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Talking to Your Medical Team About Post Breast Therapy Pain Syndrome (PBTPS)
Karen Ritchie, MD, Sarah Schorr, RN, Charles M. Dollbaum, MD, PhD, Alexandra Andrews, WM, Jean Chan, BA, MA, SEd, Robert A. Wascher, MD, FACS

The effects of cancer and its treatment endure long after medical treatment ends. Some changes may actually be positive (i.e., you have a better appreciation of life, or you may have become closer to your family and friends). Other negative changes, such as pain, scars, or lymphedema, are 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.

Recognition of Post Breast Therapy Pain Syndrome (PBTPS) by the medical profession is still in its early stages. Often, PBTPS pain may not arise until 30-90 days after surgery. Moreover, many doctors are unaware of this problem because they have little experience in making the diagnosis, and in treating this syndrome. You may, therefore, need to take a somewhat proactive approach to educate your doctor or healthcare 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.

It is entirely 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. Sensory nerves are often intentionally cut during surgery to remove the lymph nodes, and this may result in a tingling sensation during the first few weeks after surgery and, later, numbness of the affected areas. However constant and severe burning or stabbing pain near the incision or in the arm, nerve spasms, or severe itching months after surgery is unusual. If pain interrupts your sleep at night or significantly impairs your daily life, or if wearing clothing (such as a bra) is uncomfortable, then you should ask your physician to refer you to a physical therapist and/or a pain management specialist. A pain management specialist is board certified by one or both of the following medical boards: The American Board of Anesthesiology-Added Pain Qualification, or the American Board of Pain Medicine.

Suggestions for discussing PBTPS with your doctor or team:

1. Keep a daily symptom diary and make three copies. Give one copy of your diary to your doctor/caregiver in order to share your symptoms with him/her. You may also ask your doctor/caregiver to place an additional copy in your medical records.

2. Examples of noteworthy observations:
A. Time of pain or other symptom occurrence
B. Type of pain (i.e. stabbing, burning)
C. Pain duration whether chronic or sporadic
D. What triggers the pain?
E. Location of the pain
F. What helps to relieve the pain.

3. Address your needs for symptom management. Make sure that all of the members of your medical team are communicating with each other about your pain problem, and that a plan of action is established.

4. If your physician dismisses your pain with statements such as: "It's just phantom pain", or "You are anxious", etc., ask your medical team to read the other articles included in the Post Breast Therapy Pain Syndrome Module or print out the Post Breast Therapy Pain Syndrome Information Handout . If the team is unresponsive to your complaints, seek a second opinion from a new medical team that understands PBTPS.

The best advice to anyone who has Post Breast Therapy Pain Syndrome is that the pain is real and can be treated. Most importantly, remember the pain does not necessarily mean recurrence of your cancer!!!

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first appeared in March 12, 2003; updated September 1, 2007