Pain is one of the harsh realities of cancer and its treatment: studies show that approximately 50% of all patients with cancer—and up to 90% of patients with advanced disease—experience significant pain. As grim as this may seem‚ numerous other studies have shown that proper medication can relieve this pain in the vast majority of patients.

So why are so many patients reluctant to discuss pain with their physicians?
“Patients typically have a very limited time with physicians‚ and during that time‚ they’re more worried about their chemotherapy or their radiotherapy than their pain management‚” says Kathleen M. Foley‚ MD‚ attending neurologist at Memorial Sloan–Kettering Cancer Center in New York City and a leading advocate for improved pain control. “They give their quality of life a low priority because they are looking for a cure.”

Patients may also downplay their pain for a variety of other reasons‚ including fear that the pain means their cancer is getting worse‚ worry that pain medications will cause addiction or intolerable side effects‚ concern that their physicians will see them as “complainers‚” or a mistaken belief that pain medications are only for patients with terminal disease.

The combination of patients’ fears‚ oncologists’ limited time‚ and both groups’ tendency to concentrate on cure rather than symptom management makes it all too easy for palliative measures such as pain control to fall between the cracks. As a result‚ many patients endure cancer-related pain far longer than necessary‚ a condition that pain experts such as Michael H. Levy‚ MD‚ PhD‚ director of the Supportive Oncology Care Program at Fox Chase Cancer Center in Philadelphia‚ Pennsylvania‚ finds completely unacceptable.

“Cancer or its therapy shouldn’t decrease your quality of life. We really have to raise the expectations of these patients‚” says Dr. Levy.

Even well-informed patients can set their expectations too low. When oncology nurse Barbara Browning was receiving chemotherapy for breast cancer‚ she learned firsthand the dangers of not paying attention to pain. “I have a high pain threshold‚ and I made some silly choices‚ thinking‚ ‘I can do this‚ the pain will go away‚’ she recalls. “When I began to have abdominal pain‚ I chalked it up to something I ate and ignored it until it was so bad I had to be hospitalized. That’s when they found the abscess.” One of Browning’s medications had caused an abscess in her colon‚ a condition that eventually required a colon resection—surgery that might not have been necessary had she told her physician about her pain.

Initiating the Discussion
Peter Staats‚ MD‚ director of the Division of Pain Medicine at Johns Hopkins School of Medicine in Baltimore‚ Maryland‚ says he particularly likes it when a family member or caregiver comes with the patient. “I know how overwhelming a doctor’s visit can be‚” Dr. Staats says. “Patients are nervous and sometimes forget to ask the right questions. If there is someone to remind the patient to ask these questions‚ that’s a great thing.”

The family member might also be aware of pain issues that the patient either won’t discuss or can’t describe.

“When a family member has pain‚ that person may not be such a good ombudsman for themselves‚” agrees Dr. Foley. “One of the best things family members can do is to have the information on the patient’s pain‚ give it to the physician and say‚ “Can we talk about this?”

Getting patients to talk about their pain can also be easier for family members than it is for physicians‚ and it might help to remind patients that pain control should be viewed as a part of cancer treatment the same as surgery‚ chemotherapy‚ or radiation. Indeed‚ pain is now defined as “the fifth vital sign‚” and hospitals throughout the United States have adopted a “pain care bill of rights” to encourage better pain management. In addition‚ there is evidence that pain management may enhance the efficacy of other treatments.

“Pain‚ in and of itself‚ will impair activity‚ participation with cancer treatment‚ how much patients are getting around‚ and how much they’re eating‚” explains Dr. Staats. “Bad pain is highly correlated with a decreased life expectancy. If we get pain under control‚ life expectancy should improve.”

For Browning‚ the inability to maintain her daily routine was the most troubling aspect of her pain. “When you’re in pain‚ you’re just wiped out. You have no energy. That’s what bothered me the most. I hated not being able to do the activities I normally did‚” she recalls.

Patients and caregivers should get as complete a picture as possible when evaluating pain. The patient should provide the physician with information that will enable him or her to pinpoint the source of the pain‚ identify the factors that make it worse or better‚ and choose the best treatment options to relieve it.
Pain experts such as Dr. Levy use standardized scales‚ diaries‚ and questionnaires to gather information on pain.

“We give the patient something to write on while they’re sitting in the waiting room‚ so they can actually draw their pain‚ give it a number‚ say how much it interferes with their activities‚” says Dr. Levy. “This gets them to focus on their pain so we don’t have to pull teeth to get the information; we can just look at the sheet and get a sense of what’s going on.” Examples of pain diaries and inventories can be found on the internet‚ but no matter the assessment tool‚ be sure to give information on the following aspects of the pain:

Intensity: How severe is the pain? Many patients find it helpful to rate their pain on a scale of zero to 10‚ in which zero is no pain and 10 is the worst pain imaginable.

Character: What does the pain feel like? Is it dull and achy? Burning and tingling? Sharp and stabbing?

Location: Where is the pain located? Localized pain may respond best to targeted treatments‚ such as radiation therapy or topical agents‚ while disseminated pain may require systemic medications.

Radiation: Does the pain move around? Pain that begins in a specific area of the body can sometimes radiate to other regions‚ like when back pain seems to “shoot” down a leg.

Timing: Does the pain occur (or become worse) at specific times of day? This information will help the physician decide on (or adjust) the schedule of pain medications.

Correlations: What seems to make the pain worse or better? Physical activity‚ other illnesses‚ and even emotional distress can have a significant impact on the severity of pain.

“A person may have no pain at rest‚ but when they go to walk they have intractable pain‚” notes Christine A. Miaskowski‚ RN‚ PhD‚ chair of the Department of Physiological Nursing at the University of California‚ San Francisco‚ and president of the American Pain Society. In such cases‚ the patient may only require pain medication when he or she wants to be up and about.

Implications: How is the pain affecting the patient’s day-to-day life? Pain does not have to be excruciating to have a negative impact on quality of life. If a patient is too uncomfortable to engage in the activities that make life happy and meaningful‚ that pain requires treatment‚ even if the patient only rates it a three out of 10.

Communicating with the Healthcare Team
A caregiver who has gathered information should then pass it on to the physician immediately. Do not wait until the next scheduled visit to seek help. “Most physicians really want to know‚” says Dr. Staats. “They’re in this field because they want to help patients. So they would be upset if a patient waited a month with pain scores of 10 out of 10 because they didn’t want to bother the doctor.”

“Go with the data‚ advises Dr. Miaskowski. “Say to the physician ‘On a scale of zero to 10‚ for the past two weeks this pain has been a nine. I can’t go to work; I can’t sleep; I’m depressed. We have to do something to manage this pain.” That’s a pretty compelling argument.”

When the physician proposes a treatment plan for the pain‚ be sure everyone understands its goals‚ its risks‚ and its benefits. Some of the basic questions to be addressed include:

What is causing this pain? Different types of pain require different types of treatment. Pain caused by nerve damage is not the same as that caused by an invasive tumor or bone metastases. In addition‚ not every pain in cancer patients is caused by cancer. “Plenty of patients have pain not because of their cancer but because of some other chronic medical condition‚” says Dr. Miaskowski. “Just because you have cancer doesn’t mean your arthritis is going to go away.”

What can be done to relieve it? There are usually several possible treatment options for a given pain syndrome.

How often should this medication be taken? Timing is critical for effective pain management. Too often‚ patients wait until pain has already become unbearable to take their medication. “When someone has pneumonia‚ we start them on an antibiotic and try to maintain a constant blood level of that antibiotic. We don’t wait for the fever to spike and then start an antibiotic‚ wait for it to spike again‚ and then start another antibiotic. We’re trying to knock out the bug‚” says Dr. Staats. “That’s what we’re trying to do with pain. We’re not waiting until the pain scores go above 10 when we have to give an exceedingly high dose‚ which makes patients sleepy and then puts them on a roller coaster of pain and sedation.”

Will this medication have side effects? “We don’t have a perfect analgesic‚” notes Dr. Miaskowski. “I wish we did.” Every treatment carries a risk of side effects‚ some of which have the potential to interfere with the patient’s quality of life almost as much as the pain. Patients should know what to expect‚ so they can weigh the potential risks against the potential benefits.
› What can be done to manage these side effects? Some drug side effects can be prevented or mitigated by coadministration of other medications. For example: “Patients receiving opioids [morphine‚ codeine‚ or similar drugs] definitely need a concurrent drug that prevents them from developing constipation‚” says Dr. Foley. “And they may also need a drug that prevents them from becoming too sedated.”

Is there any way to enhance the effects of this treatment or help reduce the risk of side effects? The creative combination of medications with different modes of action can often reduce the risk of side effects‚ as lower doses are needed than with single-drug therapies. In addition‚ changing the route of administration can sometimes dramatically improve efficacy. This is particularly true with opioid analgesics. “Interventional therapies can decrease the level of side effects from opioids‚” says Dr. Staats. “For example‚ if you put people on intrathecal opioids‚ you can achieve the same or better levels of pain relief with a lower side effect profile.”

What should I expect after taking this medication‚ and how long will it take to happen? Antidepressants and anticonvulsants will take longer to have an effect than analgesic medications. Similarly‚ medications in patch form take longer to reach steady state than those delivered via other means. Know the goals of the therapy so you can know when those goals have not been met.

Who should be called if the pain is not adequately relieved in time? Inadequate pain relief is a treatment failure‚ and like all treatment failures‚ it should be addressed immediately. Even if the physician is difficult to reach‚ there should always be some member of the treatment team available and qualified to adjust the pain treatment plan. “Oncology nurses often have a little bit more time and‚ in many cases‚ are a little bit better educated about pain control issues control than other members of the treatment team‚” says Dr. Miaskowski.

What can we do if this treatment doesn't work? “Remember‚ there is always another option if a given pain treatment plan fails‚ whether it is changing the dose‚ changing the medication‚ using a different route of administration‚ initiating more invasive therapy‚ or a combination of the these techniques. If a physician is unsuccessful at managing the patient’s pain‚ do not hesitate to ask for a referral to a pain specialist. “We’ve trained a lot of physicians‚ and there are a lot of good pain doctors out there‚” says Dr. Staats. “A good strategy would be for the oncologist to hook up with a pain doctor when things aren’t under control.”

Once Treatment is Under Way
In almost every other aspect of cancer treatment—be it surgery‚ chemotherapy‚ or radiation—patients follow the lead of their oncologists and other members of the treatment team. But when it comes to pain‚ it is the patient who is in charge.

“Pain is one of the last things patients can control‚” notes Dr. Levy. “And that in itself reduces their suffering‚ because they get some sense of mastery and control over their condition.”

Ideally‚ every pain treatment plan is a work in progress‚ evolving and changing as the patient’s condition changes over time. “There’s a huge amount of negotiation that goes on with pain treatment‚” says Dr. Levy. “It’s a balancing act of comfort and function.”

Browning says she discussed pain at every follow-up visit‚ often taking her sister with her just to be sure she was hearing everything correctly. Other postsurgical pain brought on by treatment was successfully treated‚ but not until she had tried a few different medications.

“When we found a medication that did work‚ I developed a rash‚” Browning explains‚ “so my doctor suggested I take it with Benadryl® [diphenhydramine]. That combination worked beautifully.”

Getting the pain under control had a profound impact on the quality of Browning’s life. “When I got the right balance of pain control‚ I could at least go to work‚” she says. “I was still tired‚ but at least I could go to church‚ go out to eat‚ enjoy some activity again.”

For some patients‚ the absolute absence of pain may not be a reasonable goal‚ particularly in late-stage cancer. “Pain relief is a different concept than no pain‚” explains Dr. Levy. “We can certainly give patients a level of comfort and function that’s acceptable to them‚ but to state that we can eradicate all pain is unrealistic.”

“The best way to judge treatment success‚” says Dr. Miaskowski‚ “is if the pain is tolerable for that individual‚ and if the person can do the activities he or she wants to do.” The important thing‚ say the experts‚ is to keep the lines of communication open and to enlist the aid of the treatment team whenever pain or side effects are not adequately controlled.

When it comes to setting goals for pain control‚ Browning says a self-evaluation is the best.

“You have to sit down and look at how you live your life‚ what makes you happy‚ and figure out how you can continue to do that while going through this difficult time‚” she advises. “I knew how miserable I would be being home‚ so I decided the best thing for me was to keep working as much as I could. My pain was much less when I knew I could go and do something. Distraction is wonderful.”