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Post Breast Therapy Pain Syndrome Handout
Robert Wascher, MD, FACS, Ernest Rosenbaum, MD, Alexandra Andrews, Charles M. Dollbaum,MD, PhD, Karen Ritchie, MD, Sarah Schorr, RN, BSN, Francine Manuel, RPT, Jean Chan, BA, MA, SEd, Richard Shapiro, MD
After Treatment & Talking To Your Medical Team About PBTPS
Suggestions for Discussing PBTPS With Your Medical Team
Post Breast Therapy Pain Syndrome (PBTPS) PDF Handouts
Post Breast Therapy Pain Syndrome (PBTPS) is a complex constellation of symptoms. PBTPS can be defined as persistent neuropathic pain, and is often associated with symptoms of numbness, dysesthesia, edema, and allodynia located in the chest wall, axilla, arm, or shoulder of the surgical side. The old term, Post-Mastectomy (after breast amputation) Syndrome, is not sufficiently descriptive with breast-preserving therapy. Recent research suggests that newer approaches to the surgical treatment and staging of breast cancer, such as sentinel lymph node biopsy (SLNB), may significantly decrease the incidence of PBTPS.
PBTPS may result from neuropathic changes associated with surgery, chemotherapy, radiation therapy, and hormonal therapy. Chemotherapy drugs commonly associated with peripheral neuropathy include vincristine, viblastine, vinorelbine, cisplatin, paclitaxel, docitaxel, carboplatin, oxaliplatin, cisplatin, etoposide, tenoposide, thalidomide, bortezomib and interferon. Any breast-associated surgery (e.g., mastectomy, lumpectomy, lymph node biopsy, breast implant placement, and breast augmentation or other types of breast reconstruction) may result in the development of PBTPS. Scar tissue that forms after surgery is not as elastic as healthy skin, and may entrap nerve fibers as the incision heals. Any healing complications such as an infection may further increase the risk of PBTPS. Abnormalities in the healing of divided sensory nerve fibers (e.g., neuromas) may also lead to chronic pain in or near incisions.
Chronic upper extremity swelling, or lymphedema, may also adversely affect breast cancer survivors with short-term or long-term discomfort, chronic pain, debility, and loss of function in the affected limb. Edema adds weight to the limb, causing a sensation of heaviness. Severe lymphedema may, in some cases, put pressure on major motor and sensory nerves causing varying degrees of paresthesia and paralysis. Lymphedema, which may occur in 5 to 15% of patients following breast cancer surgery, is a chronic problem that may lead to distress, pain, and loss of function, anxiety, as well as serving as a daily reminder of a patient's prior treatment for cancer. Another specific area of PBTPS-related functional impairment is the inability to comfortably use a computer which, in the Information Era, may result in significant professional and personal challenges to affected patients.
Complications of breast cancer therapy, and lymphedema and PBTPS in particular, can result in a significantly adverse impact on quality of life (QOL) for millions of breast cancer patients. Current standard clinical management approaches are often ad hoc in nature, in the absence of well-defined and evidence-based clinical practice guidelines. Chronic symptoms associated with breast cancer therapy often lead to daily challenges at home and at work, with attendant anxiety and depression for many patients.
In post-surgery follow-up visits, patients may report mild postoperative pain symptoms, however the symptoms of PBTPS, when it does arise, may not manifest as an ongoing chronic problem until 30 to 90 days after surgery, or in some cases, even many years later. Over 50% of patients diagnosed with PBTPS unexpectedly experience chronic pain and other serious sensory disturbances. They report increased pain with movement, leading to clinically significant arm and shoulder restriction of motion. PBTPS discomfort interferes with active daily living and sleep and impairs overall quality of life.
PBTPS remains under-reported, and when it occurs, it may be a debilitating repercussion of breast cancer therapy. Because PBTPS is not well understood by many physicians, breast cancer patients are often not advised about this risk prior to surgery, or the risk may be otherwise minimized. Clinical standard management approaches are not well delineated, resulting in considerable confusion and frustration for patients. Many patients are oftentimes advised to seek psychiatric care by well-intentioned physicians who are unfamiliar with PBTPS. In some patients, PBTPS may leads to fears of cancer recurrence, resulting in additional anxiety, and for some patients, depression.
PBTPS is best treated as early as possible, because it may become chronic and more resistant to effective treatment if diagnosis and initiation of therapy is delayed. The timely diagnosis and treatment of PBTPS requires that both physicians and patients have a clear understanding about this syndrome, and that appropriate referrals to experienced pain management specialists are made in a timely fashion.
Patients undergoing therapy for breast cancer should, therefore, be fully counseled, prior to treatment, as to the potential short-term and long-term risks associated with breast cancer therapy. Evidence-based treatment guidelines should be developed, and integrated into breast cancer clinical pathway algorithms.
The effects of cancer and its treatment endure long after medical treatment ends. Some changes may actually be positive (i.e., you may have a better appreciation of life, or you may have become closer to your family and friends). Other negative changes (e.g., lingering pain, scars, or lymphedema) may serve as constant reminders that you have been diagnosed with cancer.
When pain symptoms persist, you may not always find sufficient compassion and empathy. Friends and family and even health care personnel, may appear skeptical regarding your complaints, because post-treatment pain is not always visible and can't be easily measured.
When painful or uncomfortable symptoms persist, you may sometimes have interactions with others that appear to be lacking in sufficient compassion and empathy. Friends and family, and even health care personnel, may appear judgmental or skeptical regarding your concerns, because post-treatment pain is not always visible and can't be easily measured.
PBTPS is an uncommon diagnosis. This is especially so, as healthcare professionals often have little experience in making this diagnosis and treating this syndrome. You may, need to take a proactive approach to educate your healthcare team about this problem, and to seek effective solutions from them. As previously noted, PBTBS is best treated as early as possible, because it may become a chronic condition, and more resistant to effective treatment when diagnosis and initiation of therapy is delayed.
It is normal to have tightness around the incision (and under your arm if you have had lymph nodes removed from the armpit region) during the first few months after surgery. Moreover, sensory nerves are often intentionally cut during surgery to remove the lymph nodes. This generally results in a tingling pins and needles sensation in the upper inner arm area during the first few weeks after surgery, as the brain attempts to compensate for the loss of innervation of this area. Later, numbness of the affected area usually ensues, and for the vast majority of patients, is not unsettling or uncomfortable. Severe burning or stabbing pain, or severe itching, near incisions, or in the upper inner arm, months after surgery is unusual, however, and may indicate the development of PBTPS. If pain interrupts your sleep at night or significantly impairs your daily life, or if wearing clothing is uncomfortable, then you should ask your physician to refer you to a physical therapist and/or a pain management specialist.
Post Breast Therapy Pain Syndrome (PBTPS) is often not diagnosed. Many professionals are unaware this problem even exists because they have little experience in making the diagnosis, and in treating this syndrome. You may, need to take a proactive approach to educate your health care team about this problem, and to seek effective solutions from them. PBTBS is best treated as soon as possible, because it becomes chronic and more resistant to effective treatment when diagnosis and initiation of therapy is delayed.
We wish to thank The Susan G. Komen Breast Cancer Foundation, San Francisco Bay Area Affiliate for their support of this project
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