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What to Do When the Diagnosis Is Cancer

Special from Bottom Line/Personal
April 1, 2001

Y our doctor has just given you the most feared diagnosis in medicine... and you think your worst nightmare has begun.

Cancer is not a death sentence... but how you deal with the diagnosis and treatment may make a significant difference in the outcome.

Most people have trouble thinking clearly during this time. Here’s a guide to help you prepare for a partnership that can lead to successful treatment and increased quality and length of life.

IMPORTANT GROUND RULES

Most patients with a cancer diagnosis can’t think clearly initially, so bring a family member or friend when you meet with the doctor to act as your advocate -- asking questions, writing down the doctor’s responses, etc.

NEXT STEPS

Create a partnership with your oncologist. Don’t just go along with medical decisions made by someone else. You are allied against a common foe with one of three goals -- a cure, quality time or decreased symptoms.

You and your doctor share responsibility for the outcome. And you, as an empowered patient -- or a knowledgeable family member acting on your behalf -- should make the decisions about your treatment.

Learn the language of cancer medicine so you can talk effectively with the specialists. If you don’t understand what the doctor is saying, say so -- and insist on an answer that you can grasp.

Become informed fast with a responsible Web site. Excellent resources...

American Cancer Society, www.cancer.org.

Johns Hopkins, www.intelihealth.com.

Mayo Clinic, www.mayohealth.org.

National Cancer Institute, www.cancernet.nci.nih.gov.

Be wary of any information that well-meaning friends obtain from untrustworthy Web sites.

Know your diagnosis. If you can “see the enemy,” you can fight it. So insist on seeing your X rays, CAT scans, mammograms, bone scans and MRIs. Find out precisely what type of cancer you have, the stage of your tumor and whether it has spread.

IMPORTANT QUESTIONS TO ASK

Your doctor will lay out your options --- but which path you pursue is your decision.

Ask about the pros and cons of chemotherapy, radiation and surgery. Decide what you are “buying” with each option or combination of options. You could be buying poor quality of life after a highly toxic treatment to live a little longer instead for peaceful, quality family time.

Nothing is an option, too: One often-overlooked option is to accept no treatment at all, especially for certain types of melanomas and renal cell and intestinal cancers that are slow-growing.

DECISIONS, DECISIONS

Ask your doctor these questions to help you make your decisions...

What are my chances of getting improvement from this treatment? If you are not satisfied with the response, seek a second opinion from another medical center specializing in your type of cancer.

Is this disease curable, controllable or confinable? Don’t accept a response of “We don’t know.” Cancer doctors do know certain scenarios based on the experiences of patients with the same type of disease. While every person’s disease is different, doctors have a “not-likely scenario.”

Can I have a referral? Some doctors may sense your discomfort with the treatment plan and offer to set up a second opinion. One second opinion -- no more than two -- should give you enough information to make a decision.

Am I eligible for any experimental treatments or clinical trials? Phase 1 studies are of brand-new agents for which there is little evidence of benefits. Phase 2 studies have promise. Learn about clinical trials from the National Cancer Institute (800-4-CANCER... http://cancertrials.nci.nih.gov).

Beware of going to a foreign country for a “cure.”

MANAGE YOUR CARE

Don’t put other people in charge of your medication, chemotherapy or radiation schedule unless you are incapable. Know what medication is contained in pills and what they are supposed to do. Other important steps...

Set up your support system. Keep everyone thinking positively. Being socially connected is one of the biggest factors behind why some patients do better with serious illness than others.

Well-controlled studies have shown that the support of family, friends and even pets lifts the spirits and boosts immunity. Families need to be supportive of the patient’s decisions -- no matter what those decisions are.

Achieve peace of mind in other ways. Listen to your favorite music during your treatment and recovery time. Several studies suggest that prayer -- by the patient and by others -- can aid recovery.

Acknowledge your limitations. If you normally work 60 hours a week, you may not have the energy to keep up that pace during your treatment and recovery. Focus on the activities that are most important to you.

Caution: Be careful about disclosing your diagnosis at work, and be discreet about who knows what details. Others may reorganize your work life for you, and that’s discrimination. If a manager announces that he/she has cancer, there may be a feeding frenzy for his position, and his authority is undermined.

Do not second-guess your health-care decisions. Don’t look back.

Better: Plan ahead. Trust your instincts on your treatment and maintain a comfort level with your medical team. If you don’t think someone is acting in your best interests, get someone else who is.

But do make life decisions that you may have been delaying...

Draw up or revise a living will.

Designate a proxy to act on your behalf if you become unable to make health-care decisions.

Get prudent financial-planning advice.


Bottom Line/Personal interviewed Edward T. Creagan, MD, professor of medical oncology at Mayo Medical School and holder of the endowed chair American Cancer Society Professor of Clinical Oncology.

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