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Many Women Report Phantom Breast Pain After Mastectomy (dateline October 23, 2000)

In a study conducted at Johns Hopkins Hospital, researchers found that more than one third of the women who underwent mastectomy (surgical breast removal) to treat breast cancer experienced phantom breast sensations and other pain after surgery. The incidence of phantom breast pain was similar, regardless of whether or not the women had breast reconstruction after breast cancer surgery. According to the researchers, women should be aware that phantom breast pain can be a side effect of mastectomy and they should report post-surgical breast pain to their physicians early to avoid experiencing persistent pain.

In the study, researchers mailed questionnaires to breast cancer patients who underwent mastectomies with or without breast reconstruction at Johns Hopkins Hospital between May 1996 and April 1999. Of the 279 who responded to the survey, 39% reported having phantom breast sensations after mastectomy. The frequency of these symptoms ranged from patient to patient. Some women reported phantom breast pain on a daily basis, while others reported it weekly or less than once a month after surgery. The average length of time that the women experienced phantom breast pain was 20 months, although some women only experienced sensations for a few months.

Of the women who reported breast sensations after mastectomy, the most common symptoms were:

  • Unpleasant itching (48%)
  • Pins and needles (29%)
  • Pressure (24%)
  • Throbbing (21%)

According to Srinivasa Raja, MD, and his colleagues at Johns Hopkins Medical Institutions, almost half of the women who responded to the survey had breast reconstruction after mastectomy, with either breast implants (saline or silicone) or TRAM flap procedures (uses abdominal tissue to rebuild the breast). The incidence of phantom breast pain was similar among the women who had breast reconstruction. The researchers say this is because the body does not recognize the reconstructed breast as normal tissue, even if tissue is used from another area of the patient's body. According to physicians, most women will have little sensation in their reconstructed breast.

The researchers did notice that the women who underwent breast reconstruction experienced more weakness and numbness at the surgical sites than the women who did not have breast reconstruction. According to Dr. Raja, reconstructive breast surgery is more extensive, requires more tissue dissection, and could potentially cause unavoidable injury to the nerves during the procedure.

Physicians believe that phantom breast pain occurs after mastectomy for the same reasons as phantom pains occur after limb amputations. According to Dr. Raja, during mastectomy, small nerves are cut between the breast tissue and skin area. This causes the neural connections in the brain to undergo neural plasticity (reorganization). This process, as well as the spontaneous firing of electrical signals from the ends of cut or injured nerves, causes phantom sensations, said Dr. Raja. Women who experience breast pain prior to mastectomy are most likely to have sensations of pain in the breast area after surgery.

Possible side effects of mastectomy may include:

  • Phantom breast sensations or pain
  • Wound infection
  • Hematoma (blood trapped in the wound) or seroma (clear fluid trapped in the wound)
  • Lymphedema (chronic arm swelling), if lymph nodes are removed during surgery
  • Numbness in the upper-arm skin

When breast cancer is detected in early stages, breast cancer surgery may be less extensive. Many patients will undergo lumpectomies (removal of breast lumps) or mastectomies that do not require removing lymph nodes. These less extensive surgeries can preserve nerves and reduce the incidence of phantom breast sensations or pain.

Physicians recommend that patients who experience phantom sensations in the breast area after surgery report their symptoms to their physicians immediately so that the pain can be properly managed. In some cases, exercise or breast massage may help alleviate phantom breast pain, although patients should first discuss these options with their physicians. In more severe cases, medications may be prescribed to reduce phantom breast pain. Phantom breast pain does not indicate that cancer cells are still present in the breast area or that cancer may return.

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