“Pain is a more terrible lord of mankind than even death itself.” ~ Albert Schweitzer
Cancer pain has many causes. In the early stages of treatment, pain is most often the result of a tumor pressing on muscles, bones or nerves. This kind of pain typically subsides fairly quickly with treatment. As the tumor shrinks, the pain goes away.
Many aspects of cancer treatment may also cause pain. Radiation therapy causes inflammation, which (depending on the area being radiated) can lead to a great deal of pain. And chemotherapy can cause mouth sores, phlebitis (inflammation of the veins), joint pain, or neuropathy, any one of which can lead to varying degrees of pain. Surgery, including reconstructive procedures, also causes pain.
Fortunately, when cancer treatment is over, treatment-related side effects usually subside. In fact, most cancer survivors go on to live relatively comfortable, pain-free lives.
But then, there are those who don’t.
Sadly, for some cancer survivors, pain persists for months and even years after therapy is complete. Sometimes the cause is obvious. Neuropathy, for instance, can lead to chronic pain in the hands and feet. Extensive surgery can cause persistent pain at the operative site. And “phantom pain” can occur when a body part, such as a limb or a breast, has been surgically removed. Doctors don’t fully understand why this happens, but they know that this type of pain exists.
But there are some patients whose pain is not so well-explained. These chronic pain sufferers have no clear-cut tissue damage and no underlying neuropathy — just lingering pain that never goes away. Not surprisingly, this kind of pain is often accompanied by depression, anxiety and fatigue.
“I thought I was done,” Tom says bitterly. “The radiation and chemo were unbearable. But I toughed it out. Now I’m off therapy, and the cancer is in remission. I should be celebrating! But here I am 18 months out and I’m in more pain than I was before. I hurt all the time and no one can tell me why.”
Ironically, Tom’s stoicism during his cancer treatment may have something to do with his chronic pain. Studies show that undertreated acute pain, such as pain from mouth sores, surgery or chemically-induced phlebitis, can lead to “central sensitization,” a phenomenon in which the brain misinterprets normal sensations as pain. This can manifest as allodynia, a condition in which even light touch induces a painful response. Or it may cause hyperalgesia, in which a small injury, such as stubbing a toe, can create excruciating pain.
To make matters worse, most cancer survivors are no longer cared for by their oncology team. Once cancer treatment is complete, their primary care provider takes over their care. And primary care doctors are rarely skilled in the management of chronic pain. What’s more, even those who are knowledgeable are usually reluctant to prescribe medicine for a patient whose pain has no obvious source.
“It’s a real culture shock,” Tom explains. “When they’re treating you for cancer, everyone wants to help. If you’re hurting, they give you medicine. You have cancer, so of course, you’re in pain! No one questions whether your pain is ‘real.’”
“But now my cancer’s in remission and I’m supposed to be ‘better.’ And they look at me like I’m a drug addict or something when I ask if I can have medicine for the pain. They don’t believe me. They tell me to take Tylenol and a warm bath. Do they really think I haven’t tried that?”
The feeling that their doctors don’t believe them is a common complaint among people with chronic pain. And in some cases, they’re right. Doctors are wary of what’s been termed “drug-seeking behavior,” and their wariness may cause them to discount symptoms they can’t measure or see.
Yet just as often, the doctor believes the patient, but simply doesn’t know what to do. As one physician said to me, “How can I treat something when I don’t know what it is?”
Communication Is Key
So the question becomes: How can someone like Tom find the relief he needs? No doctor wants their patient to suffer, and Tom was, quite obviously, suffering a great deal. He had not returned to work. He was angry and depressed. And his mental state was almost certainly aggravating his physical pain.
According to one expert in cancer pain management, communication is the key — or at the very least, the first step to helping patients with chronic pain. “Pain assessment is hard because it’s all about communication,” said Michael Fisch, M.D., chairman of the department of general oncology at MD Anderson Cancer Center in Houston. “Communication between patients and doctors about pain isn’t easy and hasn’t gotten easier in 20 years,” he said.
In fact, Dr. Fisch says that it’s even harder today because appointment times have become more and more compressed. Most cancer doctors spend about 25 minutes with each patient. In the primary care setting, appointments are a mere 15 minutes long. And studies show that doctors spend about half that time doing paperwork or staring at a computer screen.
It’s hard to have an in-depth conversation when you have 8 minutes to talk. Nevertheless, it’s important to try. One thing that helps is keeping a pain diary, where you record the location, type and intensity of your pain throughout the day. This will give both you and your doctor a detailed picture of how your pain behaves and how it impacts you each day.
Learn to Be Flexible
Just as important as good communication is flexibility and a willingness to try new things, which includes finding a new doctor if you’re unhappy with the one you have. Doctors now have many weapons in their arsenal against chronic pain. Medicines used to treat seizures have been found to be very effective for neuropathy and chronic nerve pain. Antidepressants are also effective for some people, although they usually take some time to work. Antidepressants can also help alleviate symptoms of depression and anxiety, which contribute to physical pain. Doctors are even finding that Botox, the anti-wrinkle injection, is effective in treating certain types of pain.
But drugs alone are rarely the answer to helping a person with chronic pain. Pain is complex and multifaceted, and treating it effectively requires a comprehensive approach. Physical therapy can help break up scar tissue and ease muscle pain. Psychotherapy can help patients learn to manage their thoughts and emotions, which is an important part of both cancer recovery and learning to cope with physical pain. Complementary and alternative therapies also help many patients for whom traditional medicine has had little effect. These therapies may include biofeedback, massage, yoga, acupuncture and meditation, to name just a few.
Since we last spoke several months ago, Tom has found a new doctor, a naturopath who specializes in treating cancer survivors with a holistic, whole-person approach. He is eating a more nutritious diet and has given up alcohol and caffeine. He sees a massage therapist once a week and has started a gentle exercise program that includes yoga and a daily walk. He’s mediating every day. And, on the advice of a psychotherapist, he has been taking a low dose of the antidepressant Lexapro.
“I’m still in pain,” Tom tells me. “But it’s nowhere near as bad. I think half of why I feel better is because someone is finally taking my pain seriously. And the other half is because I’ve stopped demanding answers and started doing things to help myself. I felt so helpless before. Now, this doctor has shown me there’s a lot I can do on my own….That feels good.”
Chronic pain is a stern taskmaster. It saps your energy, your vitality, your motivation and your strength. It makes concentration difficult and interferes with sleep. But you can learn to cope with it. And as you do, you will find that life gets a little bit easier day by day.
You got through cancer. You’ll get through this, too.
YES IS A WORLD& IN THIS WORLD OFYES LIVE
Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.