February 10, 2003
Talking to Your Medical Team about Post Breast Therapy Pain
Alexandra Andrews, Sarah Schorr, RN, BSN
Recognition of Post Breast Therapy Pain Syndrome (PBTPS) by the medical profession is in the early stages. Recognition has been delayed primarily because pain frequently does not occur until 30-90 days after surgery. Consequently, patients seldom have the opportunity to discuss the problem with their doctors, or are persuaded into believing the pain is not significant. Furthermore, debate continues as to whether or not the problem is the responsibility of the surgeon, or the oncologist who is the practitioner you are seeing most frequently when the problem is most likely to occur. You may find yourself in the position of having to advocate the severity of the issue to your doctor, and/or holding either your surgeon or oncologist responsible for addressing a solution to the problem.
Several nerves are cut during surgery, especially when removing the lymph nodes. While it is normal after surgery to have tightness around your incision and under your arm, it is not normal to have constant burning pain near the incision, nerve spasms, stabbing pains, or severe itching. If pain around the surgery site continues and/or you can't sleep at night or wear a t-shirt or a bra, it's time to insist on pain management. Ask to be referred to a physical therapist and/or an interventional pain specialist, Board certified by one or both of the following: American Board of Anesthesiology--Added Pain Qualification, or the American Board of Pain Medicine.
This kind of pain is best treated as soon as possible because, if left untreated, PBTPS can become chronic and untreatable. Do not let your medical team deflect the issue to another specialist or diminish the importance of your discomfort. Soreness of the surgical site is one thing, but burning (neurogenic) pain that continues months and months after the procedure is another.
Here are some suggestions on how to talk to your medical team about Post Breast Therapy Pain Syndrome (PBTPS).
1. Write out your questions and make three copies. Hand one copy to your medical professional and review your questions together. Ask that the third copy be put in your medical records.
- 2. Note the following:
- A. When did the pain or other symptoms start?
B. What kind of pain?
C. How long have you been experiencing this pain.
D. What triggers the pain?
E. Where is the pain?
F. What if anything helps the pain?
3. Ask how to address your needs for symptom management. Make sure that all 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 attempts to dismiss the issue with statements such as: "It's just phantom pain", "You are just anxious.", etc., ask your medical team to read the Cancer Lynx and Cancer Supportive Care articles (see references) that describe the symptoms of PBTPS. If this team will not listen to you, it's time to either get a second opinion or find a new medical team that is educated about PBTPS.
The best advice to anyone who has Post Breast Therapy Pain Syndrome is - the pain is real and can be treated. Most importantly, this kind of pain does not necessarily mean reoccurrence.
Alexandra Andrews and Sarah Schorr, RN are survivors of Inflammatory Breast Cancer. We have Post Breast Therapy Pain Syndrome