Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
Doctors must do more to understand the source of pain and how to prevent and treat it.
Fourteen years ago, CURE magazine sponsored a survivors’ forum and scheduled a breakout session on pain. Survivors packed the room, eager to ask the physician panel about the post-treatment pain that affected their quality of life.
The doctors offered few solutions. At one point, a woman at the back of the room began wailing, holding her right arm close to her body as she rocked back and forth. Her husband rubbed her back vigorously and appeared to be in as much pain as she was. The episode lasted a few minutes. When the woman was able to talk, she apologized to the other attendees and explained that ever since her mastectomy six months prior for stage 1 breast cancer, she experienced occasional searing pain that felt like someone had jabbed a hot poker into her armpit.
There was no predicting when it would come or how strong it would be, making her a hostage to her pain, she said. She couldn’t drive, especially with her children in the car, and leaving home for any reason was a challenge. “Why is my pain so much worse than anyone else’s?” she asked.
The panelists explained that she had post-mastectomy pain syndrome (PMPS), a condition that can cause nerve endings to sometimes fire for no reason, creating mild to severe pain. But, they told her, it would get better over time. Probably.
Clearly, this was one of those survivor issues that doctors knew little about. One panelist even admitted the lack of progress in managing pain. That was 14 years ago, and still, not enough progress has been made.
Cancer survivor pain has long been an issue, but it has become a more significant challenge as people with cancer are living longer. For the 20 to 40 percent who experience the pain, causes stem from an assortment of sources and affect different parts of the body, depending on the cancer location and treatment. Surgery, chemotherapy and radiation all can cause pain, which can strike immediately and continue or appear months, even years after treatment ends and can last any length of time.
More and more people who have or had cancer are living well beyond the 10-year mark, once thought to be beyond the maximum. That’s good news, of course, but it also brings to the forefront issues that affect quality of life, such as pain. Many cancer centers have created departments specifically for survivors and symptom management.
Natalie Moryl, M.D., an associate attending physician at one such center, the Survivorship and Supportive Care Division at Memorial Sloan Kettering Cancer Center (MSK) in New York City, says the most common patient complaint involves chemotherapy-induced neuropathy of the feet and hands, followed by pain associated with cancers of the head and neck and post-mastectomy pain.
Treatment for neuropathy pain includes anti-epileptic drugs, anti-seizure medications and antidepressants.
“There are also numerous physical therapy and integrative medicine approaches: massage, acupuncture, physical therapy, exercises, cognitive, behavioral therapy psychological support, counseling and changing the lifestyle to adapt to the new limitations,” Moryl says. Some patients ultimately require opioids to function, she adds.
Efforts to decrease post-treatment pain have led to changes in surgical interventions, chemotherapy and radiation techniques, all of which affect pain. Three years ago, MSK created a Division of Survivorship and Supportive Care, not only to support people who are going through cancer treatment and their caregivers, but also to learn more about the experiences of cancer survivors and the long-term or chronic conditions that may be consequences of successful cancer treatment. The division addresses issues that have emerged as important to quality of life for cancer patients, including pain, fatigue, and emotional and spiritual distress, and encourages thought leaders to do further research into these areas.
Surgical management of breast cancer has changed greatly over the past three decades, Moryl says. More breastconservative surgery and less aggressive mastectomy have been shown to be a safe alternative to earlier approaches, reducing the risk of chronic PMPS in these cancer survivors.
PMPS symptoms include pain and numbness in the chest wall, armpit and arm, she says, as well as a painful pins and needles sensation; unbearable itching; and sharp, severe pain at even a light touch of the skin. The shoulder or area of the surgical scar may also hurt. Most of the 20 to 30 percent of women who have PMPS don’t have severe pain; for those who do, it lessens with time and therapy, she says.
Overall improvements in treatment have reduced the incidence, frequency and severity of PMPS, Moryl says, allowing surgeons to do less radical, less mutilating surgery. But the risk still exists, and PMPS can be debilitating, she says. Sometimes, women experience pain so severe, they cannot wear a bra or tight clothing.
It’s important for a woman to get adequate pain control as soon as possible, Moryl says, or she will begin to reduce movement to protect her arm and guard her shoulder. That could lead to adhesive capsulitis, also known as frozen shoulder, which compounds the pain of PMPS and creates more problems. With frozen shoulder, any movement in the area can hurt.
The condition is serious, Moryl says: “It needs to be treated as soon as possible and as aggressively as possible with physical therapy, massage and stretching the shoulder to increase the range of motion. With physical therapy, pain from frozen shoulder can resolve completely. You can’t do that if pain is not controlled.”
MSK works with patients on symptom management as part of the Division of Survivorship and Supportive Care; other cancer centers have hired palliative care specialists. Beginning the day of diagnosis, these health professionals treat the symptoms, side effects and emotional problems that emerge during the cancer journey to provide the best quality of life possible.
Lauren Shaiova, M.D., director of palliative care at Brookdale University Hospital Medical Center in Brooklyn, New York, describes the hospital as serving a predominantly black population of uninsured or underinsured people.
“They are plagued by poverty, addiction and very low socioeconomic status,” she says.
Opioids remain the most effective pharmaceuticals for treating cancer pain, but recent attitudes about these drugs, as well as increasingly restrictive laws, have created barriers to writing and filling prescriptions. “Because the government has confused cancer pain with addiction, many patients have untreated pain,” Shaiova says. Patients in her care face additional hurdles due to poverty and lack of education, and many have untreated pain, which she sees as the biggest obstacle to a good quality of life.
“They have untreated neuropathies, which is a type of pain,” Shaiova says. “Some patients have uncontrolled shortness of breath that would absolutely be controlled on opioids. Some people have had a pneumonectomy or a lobectomy, so they will always be short of breath. A little bit of morphine, a little teeny bit of an opioid could afford them control of their breathlessness.” But, in the United States, access to morphine is tightly controlled. It can be difficult to find a good pain or palliative care specialist who incorporates opioid pharmacology in their practice but it may be worth the search, Shaiova says.
The reluctance of doctors and pharmacies to use opioids has led to new directions in pharmacology, she says, as well as a greater acceptance of non-pharmacologic treatments. For example, study findings show that physical activity can relieve pain, fatigue, anxiety and depression. Acupuncture, a 3,000-year-old therapy that began in China, appears to help by releasing chemicals in the brain to relieve pain.
Mind-body techniques such as meditation, yoga, music therapy and massage have also shown success in some patients. People who are considering complementary treatments will find a good resource on the Foundation for Peripheral Neuropathy website (foundationforpn.org).
An extensive section on options for coping with pain includes numerous pharmacologic choices, as well as complementary therapies.
Medical marijuana, which has shown success in relieving pain, brings its own access problems, such as finding a physician who — like Shaiova — has studied its use. “Patients who want to try this approach need to find a physician who knows what they are doing,” she says. “If we assess the pain as being neuropathic, the tetrahydrocannabinol in marijuana that treats pain might be lower, so we need to dial it up for neuropathic pain.”
Shaiova says that pain and addiction intersect at her hospital, creating difficulty because the neighborhood and its socioeconomic level cause doctors to hesitate even more to treat a patient who has cancer. “There’s a lot of prejudice and bias that go into treating pain as well,” she says.
In addition, pharmaceutical companies no longer make many of the opiates. “We used to have 40-milligram methadone tablets. Those stopped 10 years ago, so people who are on large doses have to take the five and 10 milligrams,” Shaiova says, adding that producing smaller doses does not seem like an effective way to control a drug problem.
Virginia Sun, Ph.D., RN, a nurse scientist at City of Hope, a comprehensive cancer center in Duarte, California, began looking at living with long-term pain when her research indicated that almost no one was exploring the issue. “We need to understand the mechanism of pain so we can better develop drugs to treat it and also know how to better support patients as they are living with these pain syndromes,” she says.
Pain can arise from multiple sources, so solutions can be equally complicated. Sun recommends that patients keep notes about symptoms, including about treatments received, which will help providers determine the source of their pain.
Knowing how to talk to providers about pain is also important, Sun says. “We remind [survivors] that if they have a new symptom, if they have gotten worse or if a treatment they have received in the past hasn’t helped much — those are all trigger points to contact their providers,” she says. “Perhaps there needs to be another discussion, another level of assessment to see what else can be done.”
When Sun began investigating pain management in 2012, she says, there was little research in the area — and none related to the patient’s perspective about living with pain syndromes, such as peripheral neuropathy (loss of feeling in the hands and feet). Her research focused on chemotherapy-induced peripheral neuropathy (CIPN) and what it is like to live with the syndrome’s challenges, such as falling and loss of sensation to temperature.
Developing more effective treatments means conducting studies to better understand the mechanisms of nerve damage and pain, Sun says. She theorizes that if physicians understood the impact of pain on a person’s life, they would approach treatment more carefully.