Talking With Your Doctor About Cancer and Its Therapy

September 1, 1996

The period immediately after a cancer diagnosis is generally a time of stress and uncertainty, and the need to make treatment decisions may further add to the distress. If you have been diagnosed with cancer, you need to be able to talk openly with your doctor about your treatment options, and continue to ask questions and stay informed throughout your treatment and follow-up.

The period immediately after a cancer diagnosis is generally atime of stress and uncertainty, and the need to make treatmentdecisions may further add to the distress. If you have been diagnosedwith cancer, you need to be able to talk openly with your doctorabout your treatment options, and continue to ask questions andstay informed throughout your treatment and follow-up.

Some doctors use a form to make sure that their patients haveall the information they need about their cancer and its treatment.The form that I use, provided here ("What You Need to KnowAbout Your Cancer"), specifically lists the diagnosis, theprognosis (particularly whether your disease is curable or not),and the treatment goals for your illness.

You can take this form to your cancer doctor, and ask him or herto fill it out and go over it with you.

Before starting therapy, you should get as much information asyou can about all the possible treatment options for your cancer.My patients find it useful to ask me a series of questions abouteach treatment (see "Questions to Ask Your Doctor BeforeStarting Chemotherapy").

In addition to the information you get from your doctor, you canalso easily obtain information on cancer treatments on your ownfor free from the National Cancer Institute (NCI).

A phone call to 1-800-4-CANCER (1-800-422-6237) can get you state-of-the-artinformation. Calling 1-301-402-5874 from your fax machine tiesyou into CancerFax, which can get you current information describingthe diagnosis, prognosis, treatment, and outcomes for nearly everycommon cancer.

Aggressive Chemotherapy

Medicine has made great strides in the treatment of cancer, anda large number of patients today are cured of their disease orsurvive in good health for many years after their diagnosis. Butoften cancer remains a serious, often terminal disease. When thatis the case, the physician and patient together must make decisionsabout whether to use aggressive chemotherapy, and when to stopsuch treatment when it is no longer helping.

For some cancers, aggressive chemotherapy has a good chance ofachieving a cure or of adding many years to a patient's lifespan.In those situations, it makes sense to put up with treatment sideeffects for a few months in exchange for a good chance at longerlife.

But in other cancers, such as lung cancer, chemotherapy generallyadds only a few extra weeks or months of life. This extra timemay be critically important to some patients, while others viewit as not worth the time, effort, and expense of chemotherapy.But it is up to you to decide. And it is up to your doctor togive you the information to help you decide in a way that youcan understand.

For example, a doctor may tell a lung cancer patient, "thischemotherapy has a 1 in 5 chance of working." In advancedlung cancer, which has no chance of cure, this does not mean thatthe therapy provides a 1 in 5 chance of cure, but only that in1 of 5 patients, the cancer responds to the drug (doctors callthis a "20% response rate"). The tumor may become smalleror grow more slowly, giving the patient a few extra months oflife.

If you make the decision to forego chemotherapy or other aggressivetreatments, that does not mean that your doctor will no longerbe involved in your care or that no more treatment will be given.You may still need treatment to relieve pain or other symptoms.

Cancer pain can be controlled, and patients and their physiciansshould not be reluctant to use narcotic drugs when needed. Thesecan be given safely without fear of the patient becoming addictedto the drug or "tolerant" to it so that it no longerworks. If you think your doctor is not doing enough to relieveyour pain or other symptoms, demand pain relief. You may wantto ask for a referral to a specialist or to the cancer center'spain unit.

What Is a Living Will?

A "Living Will" tells your doctors what type of lifesupport you want if your condition worsens. A "do not resuscitate"(DNR) order allows you to receive all types of care for comfortbut to forego measures such as cardiopulmonary resuscitation (CPR)to restart the heart if it stops, or placement on a ventilator(breathing machine).

A "Durable Power of Medical Attorney" tells your doctorwho should make decisions about your care if you cannot.

Conclusion

When cancer is diagnosed, physicians and patients alike enterinto treatment with hope and a strong desire to fight the disease.If standard treatments fail, some patients may wish to continuethe fight by enrolling in a clinical trial to receive an experimentaltreatment.

But there may come a time when your cancer doctor has to tellyou and your family that there are no more drugs available totreat your disease. This doesn't mean that either you or yourdoctor has somehow "failed"; it only means that thisparticular disease could not be stopped despite everyone's bestefforts.

We still have much to learn about cancer, and scientists todayare working hard to learn all they can about the disease. Butwe are still a long way from winning the "War Against Cancer."

Questions to Ask Your Doctor Before Starting Chemotherapy

What are the main side effects of the treatment?

What is the chance of each side effect occurring?

What can be done for each side effect, and how long will theylast?

Is this treatment given for cure, or to shrink the cancer, orto relieve symptoms so that I wll feel better?

What is the chance of this treatment making me live longer?

What is the chance of this treatment making my "quality oflife" better?

What is the chance of this treatment relieving the symptom thatbothers me the most?

Would you take this treatment yourself?

If not, what would you do?

What do most people do?

Massey Cancer Center, and Project on Death in America