After Cancer: What Nobody Talks About

As the daughter and granddaughter of breast cancer survivors, Amy Brenner thought she knew what to expect when she was diagnosed with an invasive tumor four years ago. First came a double mastectomy and reconstructive surgery, and then chemotherapy. Treatment was difficult, but what she didn't know was that the real struggle wouldn't begin until after her breast cancer was gone.

"I feel disabled," says Brenner, 47, an academic dean's assistant in Willow Grove, Pennsylvania. She's still carrying the 40 pounds she gained during chemo and treatment with tamoxifen. And now she feels itches under her arm she can't relieve (likely related to her extensive surgery) and has developed lymphedema, a condition that causes her right arm to swell uncomfortably. But the worst part for Brenner has been coping with a shattered confidence in her body: "It's been four years, and I'm still startled whenever I look in a mirror—even when I'm clothed," she says.

You might think that experiences like Brenner's are rare—after all, when was the last time you heard that surviving breast cancer was anything but a good thing? But research suggests that as many as a third to half of all survivors have one or more lingering problems after their treatment is completed. It's a big issue: There are more than 2 million survivors in America alone.

For decades, though, these concerns have been minimized, often because women didn't discuss them. "Many women have a certain fatalism after cancer and tell themselves they can put up with anything as long as they're cancer-free," says Michael H. Levy, M.D., director of pain management at Fox Chase Cancer Center in Philadelphia.

Oncologists and surgeons, whose job it is to eradicate the disease, often don't concentrate on the aftereffects of treatment. "Oncologists focus on the acute effects of therapy and may not give as much attention as they should to the long-term effects," says Charles L. Shapiro, M.D., director of breast medical oncology at the Arthur G. James Cancer Hospital at Ohio State University in Columbus. That lack of attention may partly explain why treatment for the problems can be hard to find.

But with five-year survival rates reaching nearly 90 percent, women are growing more vocal about what happens after breast cancer. For many, the question is no longer "Will I live?" but "Will I live well?" The answer is different for everyone, but when women know what to expect, the chances of a yes will be all the better. Below, survivors and physicians reveal five surprising obstacles women may face long after their treatment is over.

Pain that persists

Discomfort is a given after any surgery. But some women who undergo mastectomies experience moderate to severe pain around the chest, in the armpit and along the inner arm on the side of the surgery, says Dr. Levy. It may strike immediately or up to two years later. "The nerves often go into shock when they're handled" during the surgery, he says. "But when they wake up they're hypersensitive. Patients say the pain feels cold, hot or even wet, or like pins and needles." One woman described it as charcoal briquettes in her armpits.

"I'll feel an itch under my arm but can't get relief when I scratch," Brenner says. "My body sends signals I can no longer translate." To rebuild her breasts, Brenner had TRAM flap surgery, which involves using skin, fat tissue, and muscle from the back or belly to create new breasts. Her misplaced sensations may be caused by nerves that were affected during the procedure.

"I'll feel an itch under my arm but can't get relief when I scratch. My body sends signals I can no longer translate," says one survivor.

Bonnie Shaw's pain wasn't misplaced, just excruciating. Doctors told her it would go away, but it never did. Two years after her mastectomy, the soreness under her right arm and across her chest endured, even as its character shifted day by day. "Sometimes it was a shooting pain, sometimes an ache," says Shaw, 56, a computer analyst in Gilbertsville, Pennsylvania. "But it was there all the time." Over-the-counter painkillers provided virtually no relief; acupuncture made it worse, but at least the acupuncturist referred her to Dr. Levy, who finally was able to help.

For the past six years, Dr. Levy has kept Shaw's pain under control with Neurontin, an antiseizure medication, and desipramine, an antidepressant. Such medicines have been used to control pain caused by nerve damage in diabetics. Standard painkillers like Percocet, OxyContin and Tylenol with codeine also work for some patients, but these opioids can dull the brain along with the pain and don't always ease burning, Dr. Levy says. His advice: Seek a pain-management specialist, who will be most likely to find an effective therapy.