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Post Breast Therapy Pain Syndrome: The Patient's Perspective

Alexandra Andrews, WM, David Bradley, Eileen Pichersky, BA


The Canadian Medical Association's Steering Committee on Clinical Practice, in Section 10 of its Guidelines for the Care and Treatment of Breast Cancer, calls postmastectomy syndrome "a fairly common sequel of breast surgery" (although it also occurs with lumpectomies). All patients should be warned that it may occur, but also that if it does, it does not necessarily signify a recurrence of cancer.2

It is estimated that between 10% and 30% of patients will suffer persistent pain after breast surgery, due to injury to the intercostobrachial nerve (a cutaneous branch of T1-2). No explanation is given for the frequency with which this nerve is accidentally severed, but it seems to be a more common occurrence in axillary dissections or total mastectomies than in breast-conserving surgeries.

www.cancerlynx.com was the first to comment on this syndrome in September 2000, and we continue to gather information about it. Judging by the enormous feedback from our website visitors, postmastectomy pain must be a common problem, in which interventional therapy seems to be more an afterthought than part of a preventive strategy. While any surgery patient may experience pain upon waking, the suffering of post-mastectomy patients often lasts for years without relief. Some patients report that a diagnosis of their condition was difficult to obtain. Many only had this condition recognized by their medical care providers after they brought in articles from the Cancerlynx - We Prowl the Net website.

There are few studies on long-term side-effects from surgery. Typically, a surgeon does not track the patient's condition post-operation for more than a few weeks. While any given surgeon may or may not know about this syndrome, it is clearly the responsibility of the ordinary oncology team to be prepared to treat such a patient's pain.

Diagnosing postmastectomy syndrome in a timely manner is part of the problem. For one thing, the problem often takes 30 to 60 days to become apparent. In only a small percentage of patients, pain as well as paresthesia -- a creeping, tingling sensation -- is present immediately after surgery. Another common time for the syndrome to appear is after post-surgical radiation treatments. Lymphedema can be a side effect of radiation, and perhaps aggravates the syndrome; or there may be other, underreported radiation side-effects. On this subject, too, there are few long-term studies available.

What is known is that patients often experience burning pains in the chest wall, arm and underarm, and an accompanying sense of tightness, like a swelling no one else can feel. Approximately 40% of postmastectomy patients find their pain significantly worsened by mere movement. They may experience sharp pains radiating around the rib area, underneath the bra line, or sometimes shooting pains or numbness in their arms and hands. Such pain naturally causes one to restrict arm activity, but this creates the risk of having a paralyzed or frozen shoulder.4 5 6

The skin may become easily irritated, in a condition called allodynia. One patient described it this way:

"The skin over my incision feels as if it's been rubbed off with a metal brush. I can't bear the touch of clothes or even the sheet. My upper arm feels as if all the skin has been peeled off. I must hold my arm up all the time -- if it lays against my side, the porcupine nesting in my armpit jabs its needles in harder. It begins to dawn on me that this is not normal." 3

Another hardy sufferer colorfully describes their pain as "charley horse of the breast". More than one has said, "Some days, it hurts just to breathe." 7

Because postmastectomy syndrome so often leads to worries about recurrent cancer, it is only reasonable for all patients to be informed, before and after surgery, about when and where such postsurgical pain may occur. 2Currently, however, it is still common for the problem to be dismissed as a rare side-effect that is almost always temporary. Too many seem to believe that it's all in the patient's mind.

"They gave me a prescription for Tramadol, but it might as well have been sugar pills, it gave me no relief. I was then advised to get psychiatric help, and this made me feel even worse." 3

Generally, opiates and narcotics such as paracetamol and morphine have not worked well against this syndrome. The suffering patient is willing to cooperate and trust their medical team, even when their complaints are being ignored or minimized. Many try stoically to live with the pain and "get used to it". They wait until after the surgical drains are removed, and when the pain still doesn't stop, they give up on trying to wear their prosthesis.

Those confined to wheelchairs have a particularly difficult time, as they gradually lose the arm and shoulder strength needed to propel themselves, but even these patients listen, at least the first several times, as nurses or interns assure them that the nerve endings are just healing very slowly.

Inadequately treated acute pain often becomes chronic. In the words of Dennis S. O'Leary, M.D., president of the Joint Commission of Accreditation of Health Care Organizations: "Unrelieved pain has enormous physiological and psychological effects on patients. The Joint Commission believes the effective management of pain is a crucial component of good care. Research clearly shows that unrelieved pain can slow recovery, create burdens for patients and their families, and increase costs to the health care system."

It should be routine for a pain specialist to be on the medical team. Even if there is no apparent problem, it should be normal procedure to schedule an examination with a pain specialist 30 to 60 days after surgery. If the pain specialist finds that there is in fact a problem, the next step is to examine possible causes of the pain, such as neuroma formation -- commonly known as nerve damage. Due to "centralization" or "plasticity", the pain sometimes becomes self-maintaining in the central nervous system -- basically, the brain and spinal cord. A pain specialist can perform a series of nerve-blocking tests -- stellate, radiofrequency and endoscopic sympathectomies.

Prescribing medication is a balancing act between pain relief and the patient's pain threshold. Among the drugs that have proven helpful are Elavil, Effexor, Neurotin, Remeron, Clonidine, opiates, anticonvulsants, muscle relaxants, and anti-arhythmic heart medications. One successful approach began with intravenous lidocaine, followed by a long-term regimen of the oral painkiller Mexilitine. 4 Some patients found relief in physical therapies such as acupuncture, biofeedback, compressions on the surgery sites, moist heat treatment, ice bags, myofascial release, osteopathy, phantom limb massage, and in certain extreme cases, re-surgeries to clean out scar tissue and tighten loose skin.

Among the last resorts are spinal cord stimulators, intracathal drug pumps, and various neurolytic procedures in which the nerves themselves are sacrificed or modified to reduce the pain. These procedures require the services of an interventional pain specialist, preferably one certified by either the American Board of Anesthesiology (Added Pain Qualification) or the American Board of Pain Medicine.4

Postmastectomy syndrome must not continue to go unrecognized and untreated. Health-care institutions at every level are called upon to:

  • recognize the right of patients to appropriate assessment and management of pain
  • facilitate regular follow-ups to assess and record the nature and intensity of pain
  • determine and assure staff competency in pain assessment and management, addressing this issue in the orientation of all new staff
  • establish policies and procedures which support appropriate prescription and supply of effective pain medications
  • educate patients and their families about effective pain management
  • address patient needs for symptom management during planning for the patient's release from care

It is rarely easy to deal with problems that deviate from the standard models of doctor-patient relations, but it is plain that what has been done in the past has not worked well. Innovative treatment can only arise out of open-minded approaches.

The precise neurological mechanisms involved in postmastectomy syndrome will probably only become known following much more exhaustive research into "receptor theory" than has yet been carried out; nonetheless, the average medical team should be able to anticipate this kind of pain, and intervene appropriately.

If you or someone you know is scheduled for breast surgery, please remember that patients in pain have rights. The last thing that a post-op patient should be is a stoic. You are not crazy. The pain of neuropathy is very real, and can last a long time. Be your own best advocate. Demand adequate medication.

References:

  • 1.  1995. Stevens, P., Dibble, S., & Miaskowski, C. Prevalence, characteristics and impact of post-mastectomy pain syndrome: An investigation of women's experiences. Pain, 61, 61-68.
  • 2 Canadian consensus document from the Canadian Medical Association. Clinical practice guidelines for the care and treatment of breast cancer: the management of chronic pain in patients with breast cancer (summary of the 2001 update) 10. The management of chronic pain in patients with breast cancer Chris Emery, Romayne Gallagher, Maria Hugi, Mark Levine, for the Steering Committee on Clinical Practice Guidelines for the Care and Treatment of Breast Cancer CMAJ 2001;165(9):1218-9
  • 3 www.cancerlynx.com/mastectomy_pain.html Cancerlynx - Mastectomy Pain Advice ,Wendy Sheridan, 2000
  • 4 www.cancerlynx.com/breastpain.html Cancerlynx - Persistent Pain after Breast Surgery, Jim Barnett, MD 2001
  • 5 www.cancerlynx.com/mastectomy_syndrome.html Cancerlynx - Post Mastectomy Syndrome, Sarah Shorr, RN, 2001
  • 6 www.cancerlynx.com/mrm_pain.html   Cancerlynx - MRM Nerve Damage, Norma Steele, 2000
  • 7 www.cancerlynx.com/syndrome.html  Cancerlynx - Comments on Post Mastectomy Syndrome, 2000


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First appeared March 1, 2002; updated October 31, 2007