Now 57, Schneider says she has tried pain medication, exercise, and other nondrug treatments to get relief, but nothing has been completely effective.
"Some days it's not so bad, but on other days it's really terrible," she tells WebMD. "It's a constant burning or pulling sensation. Sometimes I don't even want to put a bra on because the pain is so intense."
Almost half of surveyed survivors reported experiencing pain related to their surgery two to three years after treatment in a study published this week in the Journal of the American Medical Association.
Younger patients were more likely than older ones to have chronic pain. And patients who, like Schneider, had multiple lymph nodes removed in a procedure known as axillary node dissection were most at risk.
Researchers from the University of Copenhagen recruited 3,253 women who had breast cancer surgery for the study.
Roughly two years after treatment, the women answered questionnaires designed to explore the prevalence and severity of pain.
The survey revealed that:
- 47% of the former patients reported pain in one or more areas.
- 52% of those reporting pain characterized the pain as severe or moderate, and 48% reported light pain.
- Among women reporting severe pain, 77% had pain every day.
- 58% of the women reported sensory disturbances such as numbness, tingling, or a "pins and needles" feeling.
Younger Cancer Patients Most at Risk
Women under 40 were more than three times more likely to report persistent pain than women in their 60s.
Kelly McClusky, 38, and Joya Delgado Harris, 36, both had double mastectomies within the past two years.
"It's not constant pain, but it can be annoying and frustrating," McClusky tells WebMD. "Sometimes it's a shooting pain and other times it's an itch that you can't get to."
Women in the study who had axillary lymph node dissection were almost twice as likely to have pain following surgery and five times as likely to have sensory disturbances than women who had sentinel node dissection, in which usually just one or a few of lymph nodes are removed to check for cancer instead of 10 or more.
The researchers conclude that the cause of most chronic pain following breast cancer treatment is injury to key nerves during surgery.
"We confirmed that nerve damage is a major contributor to chronic pain," study co-researcher Henrik Kehlet, MD, PhD, tells WebMD. "This emphasizes the need to find more delicate surgical techniques to avoid nerve damage."
Sentinel Node Dissection 'Easier on Patients'
Breast cancer specialist Loretta S. Loftus, MD, MBA, of H. Lee Moffitt Cancer Center in Tampa, Fla., tells WebMD that more and more surgeons are opting for sentinel node dissection because recovery time is much shorter and there is less chance of nerve damage.
"It is just much easier on patients," she says. "Women who have sentinel node dissection tend to be in and out of the hospital pretty quickly."
Loftus says doctors often fail to ask their patients about pain and patients often don't report it.
"At Moffitt, in our clinic, it's routine to ask every patient if they are experiencing pain when they enter the exam room," she says.
When facing her own decisions about treatment, Schneider was determined to be as aggressive as possible, in part because her mother died of the disease at the age of 61.
But she now regrets having the axillary procedure instead of the less invasive sentinel dissection, which was an option for her.
"I would tell anyone to ask a lot of questions and learn all they can if axillary dissection is suggested," she says.