely blow apart, and I got to thinking there's nowhere for these men to interact with other men and get their fears out on the table," Dr. Steers said.

In the 10 months since the group formed, eight to 10 couples have regularly turned out for the monthly meetings, usually to hear a guest speak or discussions of topics such as new cancer drugs, reconstructive surgery or other nonsurgical ways for a woman to improve her appearance after a mastectomy.

After the presentations, the men and women form separate discussion groups and come together again later to conclude the meeting.

Groups such as the one at the Carroll hospital are becoming more common, said Michelle Melin, the national hot-line administrator with Y-ME, a Chicago organization that provides information and referral services to breast cancer patients.

"We're hearing about a lot of groups springing up across the country that are specifically for men or men and their wives," Ms. Melin said.

Recognition that a woman's breast cancer also takes a emotional and psychological toll on her husband or boyfriend led Y-ME to publish a free booklet last December called, "When the Woman You Love Has Breast Cancer."

The "phenomenal" response to the pamphlet persuaded the organization to open its national breast cancer hot line to men in October. Each caller is matched with a peer counselor who has a similar experience in dealing with breast cancer.

"Their primary concern is, 'Is she going to die?' " Ms. Melin said.

According to the most recent data from the National Cancer Institute, 63 percent of the women diagnosed with breast cancer survive 10 years, and 56 percent survive 15 years. The five-year survival rate for localized breast cancer is 94 percent.

After learning that having breast cancer doesn't mean certain and immediate death, Ms. Melin said, men usually voice other concerns.

"They [men] want to know, 'How can I support her? What does she need from me? What do I have to understand about the disease not to respond in a negative way?' " Ms. Melin said.

Hot-line callers frequently have concerns about the the effect of breast cancer on relationships and intimacy.

"It's amazing the number of men who call and say, 'My wife told me to get a girlfriend,' " Ms. Melin said. "So these are real difficult issues they're dealing with."

Patti Wilcox, a nurse practitioner at the Johns Hopkins Breast Center, wonders whether the growing attention to how breast cancer affects men and couples indicates a shift in attitudes about communication between men and women.

"I would hope that people are finding their lives together worth some significant effort to communicate instead of bottling it up," Ms. Wilcox said.

"Clearly, surviving breast cancer is more than just living."

Social worker Bob Hollander, who leads the men's discussions for the Carroll County General group, said the group focuses on improving communication between the couples.

Men tend to repress their feelings and emotions more than women, Mr. Hollander said. And communication becomes even more difficult when the feelings are connected to the loss of a spouse's breast.

Splitting the group into men's and women's discussion sections helped some of the men to open up and confront issues they had avoided.

"A lot of the men are saying things in the men's group that they'd never shared with their wives -- their feelings about surgery and rekindling a physical relationship," Mr. Hollander said.

"It's important to realize these feelings aren't good or bad, they just are. What's good or bad is how you respond to them and how you present them to your partner."

Many of the problems couples face after breast cancer involve resuming physical intimacy, he said.

"Women may feel a loss of femininity, and men have fears about how they will react," he said, but repressing those feelings frequently leads to isolation and depression on the man's part, which the woman may interpret as rejection.

The men in the group also discuss their own feelings of inadequacy and helplessness related to their wives' breast cancer and treatment. Mr. Barbieri said a common mind-set among men is, "I'm the man of the house, and I can't really show her how it's affecting me."

At a recent support group meeting, he explained how draining fluid from his wife's incision after her operation helped him to come to terms with the surgery.

"It brings a level of acceptance when you have to help," he said. "A lot of men would probably say, 'I could never do that.' But when it's someone you love, you'd be amazed at what you can do."

WHERE TO CALL

If you'd like to know more about Carroll County General Hospital's breast-cancer support group, call 876-3000, Ext. 6841.

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