Questions and answers on breast cancer
Guideline 10: The management of persistent pain after breast cancer treatment

See also: 

I've had breast cancer treatment, and now I'm having pain. Does this mean the cancer has come back?

Pain after breast cancer surgery and treatment may occur for several reasons. In many cases, the pain may be caused by something that has nothing to do with breast cancer or its treatment. It may also be a result of the surgery, radiotherapy or chemotherapy you have experienced. Another possibility is that breast cancer has returned. If you have persistent pain at any time, you should consult your physician for assessment and advice. Additional investigations may be required. Regardless of the cause of pain, effective treatment is available.

What types of pain may come from surgery?

One cause of pain is the "postmastectomy syndrome." This occurs because removal of a lump can damage nerves in the area. This problem is more common after a total mastectomy (removal of the whole breast) but can also follow a lumpectomy (removal of just the cancer), especially if you have also had lymph nodes removed in the armpit area. Usually, this type of pain is not severe and will gradually improve. Swelling of the arm (lymphedema) is another condition that can cause discomfort and pain. Removal of lymph nodes from the armpit during surgery can damage the channels that drain lymph from the arm. This leads to swelling and can be painful for some patients (see guideline 11).

Could my pain be related to anticancer drugs?

Some drugs may cause painful conditions, including bladder inflammation (cystitis), numbness and tingling (peripheral neuropathy), mouth ulcers (mucositis) and aching joints. Taking drugs intravenously may also cause painful inflammation of the veins (phlebitis).

What about pain caused by cancer?

Cancer that grows in the bones may cause pain. If you have new or increasing pain in the bones, you should discuss this with your physician. These symptoms could occur because breast cancer has spread to the bones. Although the bones are the most common site in which cancer returns, pain can also occur from cancer spreading to nerves and other organs. One type of nerve pain is called "brachial plexopathy." A burning or stabbing pain is felt in the arm, shoulder or hand when these areas are touched, or they may feel "different" — either numb or very sensitive. There may also be weakness in the arm, especially if the pain has been going on for a long time. Although this kind of pain may rarely be a side effect of radiotherapy or surgery, this pain may mean that cancer has come back in the lymph nodes behind the collarbone. Careful investigation may be necessary to rule out cancer.

Should medication get rid of all my pain? Regardless of the cause of pain, anti-pain medication prescribed by your physician can usually provide good pain control. If the pain is caused by cancer, anticancer treatment such as radiotherapy or chemotherapy may treat the cause of the pain and reduce the need for pain medications. It is important not to ignore pain or hope you will get used to it. People do not get used to pain. Putting up with pain can make it even harder to control later with medication. The goal of pain medication is to control pain as rapidly and completely as possible. This may require adjusting the type and amount of your pain medication. Remember, only you can report on your pain, and you need to let your doctors know if your pain is not controlled. If the pain is persistent or chronic, you will need to take pain medication in regular doses around the clock. Additional doses may be necessary in case of "breakthrough" pain between regular doses. If you often have breakthrough pain, your regular dosage may need to be adjusted or another medication prescribed.

What kind of medication should I be taking to get rid of the pain?

If your pain is mild to moderate, painkillers you can buy without a prescription, such as acetylsalicylic acid (ASA), acetaminophen and ibuprofen (part of the family of drugs called nonsteroidal anti-inflammatory drugs), may be effective alone. You can choose the brand you are most familiar with, or ask your doctor or pharmacist to recommend one. Ibuprofen and ASA are effective pain relievers, but they can have side effects. They may aggravate asthma and cause stomach ulcers or kidney damage. If you have stomach problems, there are new medications in the nonsteroidal anti-inflammatory group (for example, Cox 2 inhibitors) that may reduce your chances of having side effects. If drugs like ASA, acetaminophen and ibuprofen alone do not control the pain, do not take more than the recommended dose. Higher doses will not help the pain but will increase your risk of having side effects. If these medications alone are not effective, your doctor can prescribe stronger medications. Opiates are a strong pain reliever. Several types are available. Your physician can work with you to select an opiate that is most effective for you (for example, codeine or oxycodone). Opiates are often most effective when they are prescribed with drugs such as ibuprofen, acetaminophen or ASA. Many types of pain may require strong opiates such as morphine, hydromorphone or fentanyl. Any of these drugs may be effective depending on the patient and the situation. Usually a short-acting opiate is prescribed on a regular schedule (for example, every 4 hours). The dose taken will be increased every day or so until pain is controlled. Some patients find that taking pain medications frequently is difficult. If your pain is well controlled, then you can consider switching to a long-acting opiate, which some patients find more convenient. Several long-acting preparations are available. Long-acting tablets are taken twice a day, and a long-acting patch, which allows pain medicine to be absorbed through the skin, works for 3 days. You should discuss with your physician whether one of these approaches is right for you. Occasionally, some patients will need to take opiates by injection under the skin instead of by mouth. As well, suppositories can be used in some patients. Your physician can advise you which is the best option depending on your situation.

If I take opioids, what side effects should I watch out for?

All opioids can cause constipation. Laxatives should always be prescribed along with them. You will need to take the prescribed laxatives regularly to prevent constipation. Nausea and vomiting may occur when you start taking an opioid, but these symptoms often disappear completely after a short time. In the meantime, there are many drugs that can control these side effects, such as dimenhydrinate (Gravol). You can buy these drugs without a prescription under several brand names. Additional options to prevent or treat nausea are available by prescription. Sedation (feeling sleepy) or confusion can be a problem, especially for elderly patients. No one should drive or use potentially dangerous equipment for 3 to 5 days after starting opioid therapy or after any change in dosage. The drowsy feeling usually disappears with time. Although these are the most common side effects, individuals vary a great deal in their reactions to opioids. This means that a particular side effect may disappear entirely if you switch from one opioid drug to another. For example, if you have an unpleasant reaction to morphine, your doctor can try other opioids such as hydromorphone, oxycodone or fentanyl. The effectiveness of your medication should be re-evaluated after 24 hours every time you switch from one opioid to another, change your dosage or change the way you take the drug (for example, if you switch from tablets to injections). It is important to report side effects to your doctor. You should not stop taking opiates because of side effects without first discussing it with your doctor.

Won't I get addicted to morphine or some of these other drugs?

True addiction ("psychological dependence") is extremely rare when opioids are taken for cancer pain. Much more commonly, people who are not receiving enough medication may seem addicted simply because their continuing pain requires higher doses or switching to a stronger medication. Rarely, you may develop "tolerance" to the pain medication. With tolerance, your body gradually becomes resistant to the medication and needs increasing amounts to get the same relief. Fear of developing tolerance is never a good reason to avoid taking enough pain medication to be pain free. Remember, there is no maximum dose for opioids, and the right amount to take is the amount that relieves your pain. If tolerance occurs, switching to another type of pain medication will relieve the pain. Anyone who takes an opioid for longer than a few weeks may become "physically dependent." This means that your body gets used to the drug, and withdrawal symptoms will appear if it is suddenly stopped. When the cause of the pain improves and an opioid drug is no longer needed for pain, it should be reduced gradually over a couple of weeks.

Are there other drugs that can be used?

Some drugs that are primarily used for other conditions have also proved useful in the relief of pain caused by cancer. These drugs are taken together with the pain medications already mentioned. Among these are corticosteroids, tricyclic antidepressants, anticonvulsants, some local anesthetics and bone-strengthening drugs called bisphosphonates. In prescribing any of these drugs, your doctor should explain the possible side effects.

Are there other ways to help me deal with pain? There are various methods that may help, including exercise, electrical stimulation of nerves, acupuncture, massage, vibration and the application of heat or cold to the overlying skin. However, deep-heating methods such as diathermy and ultrasound should be used with caution, since they may help cancer cells to grow. Compression therapy may help control the swelling and discomfort caused by lymphedema. There are also many alternative therapies such as meditation, biofeedback, prayer, visualization, yoga, Qi Gong, Tai Chi, therapeutic touch, Reiki, healing touch, homeopathy and herbal medicines. Although you should be aware that there is a lack of scientific evidence supporting these methods, there is also no proof that they do not work. In fact, many patients report significant benefit from their use. Remember, too, that pain always has a psychological element, and pain can be worse if you are depressed, tired or anxious. For this reason, you may find real benefit in joining a support group or trying psychological techniques such as hypnosis.

What if I have tried everything, including medication, without satisfactory pain relief?

This kind of stubborn pain happens very rarely. If possible, you should see a pain specialist who can use a variety of surgical measures to block the nerves involved.