Having cancer is very stressful. While absorbing the fact that you have cancer, you have to learn about tests and treatments, and the time you have to accept a treatment plan can feel very short. There are many issues to consider relating to your treatment plan.

Benefits of a treatment plan

Learning you have cancer starts an unplanned journey to an unknown place. A treatment plan is like having a roadmap for your journey. It is a written course of action through treatment and beyond. It can help you, your loved ones, and your treatment team. A treatment plan is useful for:

• Starting and guiding talks about treatment
• Teaching what the treatment choices are
• Informing everyone of the decisions made
• Reminding everyone of the decisions made
• Pinpointing who is in charge of each part of care
• Controlling stress
• Knowing what to expect
• Changing from one doctor to another
• Improving contact among your doctors
• Providing care for all issues

Parts of a treatment plan

A treatment plan addresses all cancer care needs while respecting your beliefs, wishes, and values. It is likely to change and expand as you go through treatment. The plan will include the role of your doctors and how you can help yourself. A treatment plan often has the following parts:

Cancer information

Cancer can greatly differ even when people have a tumor in the same organ. Test results that describe the cancer are reported in the treatment plan. Such test results include the cancer site, histology subtype, and cancer stage. If done, test results of known gene changes are also included.

Your treatment team

Cancer care is a team effort. Who is on your team depends on the treatments you choose. Surgeons and radiation oncologists give local treatments. Medical oncologists give systemic treatments. Your primary care doctor can also be part of your team. He or she can help you express your feelings about treatments to the team. Treatment of other medical problems may be improved if your primary care doctor is informed about your cancer care. Besides doctors, you may receive care from nurses, social workers, and other health experts. Ask to have the names and contact information of your health care providers included in the treatment plan.

Cancer treatment

There is no single treatment practice that is best for all patients. There is often more than one treatment option along with clinical trial options. Treatment planning takes into account many factors, such as:

• The cancer stage
• Location of the tumor
• Your general health
• Treatment side effects
• Costs of treatment
• Changes to your life
• What you want from treatment
• Your feelings about side effects

The cancer treatment that you agree to have should be reported in the treatment plan. It is also important to note the goal of treatment and the chance of a good treatment response. In addition, all known side effects should be listed and the time required for treatment should be noted.

Your treatment plan may change because of new information. You may change your mind about treatment. Tests may find new results. How well the treatment is working may change. Any of these changes may require a new plan.

Stress and symptom control

Cancer or its treatment can cause bothersome symptoms. You may also have symptoms from the stress of having cancer. Such symptoms include pain, sleep loss, and anxiety. Helping you to be comfortable and stay active are key goals of the treatment plan. There are ways to treat many symptoms, so tell your treatment team about any symptoms you have.

Having cancer may cause you to feel helpless, fearful, alone, or overwhelmed. There are ways to manage this stress. At your cancer center, cancer navigators, social workers, and other experts can help. There may also be helpful community resources, such as support groups and wellness centers.

Financial stress is common. You may be unemployed or miss work during treatment. You may have too little or no health insurance. Talk with your treatment team about work, insurance, or money problems. They will include information in the treatment plan to help you control your finances.

Survivorship care

Cancer survivorship begins on the day you learn of having cancer. For many survivors, the end of active treatment signals a time of celebration but also of great anxiety. This is a very normal response. You may need support to address issues that arise from not having regular visits with your treatment team. In addition, your treatment plan should include a schedule of follow-up cancer tests, treatment of long-term side effects, and care of your general health.

Advanced care

Talking with your doctor about your prognosis can help with treatment planning. If the cancer can’t be cured, a care plan for the end of life can be made. However, such talks often happen too late or not at all. Your doctor may delay these talks for fear that you may lose hope, become depressed, or have a shorter survival. Studies suggest that these fears are wrong. Instead, there are many benefits to advanced care planning. It is useful for:

• Knowing what to expect,
• Making the most of your time,
• Lowering the stress of caregivers,
• Having your wishes followed,
• Having a better quality of life, and
• Getting good care.

Advanced care planning starts with an honest talk between you and your doctors. You don’t have to know the exact details of your prognosis. Just having a general idea will help with planning. With this information, you can decide at what point you’d want to stop chemotherapy, if at all. You can also decide what treatments you’d want for symptom relief, such as surgery or drugs.

Another part of the planning involves hospice care. Hospice care doesn’t include treatment to fight the cancer but rather to reduce symptoms caused by cancer. Hospice care may be started because you aren’t interested in more cancer treatment, no other cancer treatment is available, or because you may be too sick for cancer treatment.

Hospice care allows you to have the best quality of life as possible. Care is given all day, every day of the week. You can choose to have hospice care at home or at a hospice center. One study found that patients and caregivers had a better quality of life when hospice care was started early.

An advance directive describes the treatment you’d want if you weren’t able to make your wishes known. It also can name a person who you’d want to make decisions for you. It is a legal paper that your doctors have to follow. It can reveal your wishes about life-sustaining machines, such as feeding tubes. It can also include your treatment wishes if your heart or lungs were to stop working. If you already have an advance directive, it may need to be updated to be legally valid.

Your role in planning

The role patients want in treatment planning differs. Some patients want to be involved as little as possible. Others want to know everything and share decision making with their doctors. These two roles are described as passive and active. Tell your treatment team which role you want or if you want a role somewhere in the middle.

Passive role

In a passive role, a person often doesn’t seek out information, speak up for him/herself, or think through treatment options. This may be due to a high level of stress. It may be hard to hear or know what others are saying. Stress, pain, and drugs can limit your ability to make good decisions. You may also want a passive role because you don’t know much about cancer. You’ve never heard the words used to describe cancer, tests, or treatments. Likewise, you may think that your judgement isn’t any better than your doctors’.

Letting others decide your treatment may make you feel more at ease. But, who do you want to make the decisions? You may rely on your doctors alone to make the right decisions. You can also have loved ones help. They can gather information, speak on your behalf, and share decision making with your doctors. Even if others decide your treatment, you still have to agree to treatment by signing a consent form.

Active role

In an active role, a person often searches for all information, prepares for all outcomes, and speaks up for him/herself. He or she may take the lead or share in decision making. Taking this role may make you feel more certain and hopeful. You’ll likely get the treatment you want, at the place you want, and by the doctors you want.

There are four key steps to making a shared treatment decision. First, know what you want from treatment. Do you want a cure or symptom relief? What hardships are you willing to accept to meet your goal? Second, know your test results. This information can pinpoint what’s important for you on websites and in books and brochures. It can also clarify which treatments are needed. Third, strive to have helpful talks with your doctor. Prepare questions before your visit and ask questions if your doctor isn’t clear. You can also record your talks and get copies of your medical records. Fourth, accept help from others. An active role doesn’t mean going through it alone. Others can help you be active by finding information, taking notes, asking questions, and helping you talk through your options.

Getting a second opinion

The time around a cancer diagnosis is very stressful. People with cancer often want to get treated as soon as possible. They want to make their cancer go away before it spreads farther. While cancer can’t be ignored, there is time to think about and choose which treatment plan is best for you.

You may wish to have another doctor review your test results and the treatment plan your doctor has recommended. This is called getting a 2^nd opinion. Cancer is a serious disease, and new information may have been published about which treatments are most effective and safe. You may completely trust your doctor, but a 2^nd opinion on which treatment is right for you can help.

Copies of the pathology report, a DVD of the imaging tests, and other test results need to be sent to the doctor giving the 2^nd opinion. Some people feel uneasy asking for copies from their doctors. However, a 2^nd opinion is a normal part of cancer care. When doctors have cancer, most will talk with more than one doctor before choosing their treatment. What's more, some health plans require a 2^nd opinion. If your health plan doesn’t cover the cost of a 2^nd opinion, you have the choice of paying for it yourself.

Choosing your cancer treatment is a very important decision. It can affect your length and quality of life.

This is an extract from the NCCN Guidelines for Patients^®. NCCN Guidelines for Patients^® on specific cancers are available to view or print out