Women worry about a lot — their children, relationships, jobs, health, hair and so on. But new research out of Mount Sinai Medical Center in New York has found that some women are worrying about something rather unexpected: prostate cancer.
The wives and partners of men with prostate cancer actually worry more about the cancer’s recurrence than the men themselves, according to a study presented at a recent meeting of the Society of Behavioral Medicine in Montreal.
The study, which focused on 96 men and their long-term spouses or girlfriends, found that at the time of prostate cancer diagnosis, male patients described themselves as “moderately worried” about the chance of their disease recurring, while female spouses and partners described themselves as “very much” worried.
After treatment, the men’s worry went down. The spouses’, on the other hand, stuck around.
No walking away from worry
“What surprised me is that after treatment, the patients’ worry went down in an even slope,” said Dr. Michael Diefenbach, associate professor of urology and oncological sciences at Mount Sinai and a lead researcher on the study. “At 12 months, they were really only slightly worried about recurrence. But for the spouse, the decline was not as pronounced. It seemed to flatten out a little bit, but there is this continued moderate worry about cancer recurring.”
Ace Bailey, a 54-year-old art and cultural tour company owner from Scottsdale, Ariz., is one of those worried women. Her husband of 28 years was diagnosed with prostate cancer in 2006 and underwent hormone therapy treatment. After that, he “walked away” from his cancer and hasn’t even gone back for checkups.
“He won’t discuss it, it’s a non-topic,” she said. “And it’s worrisome. On the one hand, I understand what he’s saying and on the other, if this goes full-blown and becomes something big, it would make me very angry. It can be very frustrating. It’s like ‘You’re killing me.’”
Feeling frustrated and out of control may be part of the reason partners seem to worry more than patients, said Diefenbach.
“If you are a patient, then you do something through your treatment, you have control,” he said. “You think, ‘I’ve been treated, I’ve done everything I can do and hopefully, it’s gone now’. But the partners don’t go through the actual treatment. There’s less of a perceived control and that, in my mind, seems to be connected with this continued worry.”
Different attitudes about health may be another factor contributing to the “anxiety-gap.”
“Women know more about health than men do, they’re used to dealing with the medical system, they’re the gatekeeper for the family’s health,” said Diefenbach. “They oftentimes make the appointment for their husband and tell them to go to the doctor and get screened. They’re much more intimately involved with health and seem to think about it more than men do.”
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Men, on the other hand, often take a less active role, which can be problematic when it comes to prostate cancer since it requires a considerable amount of personal decision-making with regard to treatment.
“I think a lot of men, particularly with prostate cancer, will say, ‘Tell me what to do, doc, and I’ll do it,’” says Diefenbach. “They’re much more likely to follow a physician’s advice, which reinforces that notion that they want to have an action plan, follow it and be done with it.”
Victoria Hallerman, author of “How We Survived Prostate Cancer: What We Did and What We Should Have Done,” said that the treatment option her husband chose when he was diagnosed with prostate cancer in 2002 still troubles her.
“Many men pick the first method offered to them,” said the 61-year-old author, poet and health activist, who lives in Staten Island, N.Y. “When my husband got the news, I was away on a trip and when I got back, he had his mind made up and didn’t want to discuss it. But the wise thing to do is wait and do the research. I learned in retrospect that a healthy man in his mid 50s would normally have a prostatectomy [surgical removal of part or all of the prostate gland] because if it recurs, you can then do radiation. It's the second thing in your arsenal to throw at it. But we went right to the radiation and it was a brutal time. Neither one of us were prepared for the profound emotional changes that testosterone deprivation presents."
Hallerman, whose husband has been cancer-free since 2003, says she doesn’t just sit around and stew, though. In addition to writing a book about what it’s like to go through prostate cancer as a couple, she’s active in prostate cancer support groups and keeps up with new research and findings.
“I keep my ear to the ground and I’m always interested when someone comes to speak to the prostate group,” she says. “I take lots of notes. I want to be there with the knowledge just in case there is a recurrence. The funny thing is if I mention that to my husband he says, ‘I don’t want to hear about it.’ I guess we do fall into that category of the woman being concerned about recurrence and the man saying ‘Let’s move forward’.”
Cancer happens to the whole family
Diefenbach hopes that his recent findings will help health care providers move forward when it comes to dealing with partners and spouses of prostate cancer patients.
“There’s very little attention paid to the emotional reaction of the patient but less so for their spouses,” he says. “I think what this study suggests is that the clinician or health care providers need to pay attention to that. It’s been said that cancer is a disease of the family, but when you look at how it’s treated, it’s really just for the patient.”
Establishing an automatic referral system for prostate patients’ partners and spouses would be a great step, he says, as would providing a safe environment where couples can talk about the many emotional issues surrounding prostate cancer: recurrence worries, sexual dysfunction and potential urinary dysfunction.
A 2007 study by the University of Michigan offers additional weight to these recommendations, concluding that support programs “significantly improve” the physical and emotional quality of life, particularly for spouses.
Hallerman, who is currently a member of the prostate cancer support group Man to Man, says support has certainly helped her get through what can be a “troubling business.”
“Cancer happens to both people,” says the author, who’s been married 38 years. “The first time I really became aware of that, I was signing up on the American Cancer Society’s Web site and I realized that I was allowed to sign up as a cancer survivor. I actually burst into tears. Sometimes, you don’t really know you have a need until someone says, ‘Yes, you’re a survivor, too.’”
Diane Mapes is a Seattle freelance writer and author of "How to Date in a Post-Dating World ."
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