Guidance by Phase

In crisis

If you are experiencing a crisis, you may need to deal with your distress and feelings of being in crisis before you can focus on making informed cancer decisions. If you are in crisis, we encourage you to deal with shock and pain first. Recognize if you’re in distress and get help. Then you can begin gathering information and making treatment decisions from a much more grounded and clear space.

If you need immediate help:

Shock

Many people go into shock when receiving a cancer diagnosis.

Because shock can make it difficult to think clearly, postpone any non-emergency decisions about medical treatments until you recover from shock if possible. As the shock wears off, you will begin to be in a position to think about medical decisions.

Before making any decisions, ask your physician how long you can take to decide. Often, you can take several weeks or more to consider your options. We have known people who regret that they rushed into treatment without fully understanding the choices available.

Managing symptoms

If you have pain or any other distressing symptoms, make every effort to get help to manage this before you do anything else. One of the strengths of modern medicine is its ability to manage most cancer-related pain and other symptoms.

Distress

A cancer diagnosis often causes distressemotional, social, spiritual, or physical pain or suffering that may cause a person to feel sad, afraid, depressed, anxious, or lonely; people in distress may also feel that they are not able to manage or cope with changes caused by normal life activities or by having a disease, such as cancer, as can cancer treatments. We know that high levels of distress can contribute to problems in other areas of life, yet doctors typically don’t ask about distress, and patients don’t say anything unless they’re asked. Sometimes distress can hamper your decisions or your ability to prepare for and take treatments. Tell your health care team about your distress. They can connect you with help and resources to manage the distress.

Recognizing if you are in distress

Nearly everyone’s distress is pretty high right at diagnosis and through the beginning of treatment—this is acute distress. Any of the following that are prolonged or interfering with your ability to function may be signals that you might need extra help in managing your distress:

• Sadness, fear, and helplessness
• Anger, feeling out of control
• Questioning your faith, your purpose, the meaning of life
• Pulling away from people, including those close to you
• Constant worrying about your illness
• Constant worries about your social role (as mother, father, caregiver, and so on)
• Poor sleep, appetite, or concentration
• Depression, anxiety, or panic

Describing your distress to your oncology team

Distress can be measured. An oncology social worker, nurse, doctor, or psychologist can conduct a psychosocial assessment—asking about your emotional, social, and financial concerns and challenges. Routine distress screening is not typically done right at diagnosis and the beginning of treatment when nearly everyone’s distress is usually fairly high. Instead, you may be screened for distress a few weeks after treatment starts, when acute distress is expected to ease. A higher level of distress at this time is a signal that you might need a referral for help.

Your cancer treatment team may be proactive and conduct distress screening. However, you don’t need to wait for your care team to ask you about it, especially if your distress is interfering with your ability to cope and function. Let them know of your distress.

If you feel your distress level is too high, take a copy of the completed tool to your oncology doctor, social worker and/or treatment nurse to review and refer you to resources for help.

Soon after your cancer diagnosis, you might ask your doctor if and when someone will be conducting a psychosocial assessment, including distress screening. If your cancer treatment team does not provide assessments, you can ask for a referral to an oncology social worker, oncology nurse navigator, or psychotherapist who can assess your situation and refer you for professional help with psychosocial concerns as well as distress.

Further distress screening tools

Ask for help

If you are experiencing distress, even if it isn’t severe, getting help may be useful. Some suggestions from Cancer.Net:²Deshields TL. How to Recognize Cancer Distress and Cope with It. November 28, 2017. Viewed February 27, 2022.

• Talk to your cancer care team.
• Connect with other cancer survivors.
• Get counseling.

Helpful link on distress

Before making cancer treatment decisions

After you deal with the shock and the pain, and before rushing to make cancer treatment decisions, you might want to stop and ask yourself:

• Are you in a frame of mind, and do you have all the knowledge that you need now, to make sound decisions about your cancer treatment?
• You may have a first impulse to try alternative treatments and delay or avoid conventional treatments. Is this impulse based on facts and evidence or on emotions? Have you investigated the likely outcomes of delaying conventional treatment? Do you need more information to make wise choices?
•  Would a second opinion help you understand your diagnosis and treatment options?

Before making any decisions, ask your physician how long you can take to decide. Often, you can take several weeks or more to consider your options.

Once you’re in a calm enough space to think with some clarity, and you know how much time you have for a decision, you’ll be ready to explore all the options for wherever you are on your cancer pathway.

Helpful links