Life Expectancy: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources documents for questions to ask and for more resources.

Cancer survivors often hesitate to plan for the future, because they worry about how cancer has affected their life expectancy - how long they will live after cancer treatment. Some survivors choose not to think about their life expectancy and live one day at a time. Other survivors want to know more about whether their cancer or the treatment they received will affect them in the future. You can talk to your health care team about any concerns or questions you have about your life expectancy.

Sometimes the information health care professionals use to estimate your life expectancy can seem very overwhelming and confusing. They often use statistics or percentages when they talk to you about life expectancy, and it's important to find out where those numbers come from and how they apply to you.

If your health care team says that your life expectancy is not very long, it can be very upsetting. This document provides information about how to talk to your health care team about life expectancy and understand the statistics they use to estimate your life expectancy. It does not explain how talking about life expectancy can affect you emotionally, which is something you may want to discuss with a mental health professional.

It's important to remember that survivors have been known to prove the statistics wrong. While knowing statistics about your life expectancy may give you a better idea of how long other survivors of your cancer have lived, their experience could be very different from yours. By talking to members of your health care team about your life expectancy, you can find out what healthy behaviors may increase your chances of living longer.

What are statistics?

Statistics are numbers and percentages that reflect research and measurements of historical data. Statistics about life expectancy are often based on a group of survivors who participated in a study where their health status was observed and recorded. Most of these studies took place at least five or 10 years earlier. You may have received a completely different treatment or different amounts of chemotherapy or radiation than they gave a few years ago.

Statistics that your health care team shares with you should be related to:

• Your type of cancer
• The stage of your cancer when you were diagnosed
• The particular traits of your cancer (such as cell types and growth traits)
• The treatment you received
• Your unique physical and emotional health

By using these factors, your health care team is in a better position to talk to you about life expectancy and how to manage your life after cancer. The numbers don't take into consideration your unique physical and emotional characteristics. There are many factors that can affect your life expectancy.

The statistics used to estimate your life expectancy should be used as very general guidelines. They are not exact calculations of how long you are going to live.

How can survivors apply statistics on life expectancy to their own lives?

At the time of diagnosis, people often ask, "What are my chances of surviving?" After active treatment has ended, many cancer survivors ask, "What are my chances of staying healthy and living a long life?" Your health care team may answer these questions with survival statistics.

What your health care team might say: "People with your type of cancer have a 60 percent 5-year survival rate."

What does it mean to have a "60 percent 5-year survival rate?" This statement means: Of 100 people who have this diagnosis or who had this kind of treatment, 60 would still be alive five years later. While you may immediately think of the 40 people who didn't live, it's important to remember that more than half of the survivors lived past five years after treatment.

Most statistics are presented as a 5-year survival rate; however, this does not mean that survivors do not live longer than 5 years after their diagnosis. There are cancer survivors who survive for much longer.

It is also possible that your situation will be very different from what the statistics suggest. The survivors who were part of this study are not exactly like you, even though they may have had the same type of cancer or the same type of treatment. Everyone responds to treatment differently, and it's impossible to determine exactly how the treatment you received for cancer will affect you during your survivorship.

When can survivors talk to their health care team about life expectancy?

There is no right or wrong time to discuss your life expectancy with a member of your health care team. Because all of the statistics and information are overwhelming, you might want to set up a separate visit so you and a member of your health care team have time to discuss the information and answer all of your questions.

Many survivors begin talking to their health care team about life expectancy when they finish their treatment and begin focusing on their quality of life after cancer. This is also a good time to discuss with your health care team how to minimize your risks for aftereffects of treatment. Experiencing side effects from treatment for cancer later in life may affect your life expectancy and your quality of life.

Why do medical professionals use statistics when talking to survivors about life expectancy?

Even though statistics can be confusing and at times frustrating, health care professionals feel it is the easiest way to talk with you about life expectancy. Don't be afraid to ask for further explanation and to keep asking until the answer is clear to you.

Examples of questions you can ask about statistics relating to your life expectancy:

• Did the people that the statistic is based on receive the same treatment that I received?
• If my life expectancy is 10-20 years, does this mean 10-20 years without the cancer coming back? If the cancer comes back, does that affect my life expectancy?
• Are there any special circumstances such as other illnesses or aftereffects of treatment that could affect my life expectancy?
• What is the quality of life among the percentage of people with my cancer who survived?
• Is there anything I can do to increase my life expectancy?

What are some suggestions for survivors who want to know more about their life expectancy?

Below is just a brief list. For more information, see Suggestions.

• Talk to your health care team about how to understand the statistics that they use to estimate your life expectancy and what they mean for your future.
• Talk to other survivors about how they deal with life expectancy and how they talk to their health care team.
• Talk to a therapist if dealing with your life expectancy is causing you to feel depressed, anxious or overwhelmed.

This document was produced in collaboration with:
Pamela J. Haylock, RN, MA
Oncology Consultant & Doctoral Student, University of Texas Medical Branch, School of Nursing

Life Expectancy: Suggestions

Talk to your health care team about how to understand the statistics that they use to estimate your life expectancy and what they mean for your future:

• Use the Cancer Survivor's Health Journal to prepare for your next visit with a member of your health care team.
• The Cancer Survivor's Health Journal can be found in the Survivorship Tools area of My Survivorship. You will need to create a free membership in order to access the Cancer Survivor's Health Journal.
• Use the Health Care Team Appointment document to write down everything you want to ask your health care team. You can write notes and questions on the sheet between visits.
• Use the List of Medications to keep track of your medications. Bring this document to the visit along with all of your medication bottles. This lets the team know all the medications you are taking, including vitamins and over-the-counter medications.
• Use the Health Care Team Appointment document to take notes during the visit and to write down your next appointment date.
• Keep all of these documents together in a binder and bring it with you to your visits.
• Bring extra copies of all of these documents with you to give to the health care team. You can also fax or mail these documents in before the visit. Having the health care team read your documents may be an easier way for you to communicate.
• You can store pamphlets, medication side effect inserts and important phone numbers in your notebook so that everything is in one place.

Talk to other survivors about how they deal with life expectancy and how they talk to their health care team:

Support groups provide a safe environment to share experiences with other survivors, learn new ways to handle difficult situations and talk about the emotions. You will see different styles of coping with stress and adjusting to life as a cancer survivor. If you are uncomfortable talking about certain subjects with your family or friends, a support group offers you a place to talk freely about what is important to you.

Ways to find out more about support groups in your area:

• Ask a member of your health care team for suggestions. Most cancer programs offer support groups for cancer survivors and their family members right in the clinic or hospital.
• Call a nearby cancer center or university hospital and ask about support groups.
• Call the American Cancer Society at 1-800-ACS-2345 (1-800-227-2345) and request a list of support groups and cancer centers in your area.
• Visit the CancerCare Web site at www.cancercare.org, or call 1-800-813-HOPE (1-800-813-4673) for information on telephone, online or on-site support groups.

Talk to a therapist if dealing with your life expectancy is causing you to feel depressed, anxious or overwhelmed:

Ask your health care team for a referral to a therapist who works with other cancer survivors. Most cancer centers employ oncology social workers who are specially trained to work with cancer survivors and their families. Even if you are not a patient at a cancer center, the oncology social worker may meet with you or refer you to someone else in the community. The Association of Oncology Social Work (AOSW) is also a good resource. Visit their Web site at http://www.aosw.org or phone them by calling (215) 599-6093.

It is important to interview the therapist to find out if he or she is the right professional for you. Speak honestly with the therapist and let him or her know your reasons for wanting to work with a therapist.

Examples of questions to ask the therapist:

• What type of education background do you have?
• What license do you have?
• What is your experience working with people with cancer?
• What do you understand about the emotional response to this illness?
• Do you take my insurance?
• Do you work with people who are anxious? Depressed?
• Do you know community resources for people with cancer?