In August 2001, Jackie Thomas was diagnosed with breast cancer and quickly had surgery and started chemotherapy. Her husband, Michael, a Lutheran minister with a background as a chaplain at the University of Nebraska Medical Center in Omaha found that his experience counseling others through illness hadn't prepared him for this. "It's a very difficult position to be in. You're used to being in control and you're not in control. You want to come up with a solution and there is no solution."
When a woman is diagnosed with breast cancer, it can blindside the men who love her - husbands, boyfriends, fathers, sons. It's not just a "woman's issue," say the men who've been affected. But many of them know little about the disease itself and find themselves at a loss as to how to help the women they love cope emotionally (much less cope themselves).
What's Happening to Her?
"Breast cancer is one of those diseases where there isn't a simple formula for treatment," says Judy Perotti, director of patient services for Y-ME, a national breast cancer organization. "Treatment is very individualized based on the woman's age, the size of the tumor, whether it's in the lymph nodes, and whether it's estrogen-receptor positive. Those are pieces of information that are critical to know and understand."
Y-ME offers a brochure called Understanding Your Breast Cancer Pathology Report that can help decipher the "medicalese" behind your wife's or mother's hospital chart. "People should know that they have to be active in the treatment decisions, because there isn't a formula," Perotti says.
Still, there are some things you can expect. "Most younger women with invasive breast cancer get chemotherapy. That takes at least three months, sometimes more," says Anne O'Connor, RN, MSN, clinical nurse coordinator at the Lombardi Cancer Center at Georgetown University.
"Every three weeks, she'll get chemo for an hour to four hours. For the next several days, she'll be taking a lot of medication and not feeling well. After that, she'll probably be feeling more like herself, but she'll still be fatigued, and the effects are cumulative."
There will be other changes. "If she has radiation therapy, just going for it is fatiguing, since the treatment is usually Monday through Friday for six weeks. There can be skin changes and sensitivity," O'Connor says. "There will be changes to the breast. And there will be emotional changes."
What Can I Do?
For many men, the biggest challenge is dealing with the fact that they can't "fix" this. "They feel helpless. It's a horrible feeling," Perotti says. "It's very difficult to stand by and watch as the person who's dearest to you in the whole world is diagnosed with a life-threatening disease and goes through treatments that may be very difficult. A lot of men want to fix things, and they're very frustrated when it becomes evident very quickly that they can't."
Instead, "Just listen," Perotti advises. "That can go contrary to instinct. She's talking about her feelings, treatment options, whatever, and he's probably going to jump to problem-solving pretty quickly. But there's tremendous value in just listening to someone. Then, what to say, if you've listened, will come naturally. Be empathetic with her feelings. Let her know that you recognize she's feeling very sad and very angry. If you're really struggling, just say 'I don't know what to say.'"
Marc Heyison, whose mother is a ten-year breast cancer survivor, and Steve Peck, who lost his wife to breast cancer, founded Men Against Breast Cancer. The organization provides resources for men who support women with breast cancer including "Partners in Survival" workshops and support tips on a wallet-sized card. "Men like to make lists of what they can do," Heyison says.
Among the card's pointers:
- Listen without judging.
- Be as open as possible. If you're afraid, say so. If you want to cry, cry.
- Go to medical appointments with her whenever you can. If you can't go, make sure someone else does so she's not alone.
- Make her hospital stays more comfortable - get her the books or videos she likes and put personal touches in the room.
- Take care of yourself so you can be there for your family.
Communication is vital, especially when couples deal with intimacy issues. "Some men may say, 'I don't know how to approach my wife. I don't know if it's okay to be sexual with her,'" Perotti says. "If a woman is going through chemo, there will be times when the last thing on her mind will be sex. But on the other hand, she may be thinking, 'I lost a breast and he lost interest.'"
Perotti advises men to talk openly with their partners about sexual needs. "If you tell her 'I feel very sexual toward you, but I'm concerned that you might not feel that way. You might be tired or in pain.' Then she can say 'Whew! I really don't feel like having sex right now, but it's so important to know you want to, and you still want me.' That's very reassuring."
Y-ME offers a "Men's Match" program, pairing men with others who've gone through the same experience (1-800-221-2141), and it offers a guide, "When the Woman You Love Has Breast Cancer."
The Long Haul
Breast cancer, even if it's successfully treated, lingers in a woman's life for a long time. "Women often say that even years later, the cancer comes up in their mind a lot. They'll think about anniversaries of when they were diagnosed or when they had surgery" says O'Connor. "That's hard for many partners to think about. He has to be patient with that, acknowledge it, and not just expect it to be 'over.' Don't say 'get over it!'"
Mike Thomas agrees. "That's a very tough reality, because Jackie is a cancer survivor, but it will always be with her, and with us. That's something that she will live with for the rest of her life, and I have to understand that."