carrie2“My dad died within six months of his diagnosis,” says Carrie Johnson, MD, now an anesthesiologist and cancer pain management specialist. “And it shaped what I am doing with my life.” Her dad had surgery, but the cancer spread quickly and chemotherapy proved ineffective. As the disease progressed, so did his pain. It was not until very late that his care team focused on reducing his pain.

At the time, high-dose opioids were the most common treatment method for cancer pain. This meant her father was asleep for most of his final weeks—and if he wasn’t asleep, he was in pain.

“My dad was suffering the whole time,” says Dr. Johnson, who practices pain medicine at Carolinas Pain Institute in Winston-Salem, North Carolina. “He had no quality of life. He couldn’t spend time enjoying his loved ones.”

Her father’s final days transformed Dr. Johnson; the psychology major hadn’t been on a medical school track before, but what she experienced changed her path. “Doctors are looking for a cure for cancer,” she says. “And we should. But in the meantime, we can do something about the pain that so often accompanies it.”

Dr. Johnson set to work on cancer pain research almost immediately. After college graduation, she didn’t head to medical school right away. She first earned a fellowship to study at the National Institutes of Health (NIH), at a time when one of the biggest projects involved mapping the human genome. She was part of a team looking for cancer genes.

“We were looking at basic cancer mechanics—not at the biology of pain,” she says. “And I realized: We are not going to cure cancer in this decade. I was struck by all the oncologists focusing on aggressive chemotherapy regimens. I thought someone should be focused on quality-of-life issues and patients’ struggle with pain management.”

Let a cure for cancer be the goal, she thought, but in the meantime, don’t let patients suffer. Cancer pain should be addressed now.

Dr. Johnson had already seen first-hand how successfully doctors managed surgical pain in the OR and post-operatively, but she recognized that often too little was done to treat pain and maintain quality of life after the patient came home.

SPREADING THE NEWS: EARLY CANCER PAIN RELIEF IS BEST

Armed with a medical degree and a PhD in molecular cancer biology, Dr. Johnson is striving to provide people with the pain relief her dad didn’t have. Her mission: to educate others about options for early cancer pain management. She hopes both oncologists and people fighting cancer will take note.

One on one, in groups, at conferences or any way she can, Dr. Johnson asks oncologists to consider bringing in a pain specialist to help care for their patients early in the treatment process.

[pullquote]The reaction she gets? Mixed.[/pullquote]

 

 

 

 

“It’s a big challenge to convince an entire culture of physicians to try something different,” she says. But their reasons for resisting, she says, are noble. “Oncologists are dedicated to their patients and passionate about the work they do,” she says. “I think they wonder if I can be as dedicated.”

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carrieWHY IS EARLY PAIN MANAGEMENT MOST EFFECTIVE?

Dr. Johnson says it’s important for physicians and patients to understand the benefit of managing pain before it becomes a chronic condition. Considering pain at the onset of treatment may even help the treatment be better tolerated and thus more effective.

While chemotherapy is killing cancer cells, it may also be damaging peripheral nerves in many patients. Some patients may develop associated debilitating pain in their feet, hands and legs. The pain may also become permanent—something patients must continue to live with even after they’re in remission.

“Some patients have to pause chemo because it’s causing such severe pain,” says Dr. Johnson. There’s even a name for the condition: chemotherapy-induced peripheral neuropathy. “Pain management doctors can offer treatments to reduce or eliminate the pain and allow the patient to avoid taking a break from the life-saving chemotherapy.”

carrie4WHAT IS CHEMOTHERAPY-INDUCED NEUROPATHIC PAIN?

Chemotherapy-induced neuropathic pain is characterized by a tingling or burning sensation—sometimes described as “pins and needles”—in the affected areas. It usually starts in the toes and feet and moves its way up the legs in what’s called a “stocking distribution” because of the way it fits almost like a knee-high stocking.

But patients need not live with pain. According to Dr. Johnson, there’s a whole family of medications that can modulate the pain signals.

CANCER ITSELF, NOT JUST CHEMO, CAN CAUSE NERVE DAMAGE

What’s more, new research has revealed that patients can experience peripheral nerve damage as a result of the cancer itself. “Patients usually don’t realize their sense of touch is altered, but changes can be detected with sensitive sensory testing techniques,” Dr. Johnson explains.

“These tools, in addition to a blood screening test, could potentially help us identify who’s most likely to develop painful neuropathy as a result of cancer treatments,” she says. “Then, pain physicians can start medications early in the course of chemotherapy to try to prevent the development of pain.”

Doctors don’t yet know exactly why some cancer patients suffer nerve damage and others don’t. It may have a genetic component, Dr. Johnson ex-plains. “It could also be influenced by epigenetic, metabolic or proteomic factors.”

PATIENTS: WORK WITH A TEAM, BE YOUR BEST ADVOCATE

According to Dr. Johnson, cancer patients and their families can and should advocate for themselves. And it’s best to work with an entire team of doctors and health care personnel, with the oncologist as quarterback. Dr. Johnson advises patients to ask their oncologists a few important questions early in the process—at or just after diagnosis:

Is my disease going to be painful?

What options do I have for pain management?

Is there anyone specific who should be involved in my care?

When an oncologist brings Dr. Johnson in early in a patient’s treatment, she generally introduces herself, explains what she does and tells the patient, “I’m here if you need me.” She hopes patients don’t need her. But she likes to make them aware of what she can do if their cancer pain—or chemo-related pain—becomes too much for them to tolerate on their own.

carrie6“Patients are often referred to me when their pain has reached crisis levels,” she says. She wants them to know they don’t have to wait until they’re having a pain emergency. In fact, once the pain has become severe, it can prove more challenging to relieve. Early pain management is more effective pain management and therefore a very important consideration at the time of cancer diagnosis.

NEW CANCER MEDICATION DELIVERY OPTIONS

When her father was dying, the only options available for pain were opioids administered by mouth. But Dr. Johnson wants readers to know that there are potentially life-changing benefits through a method called intrathecal drug delivery. With this technique, pain medicines are delivered straight to the central nervous system through a small catheter in the back. Doctors can deliver lower doses that relieve pain effectively—without turning the patient into an over medicated zombie.

“Every day, I wish my dad were here,” Dr. Johnson says. “But knowing I’ve used my own experience to help pay it forward brings me peace. I can help people and their families enjoy a better quality of life during one of the most fragile and difficult times.” {PP}