Getting a cancer diagnosis is even more overwhelming when unexpected
Doctor recommends four actions and one inaction to help you take control
He says to own your cancer and take an active role in selecting doctors and treatment
Editor’s Note: A dedicated cancer patient advocate, Dr. Peter Edelstein is a double-board certified surgeon partnering with cancer patients and their loved ones. He is author of the new book “Own Your Cancer: A Take-Charge Guide for the Recently Diagnosed and Those Who Love Them.”
No one is ever truly prepared to hear, “You have cancer” – three little words that, despite impressive advances in treatment, immediately conjure up frightening images of hair loss, chronic nausea, surgery and even death.
But hearing “the C-word” is even more overwhelming when it is entirely unexpected, spoken to a seemingly healthy person. The unanticipated lesion on your mammogram. The unsuspected tumor on your routine colonoscopy. The surprise prostate nodule on your physical exam.
And it may become more common: The American Society of Clinical Oncologists predicted in a report released Tuesday that cancer will become the leading cause of death in the United States in 16 years, surpassing heart disease.
For thousands of “healthy” individuals each year, the fears engendered by those three little words are accompanied by a horribly powerful shock.
So what do you do first when blindsided by cancer? Here, in order, are four initial actions and one inaction that will help you remain oriented and in control of your life.
Take a breath. Seriously. You are the same person today as you were yesterday when you didn’t know you had cancer. You have no symptoms, so while possible, it is unlikely your cancer has spread throughout your body. You truly have time to get yourself together, your thoughts organized. Your cancer is not spreading with every passing second or even every passing day. Take a breath and then commit to the following four steps.
Own your cancer. This is the single most important step in addressing your cancer and your life.
You are in shock over the diagnosis. So many fears are swirling around in your head. You’ll never be able to understand this complex, life-threatening disease. You are way past overwhelmed. The independent, successful, active, intelligent person you were just days ago (before you were a “cancer patient”) has rapidly disintegrated. You must surrender yourself over to “the experts” – the doctors and nurses and therapists. You must forfeit all involvement in your care.
No, you must not! Don’t hand over control of decisions that will affect both the duration and quality of your life to experts, who are strangers, who know nothing about you the individual, you the person.
Don’t give up ownership of your life. Continue owning your life by owning your cancer and accepting responsibility – learning the limited number of critical facts about your malignancy, selecting physicians, actively participating in your care decisions. Own your cancer and remain in charge of your life.
Don’t run to the Internet. In the midst of your initial shock and fear, the worst thing you can do is jump onto the World Wide Web. Not only are you emotionally volatile, you are not yet prepared to understand and interpret the prognostic and treatment statistics as they relate to your type and stage of malignant disease.
You likely don’t yet possess the knowledge to differentiate credible from the layers of crazy “alternative therapy” websites floating through the ether. Don’t worry. If you follow step two and truly own your cancer, you’ll soon recognize trustworthy sites and successfully translate information into meaningful knowledge specific to you.
Select the right physician partners. Most newly diagnosed cancer patients are so overwhelmed they simply accept without question the surgeon, radiation oncologist and oncologist to whom they are referred. But who makes these referrals? Doctors who don’t really know you refer you to other doctors who don’t know you at all.
No one better than you and your loved ones understand your personality, style and approach to life (including life’s challenges). You are far and away the most fit to select physicians who should partner with you in battling your disease.
It may be foreign to you, even intimidating, but you need to select your physician partners. Interview doctors. No, you won’t have the knowledge to analyze deeply the appropriateness of their treatment recommendations (that’s why you should interview more than one), but you’re really listening for how they interact with you and your family.
Do they welcome questions? Are they interested in educating you? Do you feel rushed? Are they too serious? Not serious enough? To participate actively in your care, you need to select physician partners who are the best fit for you.
Understand two critical features of your cancer. Yes, you are smart enough to learn about the two critical features of your cancer, as guided by your physician partners and credible resources, and put that knowledge to good use.
First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage. Staging differs by cancer type. However, common to all staging is objective evaluation of your tumor, of malignant spread (metastasis) to your lymph nodes, and of tumor metastasis to distant organs or structures.
Your specific cancer type and stage determine everything that matters to you: your chance of cure, potential treatments (and, therefore, associated risks and side effects), and your likelihood of recurrent cancer following treatment.
Yes, you were blindsided by your cancer. But you have the time and the smarts to make the right moves. Own your cancer.