- Caring for the Patient With Cancer at Home: A Guide for Patients and Families
- Anxiety, fear, and emotional distress
- Appetite, poor
- Blood counts
- Blood in stool
- Blood in urine
- Fluids (lack of) and dehydration
- Grooming and appearance
- Hair loss
- Leg cramps
- Mouth, bleeding in
- Mouth dryness
- Mouth sores
- Nausea and vomiting
- Scars and wounds
- Shortness of breath
- Skin color changes
- Skin dryness
- Skin (pressure) sores
- Sleep problems
- Stomas (or ostomies)
- Swallowing problems
- Treatment at home
- Tubes and IV lines
- Weight changes
- When death is approaching
- To learn more
When people say they are having pain, it usually means they are hurting somewhere. But it can also mean that they just can’t get comfortable. They could be feeling bad in general, not in any one place. The feeling of pain can be worse if a person is sad, anxious, or depressed. Some people have a hard time talking about their pain. This might be because of the way they were brought up, the way people in their family usually express themselves, or just because that’s the way they are. In general, the way they talked about pain in the past, before the illness, will be the way they talk about it now.
Even severe pain can be controlled very well by combinations of medicines that can be taken by mouth. These combinations usually include opioids (OH-pee-oyds), such as morphine or codeine. Some people don’t want to use these pain medicines because they fear they will become addicted. But people with cancer who have never abused drugs do not become addicted or use the opioid pain-relieving drugs for pleasure. Their bodies can get used to the pain medicine after a time, so the dose may need to be increased to get the same pain relief. This is a common sign of opioid tolerance, and it’s expected. But in the setting of cancer pain, it’s not a sign of addiction.
Pain medicines work best for chronic (long-term) pain if they are used on a regular schedule before the pain becomes severe. It takes more medicine to control severe pain than milder pain, so it’s best to treat it when it first starts and regularly after that. If the cause of the pain can be treated, the need for medicine will slowly decrease or disappear as the cause is treated. The doctor should adjust the dose and schedule as the patient’s needs change.
If you have pain from cancer that has spread or other long-term cancer pain, it can exhaust you. This type of chronic or long-term pain can keep you from doing things that you want and need to do. Even with around-the-clock pain medicines, pain often “breaks through” between doses. Breakthrough pain usually calls for a second pain medicine that you can safely take in addition to your regular pain medicine. Don’t be surprised if it takes more than 2 medicines to control your pain. Help your doctor keep your pain under control by taking pain medicines as prescribed and keeping your doctor informed about your level of pain.
What to look for
- Pain that doesn’t seem to go away or that goes away and comes back before your next dose of pain medicine is due (This might mean that your medicine plan needs to be changed.)
- Trouble sleeping
- Lack of interest in things you used to enjoy
- Worry about things that had not caused concern in the past
- New areas of pain or a change in your pain
- Lowered ability to move around or less physical activity
What the patient can do
- Talk with your doctor or nurse about your pain – where it is, when it began, how long it lasts, what it feels like, what makes it better, what makes it worse, and how it affects your life.
- If the prescribed pain medicines don’t work as expected, let your doctor or nurse know.
- Rate your pain using a pain rating scale, such as 0 = no pain to 10 = the worst pain you can imagine. You can use this scale to explain your pain to others.
- Take your pain medicine exactly as prescribed. (For chronic pain, medicine should be given around the clock on a schedule, rather than only when pain is severe.) Check with your doctor if this schedule needs to be adjusted.
- As the pain is relieved with medicines, increase your activity level.
- Do not wait until the pain is severe before taking medicine for breakthrough pain.
- Avoid suddenly stopping any of your pain medicines. Instead, reduce the dose slowly as the pain decreases. Talk with your doctor, nurse, or pharmacist before you do this, or if you have questions.
- Some people feel nauseated even when they are taking the right dose of pain medicine. If your pain medicine makes you feel sick, ask your doctor to change it or to give you something to control the nausea.
- Some pain medicines make you sleepy or dizzy. This often gets better after a few days, but you may need help getting up or walking. Don’t try to drive or do anything dangerous until you are sure of the effects.
- People taking opioid pain medicines are normally given laxatives or stool softeners to prevent constipation, a common side effect.
- Keep track of any other side effects you notice. Discuss them with your doctor or nurse.
- Avoid crushing or breaking your pain pills unless you check with your doctor, nurse, or pharmacist. If medicines are in time-release form, taking broken pills can be dangerous.
- If pain medicines are not keeping your pain under control, talk with the doctor about other measures. If you keep having trouble, ask to see a pain specialist.
- Keep at least a one-week supply of pain medicines on hand. Most pain medicines can’t be refilled by phone, so you’ll need a written prescription.
What caregivers can do
- Watch the patient for signs of unrelieved pain. Ask the patient about pain if you notice grimacing, moaning, tension, or reluctance to move around in bed.
- Try warm baths or warm washcloths on painful areas. (Avoid areas where radiation was given.) If this doesn’t help, you can try ice or cool packs. Gentle massage or pressure might also help some types of pain.
- Watch for confusion and dizziness, especially after starting a new medicine or changing the dose. Help the patient walk until you know they can do it safely alone.
- Suggest enjoyable activities to distract the patient.
- Plan activities for when the patient is most comfortable and awake.
- Offer plenty of fluids and food with fiber.
- If the patient seems forgetful, help them track when pain medicines are due to avoid over- or under-dosing.
- Help the patient remember to take stool softeners or laxatives as the doctor suggests to prevent constipation. (See the section called “Constipation.”)
- If the patient is having frequent, severe pain, talk with the doctor about taking medicine around the clock. If pain “breaks through,” find out if there is another medicine to use between doses of the main pain medicine.
- If the patient is having trouble taking pills, talk with the doctor about medicines that come in liquids, lozenges, suppositories, skin patches, or other forms.
- Check with the doctor, nurse, or pharmacist before you crush or dissolve pain pills to make them easier to swallow. Some pills can cause a dangerous overdose if broken.
- Remind the patient that pain medicine, when used as directed, does not cause addiction.
- Talk with the doctor or nurse so that you understand which medicines are for pain and how each is to be used.
- Be sure that the patient has a list of all the medicines they are on, including pain medicines. This is even more important if unexpected medical problems come up.
- Know how to reach the doctor when the office is closed.If you help the patient use pain patches, be sure you know how to avoid touching the part with the pain medicine on it and how to dispose of used patches safely.
- Keep opioid pain medicines away from others, especially children and pets.
- When you are caring for someone with pain, plan time for activities you enjoy and take care of yourself. A support group for family members may be helpful.
Call the doctor if the patient:
- Has new or worse pain
- Can’t take anything by mouth, including the pain medicine
- Doesn’t get pain relief, or if the relief doesn’t last long enough
- Has trouble waking up, or if you have trouble keeping them awake
- Becomes constipated, nauseated, or confused
- Has any questions about how to take the medicines
- Develops a new symptom (for instance, is unable to walk, eat, or urinate)
For more in-depth information on pain management, call the American Cancer Society at 1-800-227-2345. You may want to ask for a copy of Pain Control: A Guide for Those With Cancer and Their Loved Ones. You can also find pain information on our website, www.cancer.org.
Last Medical Review: 11/05/2013
Last Revised: 11/05/2013