For Any Cancer Diagnosis
Q. My aunt is on morphine and acetaminophen for advanced cancer. What else can we do to ease her pain?
If you feel that your aunt’s pain is not being adequately managed by medication she is currently taking, it is important that you consult with her medical team.
Excellent pain management services and a wide array of pain medications are available. It may be that all that’s needed is for her doctor to change the dosage or frequency of her medication.
However, your aunt’s medical team must continually be informed of her pain level. Don’t assume that they are aware of the level of pain she is experiencing. Doctors often have to rely on their patients and caregivers to tell them whether or not the medications are working for them.
If your aunt’s medical team is not asking about her pain or pain management, you should speak up and raise your concerns with them. If they feel that there is nothing they can do to ease her pain further, consider ask them for a referral to a pain clinic or pain specialist.
For more pain management information, please read our publications:
- Controlling Cancer Pain: What You Need to Know to Get Relief
- Opening the Door to Effective Pain Management
Additionally, you will find detailed information about pain management in The Caregiver Resource Directory.
Q. My mother has been struggling with pain since she was diagnosed with cancer. What can she do?
Both you and your mother should speak to her medical care team about the pain she is experiencing and ways to manage it. Her doctor needs to know about her level of pain and must continue to reassess it with each visit. If you have already spoken to the medical team, but feel that the pain has not been adequately managed, ask your doctor for a referral to a pain clinic, where you can consult with a pain specialist whose sole concern is controlling and managing the pain associated with cancer. Remember, pain management is an important part of cancer treatment, so speak up!
CancerCare publications that address pain include:
- Controlling Cancer Pain: What You Need to Know to Get Relief
- Opening the Door to Effective Pain Management
Other resources include:
Q. I'm worried about taking pain medications. Could I become addicted?
Fear of becoming addicted is common among people who are prescribed medications for cancer pain. This fear can keep some patients from talking with their doctor about the pain they are in. It can also keep them from following their doctor’s orders about when and how often to take their medicines. Some people may even skip some of their doses because they are afraid of “getting hooked.”
It is true that you may experience physical symptoms of withdrawal when your pain medication is stopped. Some common symptoms might include feelings of irritability and agitation. This is called physical dependence, and it is a normal response to taking a pain medication, not a sign of an addiction. Addiction is a psychological, or emotional, dependence on a drug.
Sometimes our bodies can become used to the medicines that we are taking. This is described as building up a “tolerance” to your medication. It means that the pain medications that used to work may no longer help relieve your pain.
Building a tolerance to your pain medications is usually not considered a problem. Your physician can simply change the dosage of your medication or prescribe a new medication for you. Again, it is important that you keep your doctor informed as to what works and what doesn’t in easing your pain. Your physician will work very closely with you when prescribing your schedule of pain medication.
It’s important to talk with your doctor about any concerns or fears you may have. This will help ensure that pain medications are used safely and effectively.
Q. How do I talk to my doctor about the pain I am experiencing?
Pain is a message your body sends saying that it needs help. Pain medications can offer you relief. But first, you’ll need to tell your doctor how you feel. The more accurately you can describe your pain to your doctor, the better your doctor will be able to help you. Rating your pain on a scale from zero (no pain) to 10 (worst pain) can be an effective way of measuring and describing your pain to your doctor.
To make sure you receive effective pain management:
- Tell your doctor immediately about any pain you are experiencing. NEVER allow your pain to build up over time. Pain needs to be monitored and assessed at each doctor visit.
- Write down any questions you may have about your pain and how to manage it BEFORE your visit to your doctor. And, be sure to write down the answers your doctor gives you.
- Bring someone with you to your appointment. Having another person there who can give you emotional support, ask questions, and remember information can help you better address and manage your pain.
- Be specific and describe your pain in detail to your doctor. Don’t assume your doctor knows how you feel. Tell your doctor what your pain feels like, when it is at its worst, and when it appears to ease up, if it does.
- Keep a pain diary or journal. Record such things as when and where the pain occurs, what makes the pain worse, what provides relief, and how the pain affects your quality of life.
Remember, you are the expert on your pain, and your doctor is there to help you. Effective pain management is about teamwork. Get involved and be an active participant in your care.
Q. My father's oncologist has made a referral for him to see a pain specialist. Is this palliative care? He seems resistant - how do convince him that it's a good idea? And is palliative care covered by insurance?
A distinction needs to be made between a referral to palliative care and a referral to a pain specialist. Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the pain, symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a team of doctors, nurses, social workers and other specialists who work together with a patient’s own doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
Palliative care physicians are specially trained in complex pain management resulting from serious illnesses such as cancer, so they are experts in administering managing opioids and other potent pain medications. Pain management specialists usually treat pain that does not result from complex, serious illness. They are often anesthesiologists if they are physicians, or nurse anesthetists if they are nurses.
Palliative care specialists bill insurance just like oncologists, cardiologists or any other specialist. Your father might have received a referral to either a pain specialist or a palliative care team. Either way, it is important that he follows up with the referral for his own physical and emotional well-being. Pain associated with cancer is complicated because the causes of pain can be variable and change from day to day.
For more information, please read our publications:
Q. I am the caregiver for my elderly father who has cancer. My father’s cancer has spread to his bones and he's having pain. What can I do to help relieve his pain?
Your father is fortunate to have a caring family caregiver who wants to help him get relief from his pain. Unrelieved pain may cause sadness, decreased mobility, and irritability. Treating cancer pain is essential to your father’s well being and I offer these suggestions:
- Ask your father if he is willing to discuss his discomfort and pain with his health care team and if he wishes you to accompany him on his next appointment.
- With your father’s approval, schedule an appointment as soon as possible.
- Patients are often asked to describe their pain using a Pain Scale of 1-10 with 10 being the greatest amount of pain. His health care team will ask a number of questions to help identify the type of pain, examine the area where the pain is most bothersome, and order imaging tests to further determine the source of the pain.
- Pain is effectively treated by over the counter as well as prescription medications. Most cancer hospitals have multi-disciplinary Pain Teams to recommend the best approaches to manage pain.
- There are a number of prescription medications; some are delivered intravenously, to treat bone metastases. These treatments can also reduce pain.
CancerCare Connect booklets and fact sheets are also very informative:
- Caring for Your Bones When You Have Cancer
- Controlling Cancer Pain: What You Need to Know to Get Relief
The National Cancer Institute’s Cancer Information Service is a resource for additional information. Call 1-800-4-CANCER or visit www.cancer.gov.
Q. My husband has advanced cancer, and he has severe pain in his lower back and legs. What does that mean?
Pain is a message your body sends saying that it needs help. Let me say that although your husband may be experiencing increased pain, this does not necessarily indicate that his cancer is becoming worse. It is very important to communicate with his medical team so they can explore this further and take appropriate action to address his pain. There are various pain medications that can offer relief. Pain management works best and is most effective when there is a team effort. The more accurately you both can describe the pain to his doctor, the better his doctor will be able to help him. Rating pain on a scale from zero (no pain) to 10 (worst pain) can be an effective way of measuring and communicating levels of pain.
To make sure he receives effective pain management:
- Tell his doctor immediately about any pain he is experiencing. NEVER allow pain to build up over time. Pain needs to be monitored and assessed at each doctor visit.
- Write down any questions you may have about his pain and how to manage it BEFORE you visit his doctor. And, be sure to write down the answers his doctor gives.
- Accompany him to his appointment. Having another person there who can give him emotional support, ask questions, and remember information can help him better address and manage his pain.
- Be specific and describe his pain in detail. Don’t assume his doctor knows how he feels. Make sure to describe in detail what his pain feels like, when it is at its worst, and when it appears to ease up, if it does.
- Keep a pain diary or journal. Record such things as when and where the pain occurs, what makes the pain worse, what provides relief, and how the pain affects his quality of life.
Remember, pain is what the person says it is. Your husband is the expert of his own pain and his medical team is there to work with you both.
You’ll find additional information in our publications:
Q. My pain seems to be increasing. How do I tell my doctor without sounding like a "seeker"?
Fear of becoming addicted or becoming a “seeker” is common among people who are prescribed medications for cancer pain. Unfortunately, this fear can keep some patients from talking with their doctor about the pain they are experiencing. It can also prevent them from following their doctor’s orders about when and how often to take their medications. Some people may even skip some of their doses because they are afraid of “getting hooked.” However, if you feel that your pain is increasing, it is important that you consult with your medical team. Keep in mind that pain is what the person says it is. You are the expert when it comes to your own pain. A simple change in the dosage or frequency of your medication may be all that is necessary to ease your pain.
Although a possibility exists that you may become physically dependent on your medication, which is a normal response to taking a pain medication over a period of time, this nonetheless is not a sign of an addiction. Sometimes our bodies can become used to the medicines that we are taking. This is described as building up a “tolerance” to medications. It means that the pain medications that used to work may no longer be working to help relieve your pain. It’s important to talk with your doctor about any concerns or fears you may have surrounding this. Don’t assume that your doctor is aware of the level of pain you are experiencing. Doctors have to rely on their patients to inform them whether or not the medications are working. Keeping your doctor informed will also help ensure that your pain medications are being used safely and effectively. If you feel that your doctor is not addressing your pain to your satisfaction, you might consider asking him/her for a referral to a pain clinic or pain specialist.
For Breast Cancer
Q. I was diagnosed with breast cancer in late 2010. I received 6 rounds of chemotherapy, and I still experience severe knee pain. Is this pain related to the chemotherapy and when will it end?
It is not uncommon for people who have undergone chemotherapy and other cancer treatments to experience long-term side effects. For example, certain breast cancer treatments such as chemotherapy and hormonal treatments may contribute to bone loss, which could cause knee pain (view our bone health resources). Your body’s reaction to cancer treatment depends on factors such as treatment length, dosage prescribed, and your personal health history. Most side effects are temporary, but some can last for some time after treatment is over.
It is important to discuss your symptoms with your medical team so you can find some relief. Are they aware of your knee pain? I would strongly encourage you to tell your doctor about your concerns if you haven’t already. He or she is in the best position to investigate whether your pain is chemo-related. In the event that your doctor is not accessible, your nurses and oncology social workers are great resources. Nurses have a wide range of skills and are usually in charge of implementing the plan of care your doctor has set up for you. They are trained to administer medication, monitor side effects, and educate you on the medications you are receiving. Oncology social workers are professionally trained to counsel people affected by cancer and help them access practical assistance. They can also act as a liaison between you and members of your medical team. CancerCare offers a free podcast with tips to help you plan for your post-treatment medical appointments, Communicating With Your Health Care Team After Treatment: Making the Most of Your Visit.
Finally, many people find it helpful to keep a record of side effects to bring to your next appointment. You can create a daily journal that details information such as when the pain occurred and for how long, how strong was the discomfort/pain using a scale of 1-10, and how the side effect impacts your daily activities. Learn more about our resources on coping with pain.
For Colorectal Cancer
Q. After two surgical operations on my rectum and colon and receiving chemotherapy, I have numbness and reduced sensitivity in my fingers and feet. My doctors suggested Gabapentin, but it gave me problems with my sense of balance. Is there anything else I can do to lessen these symptoms?
The numbness and reduced sensitivity in your fingers and feet is called peripheral neuropathy, which is nerve damage that often results from certain chemotherapy treatments (e.g., oxaliplatin). It is sometimes referred to as the “glove and stocking sensation,” as it feels similar to wearing gloves or thick stockings on your hands or feet.
Certain medications can reduce the pain and annoying physical sensations that accompany neuropathy while the nerves repair themselves. Gabapentin relieves the pain of neuropathy by changing the way your body senses pain. It is meant to control your condition but will not cure it. Fortunately, there are several other types of medications for neuropathy, including anticonvulsants, antidepressants, local anesthetics, and opioids, that can be taken individually or in combination. Work with your doctor to find the right approach for you. Keep in mind that it can take one to two years or more for symptoms to go away completely.
Here are some tips that may help you manage and cope with the symptoms of peripheral neuropathy:
- Avoid drinking alcohol, which can damage nerves.
- Wear sneakers or shoes with “rocker bottoms” that allow the feet to roll while walking, provide better traction and can relieve some of the pressure on the soles.
- Remove throw rugs from your home to reduce the chance of slipping and falling.
- Rather than stand, sit down while doing activities such as drying your hair, applying makeup or preparing food.
- Use hand tools, kitchen utensils, and even toothbrushes and pens with wider grips, to make them easier to hold.
- If you have diabetes, manage your blood sugar level very carefully, as high levels can have a negative impact on nerves.
- Join a support group to learn how others lived with, and overcome, the challenges of neuropathy.
- Consult a psychiatrist, physical therapist, or occupational therapist who can provide guidance tailored to your specific circumstances.
- CancerCare has several resources to help you learn more about living with neuropathy. Listen to our Connect Education Workshop podcast, Understanding Peripheral Neuropathy.
For additional help and support, visit the The Neuropathy Association’s website.
For Head and Neck Cancer
Q. What are the long term permanent side effects in my throat from radiation?
Depending on exactly where you receive radiation, a number of side effects can occur either on a temporary, long-term, or delayed basis. They include changes in sensation (the ability to feel), secretions (dry mouth), taste, and range of motion (when tissue hardening restricts movement and posture). These side effects can then affect key physical functions associated with the mouth and throat, such as speech and, especially after radiation, swallowing.
Whether these side effects turn into a chronic condition (or lead to other problems) often depends on how soon they are recognized and treated. Certain precautions such as addressing dental issues, can be taken before treatment begins to reduce—if not outright prevent—long-term side effects. A publication from the National Cancer Institute, Oral Complications of Chemotherapy and Head/Neck Radiation, provides an overview of possible treatment side effects and how to manage them.
Other helpful resources include these CancerCare podcasts:
For Lung Cancer
Q. I have stage 4 non-small cell lung cancer and now am receiving Tarceva. I'm trying to prepare for the future by exploring hospice and want support for my husband. Do you know what kind of pain I might expect?
There is no easy means of determining how late-stage lung cancer may progress. At times the process can be relatively benign and pain free; at other times, it may cause the person with cancer to deal with discomfort and pain. You have already identified one of the most appropriate resources for managing your situation – hospice care.
Hospice provides some of the best palliative care available and focuses on the patient’s physical, emotional and spiritual comfort. We encourage patients and family members dealing with late-stage cancer to contact local hospices as soon as possible. This gives patients and their loved ones the opportunity to develop a relationship with staff and ask questions (such as how pain and symptoms can be managed) and to determine what services could be helpful. Connecting with hospice often times results in peace of mind for both patient and family members, as needs can be assesed, questions answered, and important next steps identified.
For more information about hospice and end-of-life care, please consult the National Hospice and Palliative Care Organization’s website, Caring Connections.
Another resource is our publication, “Caregiving at the End of Life”. And remember that CancerCare’s professional oncology social workers assist lung cancer patients and their loved ones in situations similar to yours and can help them navigate their way through end of life care.
Q. I am 67 years old and have had non-Hodgkin's lymphoma for 7 years. I have decided not to receive further treatment. What will happen as I progress? Will I have pain?
You have made a difficult decision to change the focus of your treatment from curative to comfort measures. No doubt this decision was made after careful consideration and consultation with your doctors and members of your support team.
Most people report that they are not as fearful about dying as they are about the possibility of experiencing pain and distress. There are many ways to address physical pain, and you can learn specific ways to describe your pain to your treatment team in our booklet, Controlling Cancer Pain: What You Need to Know to Get Relief. Hospice care is an option when a disease becomes terminal and a person has a prognosis of six months or less. The focus of hospice services is to create the best quality of life for a patient by treating his or her physical, emotional and spiritual needs, as well as supporting family needs.
Even at this point in your illness, the importance of hope can not be dismissed. Hope is that balance between positive attitude and expectations for the future. Hope can continue to nourish you, and you can nurture hope through the way in which you continue to live your life. Settling old problems and practical affairs will give you peace of mind. Make plans with family and friends as you are able to continue to engage in the activities that you enjoy. Focusing on the purpose and goals of each day will set up an achievable plan and completing what you can each day will give you satisfaction that you have done your best.
The National Hospice and Palliative Care Organization’s Caring Connections website offers information about living with a serious illness and pain management. We offer a fact sheet, Your Health Care Team: Your Doctor Is Only the Beginning, that outlines professionals who may be available to help you.
For Pancreatic Cancer
Q. I've been recently diagnosed with pancreatic cancer and want to know if the back pain I am experiencing worsens over time? How can I manage it?
Unfortunately, pain is very common with a diagnosis of pancreatic cancer. The good news is that often the pain lessens as the chemotherapy and/or radiation works to shrink the tumor. Speak with your oncologist or radiologist about how to best manage your pain. There are now a variety of pain medications that can lessen your pain without harsh side effects.
Prepare for the discussion with your doctor by keeping track of your pain by writing down:
- When and where you experience pain
- What is the intensity of your pain (use a scale of 1 to 10, or verbal scale of mild, moderate, severe)
- Does anything make your pain worse?
- Does anything relieve your pain?
- How is pain affecting your everyday life?
Because pain can be difficult to describe, it might be helpful to have friends or family share their assessments as well. It’s always a good idea to bring someone with you to any appointment; another set of ears can help reduce confusion. I recommend that you bring a list of questions to the appointment and have someone write down the doctor’s responses. People sometimes even bring a recording device – just make sure to ask the doctor for permission.
For more information read our publications, Controlling Cancer Pain: What You Need to Know to Get Relief, Communicating With Your Health Care Team, and “Opening the Door to Effective Pain Management”.
Visit the American Pain Foundation for information and resources to locate a pain specialist. They also offer an online community, PainAid. And finally, the American Pain Society offers useful information.