Donna L. Cole thought the worst of her ordeal with breast cancer was nearly over four years ago after she underwent a bilateral mastectomy and breast reconstruction.
Instead, the Edgewater woman found herself suffering from what she described as "a constant, debilitating, horrific pain." It felt like a heavy piece of metal was bearing down on her chest at all times, she said. The pain persists today and is so bad that Cole hasn't worn a bra in years.
Cole is one of the 20 percent to 30 percent of breast cancer survivors who suffer from post-mastectomy pain syndrome, or lingering nerve pain in the chest wall, armpit or arm. It often follows surgery to remove, partially remove or reconstruct breasts.
It is a condition some in the medical community have dubbed the "black hole" of breast cancer because many patients have never heard about it until they are doubled over in pain from the condition. The pain can feel like an intense burning, a shooting pain, and in some cases persistent itching.
In the race to get rid of the cancer and save patients' lives, not all doctors may think to tell their patients about the possibility of reoccurring pain. Patients caught off guard by the pain sometimes see it as a side effect of cancer they just have to live with.
"Cosmetic surgeons put you back together and make you look good," Cole said. "But then you're living with this scenario where you're dealing with this awful pain."
Doctors believe the pain occurs as a result of damage to nerves in the armpits and chest during surgery, but little is known about what causes the pain and why some women get it and others don't. While the name refers to a mastectomy, women who have had a lumpectomy, in which just the tumor and the tissue around it are removed, can also suffer from the condition.
Some research has shown that there are some characteristics that might make more women prone to pain. Women who are younger or who have had a full axillary lymph node dissection, or all the lymph nodes removed from under the armpit, are more likely to suffer problems with pain. Those women who get just the sentinel lymph node removed are less likely to have complications with pain. The sentinel lymph node is where the cancer is most likely to first spread from the tumor.
Doctors said more attention is being paid to post-mastectomy pain, but more research is needed to better understand it. Because pain exists after any major surgery, the ailment may be difficult to diagnose at first.
"I think physicians are trying to define it more and come up with a stricter definition," said Dr. Emily Bellavance, a breast surgeon and assistant professor in the department of surgery at the University of Maryland School of Medicine. "I think, as a whole, the medical profession in the past 15 years or so has been much more open to treating pain in general and asking more about it."
There are different ways to treat post-mastectomy pain, but not every method works for every patient.
For instance, some opioids don't always work because the disorder is believed to be caused by nerve pain. Opioid drugs bind to opioid receptors in parts of the body, such as the brain and spinal cord, to reduce the pain message sent to the brain, but don't target nerve pain well.
Dr. David Maine, director of the Center for Interventional Pain Medicine at Mercy Medical Center, will prescribe membrane stabilizers to some patients. These drugs, which are primarily used in epilepsy patients, calm nerves. X-rays and ultrasounds can also be used to identify which nerves are causing the pain so they can be blocked. Steroids can also help calm the pain, and in other cases, parts of the nerve can be removed.
It can take time to evaluate a patient and find the right treatment that will help manage the pain, Maine said.
"Sometimes it can be difficult to find providers who have experience with this and can treat it," he said.
Cole spent four "exhausting" years visiting doctors to try to find a solution to her pain. She missed countless days of work because she felt miserable. Doctors prescribed narcotics, which did not help. Nerve blocks also didn't help. One doctor blamed the pain on herniated discs in her back.
Cole finally got help this summer from Dr. Eric Williams, a peripheral nerve specialist in Towson. Williams resected, or cut out, part of three intercostal nerves located in the left middle part of Cole's chest. Intercostal nerves travel from the spinal cord to the sternum and control the muscles between the ribs.
"It worked right away," Cole said. "I'm numb, and that is what I want to be. It is blissful."
Williams said many women come to him feeling desperate because they can't get rid of the pain in their chests. Williams was part of a group of doctors that published a paper this year in the journal Microsurgery that looked at 10 patients treated surgically for pain after breast cancer surgery. The idea was to get a better understanding about the phenomenon and pass it on to other doctors.
The paper also pointed out that early evidence shows that removing intercostal nerves is a good treatment. Larger studies are needed to further validate the treatment.
Williams said there is still much to learn about the disorder. Three patients mentioned in the doctors' paper failed initial surgical attempts or relapsed after surgery. The remaining patients were pain-free.
"Some women I have not been able to make better at all," he said. "We definitely have much more success in women who have pretty well-defined pain."
Cole still has some pain and plans to get nerves removed from the right middle part of her chest as well as from her right armpit.
"I so hope pain will be a distant memory some day," she said.