Pain is the body’s way of indicating to the brain that something is wrong. Pain may be acute or chronic. Acute pain is usually short-lived, may be the result of an injury and subsides when the injury heals. Chronic pain occurs over a long period of time and ranges from mild to severe. Pain from cancer may be chronic and may be caused by the tumor when it presses on organs, nerves or bone; blocks blood or lymph vessels; or blocks a hollow organ such as the intestines.
Patients who have cancer do not have to endure pain. They are entitled to, and should receive, aggressive pain management. In fact, management of chronic pain in patients who have cancer is essential. Chronic pain may result in anxiety and depression, interfere with healing, disrupt sleep, and curb the appetite, weakening the body’s immune defenses, which fight infection and disease. You can help your doctor assess your pain by clearly communicating what your pain feels like and by keeping a pain log or journal. Once your doctor knows the severity of the pain, he or she can determine the appropriate treatment. Most doctors use a pain treatment approach developed by the World Health Organization (WHO) called the WHO Three-Step Analgesic Ladder. An analgesic is a medication whose primary purpose is to relieve pain.
The World Health Organization Three-Step Analgesic Ladder
|STEP 2||Severe Pain
Strong opioid painkiller
With or without nonopioid drug
With or without adjuvant drug
|STEP 1||Moderate Pain
Mild opioid painkiller
With or without nonopioid drug
With or without adjuvant drug
Nonopioid pain reliever
With adjuvant drug
Pain medications may be given in various ways. Most are taken orally with good results. Other ways of giving pain medications are subcutaneously (i.e., by injection under the skin), through the skin using a transdermal patch, and rectally by the use of a suppository. Sometimes pain medications are given intravenously (injected directly into a vein). Sometimes they are given intrathecally (i.e., injected directly into the spinal canal).
Another method of delivering pain medication is patient-controlled analgesia (PCA). In PCA you control the amount of pain medicine you get by pressing a button on a computerized pump connected to a small tube in the body; patients cannot use more than the prescribed amount because the device is programmed for a maximum dosage. PCA is commonly used after pancreatic cancer surgery in the immediate postoperative period.
Adjuvant Drugs for Pain. Adjuvant drugs, which treat a variety of problems in addition to pain, are also commonly used to enhance the effectiveness of pain medications. Adjuvant drugs often have a greater effect than either nonopioid or opioid pain medications alone. Some provide pain relief by themselves. Typical adjuvant drugs include corticosteroids, anticonvulsants, tricyclic antidepressants and antianxiety medications.
Other Pain Control Measures. Many nondrug therapies may be useful to help control cancer pain. Doctors may suggest the use of heat therapy, cold therapy or physical therapy. Massage, hypnosis, acupuncture and emotional support groups and individual counseling may also be effective. These techniques, and others, may be used in conjunction with pain medications.
For pain that does not respond to other measures, a nerve block may be performed. A local anesthetic or an alcohol solution is injected into the nerve root of the celiac plexus using ultrasound or computed tomography guidance. This procedure is performed by an anesthesia pain specialist in an outpatient setting. The effects may last for 3 to 4 months. Sometimes a skilled surgeon will perform a neuroablation in which part of the pain nerve fibers are cut or destroyed. Radiation therapy can also be used effectively to relieve pain by shrinking tumors.
Pancreatic cancer may cause you to lose weight before or after your diagnosis. In addition, treatments may cause you to lose your appetite. However, maintaining a healthy weight will help with treatment. In fact, good nutrition is essential to control weight loss, maintain strength, and promote healing. Consulting with a nutritionist or a dietician may be helpful.
The following steps may help with nutrition management during pancreatic cancer treatment:
- For patients who feel bloated or are having difficulty eating larger meals, eat 5-6 small meals throughout the day; eating smaller amounts is easier for the body to digest and absorb and can minimize nausea.
- Pancreatic cancers, because they can block the pancreatic duct and damage pancreatic tissue, can reduce the flow of digestive enzymes to the intestines. Replacement pancreatic enzymes, available by prescription, can be taken by mouth at meal-time and can help with the digestion of food.
- Anti-reflux medications may reduce the sensation of food rising in the throat.
Besides addressing these key nutrition issues during pancreatic cancer treatment, additional suggestions for nutrition management include:
- Eat foods that contain healthy fat and avoid greasy, fried foods.
- Eat a balanced diet with fruits, vegetables, whole grains and proteins.
- Avoid excess sugar, sweets, and carbohydrates.
- Drink plenty of fluids to prevent dehydration.
- Exercise regularly, even if it is just a short walk.
- For underweight patients: relax restrictions on low-cholesterol and low-fat foods.
- For patients with a relatively stable or healthy weight: maintain weight with a balanced diet.
A diet high in calories and protein can help you keep your weight up. Regular exercise coupled with a balanced diet that avoids carbohydrates can improve survival, and give you strength for day-to-day activities.
High-calorie foods are:
- Dairy products: whole milk, butter, cheese, yogurt, and ice cream
- Honey, jellies and jams
- Granola and dried fruit
To these, add foods with protein:
- Nuts, seeds, wheat germ and peanut butter
- Meat and fish
- Nutritional drinks such as Ensure®, Boost® or other nutritional drinks
Cachexia is a common condition in later-stage pancreatic cancer patients. Cachexia causes muscle wasting, loss of appetite and unintentional weight loss. Patients experiencing cachexia might benefit from appetite stimulants such as omega-3 fatty acids, alone or in combination with other nutritional supplements.
To complement a balanced diet, emerging research demonstrates that preoperative exercise, or “prehabilitation,” can benefit patients who are receiving neoadjuvant treatment. Preclinical data from researchers at MD Anderson Cancer Center demonstrate that the prehabilitation program for pancreatic cancer patients at their facility could increase chemotherapy efficacy.
Nausea and vomiting. Nausea and vomiting are common side effects of treatments for pancreatic cancer and usually stop when treatment ends. Pancreatic cancer, itself, also may cause nausea and vomiting.
Preventing nausea will help you get the nutrition you need. You should eat foods that are easy to digest; avoid fatty foods; eat small portions; eat frequently; avoid smells that bring on nausea; eat warm, not hot, food; rest after eating to allow the food to digest; and wear loose-fitting clothing. If nausea persists, contact your doctor because anti-nausea medications can be prescribed.
Vomiting can be controlled very effectively with the use of drugs called antiemetics. Talk to your doctor if you experience vomiting after eating. If vomiting is severe or lasts for more than a few days, contact your doctor.
Constipation. Different things can cause constipation. It is a common side effect of pain medications (usually opioids). These medications reduce the motility (movement) of the intestines, making it more difficult to move the bowels, resulting in hard, dry stools. Your doctor may recommend that you begin taking a stool softener to help prevent constipation at the time that an opioid is prescribed. Other problems associated with cancer and cancer treatments can contribute to constipation, e.g., reduced activity, poor appetite and weakness. If you have constipation, notify your healthcare team as soon as possible.
It is very common to have a full range of difficult and mixed emotions throughout an illness. Some emotions related to being diagnosed with or having cancer are shock, disbelief, fear, anxiety, guilt, sadness, loneliness, depression, grief, uncertainty about your future and anger. These feelings may come and go and it is important to remember that they are normal feelings. Your family members and friends may also experience these feelings.
Working through these emotions is essential to successful coping. Because you may not be prepared for the unique stresses caused by cancer, you may need new ways of handling your emotions, thought processes, and behaviors. Talking with other people about your feelings, writing in a journal and finding quiet time can help you cope.
Feeling that you do have some control over your situation will make things easier. A large part of dealing with cancer is making decisions. Learning about pancreatic cancer will enable you to make informed decisions, and will help you understand that you do have choices. It is also important to focus on things that you can change, not on those you cannot change.
It may be difficult to be hopeful and have a positive outlook when you are ill and worried. However, hoping for the best possible outcome often provides the motivation to follow medical advice and take care of yourself physically, mentally and emotionally. Living in the present can help you focus on what is meaningful and enjoyable right now, rather than focusing on what you do not have or what you may lose. Feeling hopeless, powerless or like you have nothing to live for can be signs of depression and should be discussed with your healthcare team.
Sometimes, no matter how hard you try, you may have negative feelings that do not go away. They may be symptoms and signs of depression or anxiety. Being depressed is different from being sad. Depression takes over your whole life and causes emotional paralysis. Your family members and friends should be aware and take note of these symptoms.
Depression is common in patients with pancreatic cancer. Let your healthcare team know about your symptoms. Do not suffer needlessly. Seek out a mental health professional. Additionally, effective medications and other methods to treat depression are available.
Developing a Support System
As a patient, you can reach out to family and friends for emotional support to help you cope with your cancer diagnosis and treatment. Typically, family and friends will be eager to offer their help or support but may not know how to ask. Patients should ask for help (if needed) with daily activities such as running errands, helping with household tasks, assisting with child care or just being there to listen.
Not only does sharing with other people help you cope, but you can benefit from the experiences of other patients who are going through the same thing as you. They have a wealth of information about many aspects of cancer. Conversely, you may have an opportunity to help others cope with their disease by expressing your emotions or your experiences. You will find that what you are experiencing is normal and you may find alternate ways to cope with your diagnosis or how you are feeling.
Joining a support group (in-person or online) may make a positive difference for you. Finding new friends, especially others who have cancer, may help. They will understand how you feel and you can express your feelings to other patients with cancer in a way that you may not be able to express to your family or friends. Other patients can validate your feelings so you don’t feel isolated.
Remember that members of your healthcare team are also part of your support system. It is important to contact your healthcare team and to discuss anything related to your cancer and how you are dealing with it. They can assist you in finding what you need to help you cope, and they can provide suggestions about social workers, nutritionists and other therapists.
Addressing Financial and Legal Matters
When dealing with a life-threatening illness, you will need to put your financial matters in order. With the help of a trusted individual, you can create an organized system for managing your financial resources. Financial aid may be available from government programs, disability benefits, voluntary organizations, and living benefits from life insurance policies. Having a financial plan in place may reduce some of the stress in your life and help you cope better.
You may also want to get your legal matters in order, because some of these are related to your healthcare needs. Although a number of documents may be involved, a lawyer is not always needed, but you may need to have documents signed by a notary public.
Two documents that are involved with your healthcare, called advance directives, are a living will and a durable power of attorney. A living will allows people to know what kind of medical care you want if you are ever unable to speak for yourself. A durable power of attorney for healthcare names a person to make medical decisions for you if you are unable to. This person is chosen by you and is called a healthcare proxy. Note that each state has its own laws about advance directives. You may want to check with a social worker or lawyer about the laws in your state.
Two documents that are not part of advance directives are a will and power of attorney. A will tells how a person wants his or her money and property distributed. Power of attorney appoints a person to make financial decisions when you are unable to.
Caring for Loved Ones
Being the main caregiver for a loved one with cancer is challenging. Main caregivers sometimes put their own needs and feelings aside while practicing patience and providing emotional support in the form of understanding and encouragement. As a main caregiver, you also may be taking on new roles, including helping with daily needs such as meals and personal care and taking over tasks that formerly were your loved one’s responsibilities. Doing all of these things may consume a majority of your emotional and physical energy.
Dealing with cancer can be an emotional roller coaster. Caregivers also may experience a range of emotions, just as patients do, such as anger, guilt, grief, hopelessness, loneliness, and depression.
The caregiver may also have very different emotions from those of the patient. As a caregiver, you may feel that you must be perfect, but no one is perfect. You may feel hurt when the person you are caring for takes his or her anger out on you. Although the anger is not about you, it is difficult not to take it personally. You need to forgive yourself and your loved one, learn from the situation, continue to do the best that you can, and go on.
Caring for Yourself
As a caregiver, you probably have been putting your needs last, because they do not seem important right now. After dealing with everything else, you may not be able to find time for yourself. You may even feel guilty about getting enjoyment from anything at all. The combined pressures of all of these new responsibilities, of having to change your habits and routines, and of the worry about what is happening or what may happen can result in burnout.
- Do not make all activities revolve around the disease
- Seek support from others in the same situation
- Give yourself permission for quality time alone
- Provide time for yourself to grieve for the losses that your loved one’s illness brings
- Maintain the patient’s independence by not insisting on doing everything
- Become empowered by learning about pancreatic cancer
- Inability to sleep through the night, or difficulty getting up in the morning
- Loss of interest in friends who, or activities that, once brought you pleasure
- Feeling guilty about not doing enough or not wanting to do more
- Being easily irritated by people who tell you to “take care of yourself”
- Feeling hopeless
Dealing with Burnout
- Recognize the importance of your own health and welfare
- Do not feel guilty for thinking of yourself
- Learn to delegate responsibilities
- Insist other family members provide their fair share of support
- Ask friends and neighbors for any help they can provide; people often are happy to be asked and to help
- Recognize that you have limits, and forgive yourself for not being perfect
- Practice stress reduction techniques, even something as simple as relaxing in a hot bath
- Recognize and deal with depression
Staying Connected With Your Loved One
Staying connected with a loved one in a normal, healthy way may be difficult. To help stay connected, try to view this person as they were before their diagnosis. Do something fun together, or celebrate a special occasion. Cherish your loved one’s presence in the here and now. Help your loved one create a special physical space for health and healing, and make it a special place for both of you. Touch and hug your loved one.
Thinking of your relationship with your loved one as being a “team effort” may help you stay connected, reduce stress, and improve communication. It also may help your loved one feel more in control of some situations. For example, you can discuss some of the following topic:
- In the past, what other difficult times have we gone through together? How did we handle the problem?
- Which family and healthcare tasks do each of us prefer doing?
- Are there any tasks that we can share?
- What are the ways we can help each other?
- What activities can we do together to have fun and forget about cancer?
Talking about cancer with your loved one is an excellent way to stay connected, but it may be difficult at times. When talking about the disease use the same words that your loved one uses, such as “my disease” and not “pancreatic cancer.” Sometimes, the best way to communicate with anyone is just to listen in a nonjudgmental way. However, there are ways of approaching a difficult topic that needs to be discussed:
- Practice in advance what you will say
- Find a quiet time to talk
- First ask if it is okay to talk
- Explain why you want to talk
- Speak from your heart
- Allow time for your loved one to talk
- Do not feel the need to finalize everything in one conversation
- The most important thing you may be able to do is just listen
Additional information on this topic is available in The Four Things That Matter Most: A Book About Living by palliative care specialist Ira Byock, M.D.
Addressing End-of-Life Care
Patients and their families may want to make decisions to make end-of-life care as dignified and as physically and emotionally comfortable as possible. Patients may want to finish projects, spend time with family and friends, and have a spiritual advisor visit.
Being cared for at home may make patients feel more secure and more comfortable. They may want to be near family members, friends, and familiar surroundings. Healthcare providers can help coordinate the many services available to patients at home, including access to medical equipment, visiting nurses, and physical therapists, help with daily hygiene and care, assistance with meal preparation, and delivery of medications.
Home healthcare professionals may allow patients to receive even complex medical care in their homes. Services range from simple injections to complete care for seriously ill patients. Access is provided to a professional who can be contacted day or night to make an assessment and relay that information to the doctor. Overall care is supervised by the doctor, who is provided with up-to-date information on your condition.
Hospice care may be provided in the home, at a hospice facility, or in a hospital. Patients who have a limited life expectancy and who are no longer undergoing treatment for cancer may receive hospice care. The patient and his or her family members are included in the hospice care plan. Based on their needs and wishes, practical, emotional, and spiritual support may be provided. The goals of the hospice team are to be sensitive and responsive to the special requirements of each individual and each family and to make the patient as comfortable as possible. The patient is under professional medical care, with a focus on symptom relief. Trained volunteers are available to support and offer comfort and care to family members.