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CancerLynx - we prowl the net
October 10, 2005

Solving the Mystery - Post Breast Therapy Pain Syndrome
Heather Stringer

Christine Miaskowski, RN, PhD, FAAN, pain clinic nurse, was perplexed. Her patient had survived breast cancer but was not happy. In fact, the woman was in so much pain she had bought a gun to kill herself if the pain specialists could not help her.

Miaskowski learned that her patient had been diagnosed with breast cancer five years earlier. As a result, the woman had undergone a mastectomy, as well as an axillary node dissection. However, not long after the surgeries, she began having the sensation of pins sticking into her chest — and the pain didn't subside. To avoid the excruciating pain she felt when she wore clothes, she would walk around her house naked. The random pain felt like a jolt of electricity that coursed through her body.

The patient had seen a slew of doctors, and each one told her the same story: The incision from the surgery had healed and she shouldn't be feeling pain. Miaskowski's team helped the woman to some degree with pain medications and physical therapy, but Miaskowski was determined to learn more about the mysterious disabling condition.

PBTPS study
This patient was suffering from post breast therapy pain syndrome (PBTPS). Roughly 15 to 30% of women develop some form of this condition after a modified radical mastectomy with axillary lymph node dissection, and a smaller percentage can develop the syndrome after less invasive breast cancer therapies such as lumpectomy and radiation therapy. Yet it's common for these women to find little sympathy or knowledge of the subject when they talk to their oncologists, radiation therapists, primary care doctors, or surgeons.

The condition remains puzzling to doctors and nurses for several reasons. First, the pain can develop several weeks or even years after surgery. Second, the condition is unpredictable. Some women never experience it, while others are so sensitive that it hurts to type on a keyboard or wear clothing.

To shed light on these questions, Miaskowski, now a professor in the Department of Physiological Nursing at University of California, San Francisco School of Nursing, launched a study in 2004 in hopes of pinpointing who is at risk of PBTPS, what percentage of women experience it, and how much function these women lose. So far, the study has enrolled 100 women of the needed 450, and Miaskowski will follow them monthly for the first six months and then every other month for the following year. She's tracking patients who have had a variety of treatment combinations, including lumpectomies, axillary node dissections, mastectomies, radiation, and chemotherapy. She's hoping to discover the role of radiation and chemotherapy with regard to pain, the prevalence of lymphedema, and whether age, body size, and genetic markers can help her predict who will be at risk of the pain.

"If we can figure out who is at risk for this and how big the problem is, we can get this information out to the people who need to know. Then we might be able to think of preventive therapies."

For those who experience the pain, the cause seems to be damage done to the nerves during surgery. As a result, the nerve sites stop transmitting signals normally, which can result in symptoms ranging from tingling and burning to a shock-like or stabbing pain. Each woman's response to this nerve damage is unique. The pain ranges from mild to severe and short-term to chronic.

Chronic pain
Only a small percentage of women experience chronic, severe pain, and Sarah Schorr, RN, was one of the women who fell into this category. She was diagnosed with inflammatory breast cancer in 1999 at age 41. After chemotherapy, a modified radical mastectomy (doctors removed her left breast, as well as 18 lymph nodes under her left arm), and radiation treatment, she knew she was lucky to survive this aggressive form of breast cancer.

Six weeks after the surgery, she started having a swollen left arm caused by lymphedema, severe neck pain, and an intense burning sensation around her mastectomy scar. For six months, she couldn't wear a bra or swim, and had difficulty sleeping.

"Even my surgeon had no idea what was going on," she says. He seemed skeptical about the existence of her pain, and referred her to a pain specialist, who gave her local anesthetic injections around the scar that were extremely painful themselves. After the third round of injections, Schorr finally felt some relief. She had injections every six to eight weeks for six months, started doing physical therapy and massage around the scars, and began taking a low-dose antidepressant to alleviate the chronic pain.

"It was very difficult for me," admits Schorr, who worked as an office manager for a medical practice throughout her cancer treatments to distract herself from the pain. "I was just trying to deal with the fact that I had cancer, then I had all the treatment, and then I developed these long-term side effects."

Schorr says her pain has decreased from 12 out of 10 (on a scale of one to 10) to 4 out of 10, and she still lives with a moderate level of discomfort. But this doesn't stop her from enjoying her work and life. "I'm one of the lucky ones [to survive IBC]," she says. "Every day is a gift. I didn't think I would be here."

Pain therapy
Nurses such as Schorr are eager to pass on the message that there is a way to decrease the pain for women who have this syndrome. Marilee Donovan, RN, PhD, a clinical nurse specialist at Kaiser Permanente Northwest Pain Management Clinic in Portland, Ore., works with patients to treat this kind of pain.

Donovan saw her first PBTPS patient in 1998. The woman was 45, and her pain had started seven years after her mastectomy. Her arm seemed like it was permanently frozen across her chest because she had held it in that position for so long to prevent anything from touching her highly sensitive mastectomy scar. "The doctors didn't understand what was happening," Donovan says. "I hit the literature to see if anyone had identified this. I found out that that it's quite common, but often just ignored."

In Donovan's clinic, the patients with PBTPS join a group of 25 patients who are all living with severe pain. In the weekly group, a multi-disciplinary team teaches the patients about four categories of pain therapy, and the patients experiment to find which combinations best reduce their pain.

The first category is medication, such as injections, local anesthetics, anti-depressants, and drugs used to treat nerve pain such as gabapentin (Neurontin). Next, the patients are exposed to cognitive and behavioral therapies such as relaxation, positive self-talk, and pacing.

PBTPS patients can easily fall into negative self-talk such as "I wish I didn't have this mastectomy pain, and the cancer is probably going to come back and I may be dying," Donovan says. But the Kaiser team encourages the women to think about their situation this way: This is an annoyance, and I am going to learn how to overcome this challenge.

Pacing is one of the most difficult things to teach patients, Donovan says. When pain patients are feeling good, they are tempted to try to accomplish everything they didn't do when they were more uncomfortable, but the consequence of this can be a relapse into days of more severe pain. She shows them how to pay attention to how long they can do a task without hurting, and then take a break. It may take longer to do the dishes this way, for example, but in the long run this can be a key way to minimize the pain. The third category of pain management includes physical therapies such as exercises and stretching, or alternating between applications of hot and cold. The fourth and final category is complementary/alternative medicine such as energy work, massage, acupuncture, or vitamins.

In general, Donovan has found that most of her patients decrease their pain by about three points on a scale of 1 to 10. Even though pain specialists are often only able to reduce the severity of chronic pain, not eliminate it, more and more women with a new diagnosis of breast cancer are already avoiding PBTPS altogether, says Robert Wascher, MD, an oncologic surgeon and clinical associate professor at the Cancer Research Center of Hawaii, University of Hawaii in Honolulu.

Surgical choices
Surgeons can now perform a technique called sentinel lymph node biopsy (SLNB) to determine whether a patient's breast cancer has spread to the lymph nodes. Instead of doing a full lymph node dissection, in which up to 20 nodes are removed, the surgeon removes only one or two sentinel lymph nodes, which are identified by injecting dye or a radioactive tracer near the tumor area. SLNB is only appropriate in patients with smaller tumors. Only a small percentage of patients will have a positive sentinel node. In this case, a full dissection must be done, but the majority of patients can avoid the more invasive procedure, which is often linked to PBTPS.

Today, women are often given the option of breast conservation if it is safe for the patient's stage of cancer. Many patients choose lumpectomy combined with radiation therapy rather than a modified radical mastectomy. This also cuts down on the number of cases of the pain syndrome, Wascher says. He suggests that as many as 90% of breast cancer survivors will avoid PBTPS as a result of these newer treatments.

Despite these hopeful developments, Deborah Hamolsky, RN, MS, is driven to discovering how to further reduce the suffering of women who live with the condition. Hamolsky, an advanced practice nurse at UCSF's Breast Care Center, is working with Miaskowski on her study of women with PBTPS.

"When we don't know the best thing to do for a patient, that bothers me," she says. "Any amount of suffering is too much, and I like being able to work on a study that will answer some of the questions I can't currently answer."

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Reprinted by permission
Heather Stringer is a freelance writer for NurseWeek. To comment on this story, send e-mail to

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