“You Have Cancer.” Own It.

285- you have cancerYou need not play a passive role on your cancer journey.

By Peter Edelstein, MD , FA CS, FA SCRS

You have cancer.

These three little words are among the most terrifying in the English language. And they will be heard by more than one-third of you reading this article during your lifetime. Even now chances are that you have either had cancer yourself or you have at least one family member or close friend who has been diagnosed with a malignancy.

For most newly diagnosed patients and their loved ones, “You have cancer” hits like the proverbial ton of bricks—and it is terrifying. Will my hair fall out? Will surgery disfigure me? Will I be continuously nauseated for weeks on end? Will treatment leave us broke? Will I lose my job? My life? Amid these fears, understanding cancer itself is overwhelming, too vast, and too complex.

It is completely understandable, given the fear and the confusion that accompany a diagnosis, that most new cancer patients immediately surrender their autonomy and independence, handing over all care decisions to strangers: physicians, nurses, and therapists. And it is understandable that most new cancer patients give themselves over completely to the medical system, traveling along their cancer journey as passive victims. Understandable— and wrong.

Our medical system is only too happy to accept and process cancer patients as generic, passive victims rather than as intelligent, independent, and unique human beings. From the selection of physicians to the determination of treatments, the “cancer machine” expects little if any input from patients and their loved ones. This is not an intentional evil; rather it is simply easier and faster for physicians, nurses, therapists, hospitals, and insurers if cancer patients and their loved ones just quietly go along with every recommendation and decision. Simpler, faster, and crazy—because if you have cancer, it is your life that hangs in the balance, and both the duration and the quality of that life are at stake. Just as it is you who determined whom to marry, you who raised your children, and you who worked to support your family, it is you who must actively participate in determining the approach to your malignancy.

That’s right: it is not a cancer, it is your cancer. And just as you have owned the critical decisions and processes and actions that define your precancer life, now you must own your cancer. Owning your cancer does not mean that you no longer fear losing your hair or no longer dread the potential weeks of nausea or are no longer afraid to die. Owning your cancer does not mean that you suddenly understand the entire field of oncology. Instead, owning your cancer means abandoning the “cancer victim” role and taking charge—as you have your entire adult life—accepting responsibility for learning critical information and driving key decisions regarding this life-changing event (life-changing not only for you but for your loved ones as well). Cancer owners, unlike “cancer victims,” are independent people, mothers and fathers, wives and husbands, managers and workers, who have cancer.

Now you are thinking that I’m crazy. After all, you didn’t go to medical school. You are not a cancer expert. True. But here are a couple of other truths that you should accept.

#1 You are smart enough to actively participate in your cancer care decisions.

You have navigated through life to this point, likely meeting many milestones: successfully graduating from school, figuring out a mortgage compatible with your financial situation, working daily at your job, saving money for retirement, raising kids (with all those new challenges). You know how to ask questions; you are experienced in learning what you need to learn.

#2 You do not have to learn everything about cancer to participate in your care decisions.

You are smart enough (see item 1) to understand the limited number of critical aspects of your specific cancer situation, empowering you to successfully select and partner with physicians and other clinicians in charting a course for your care.

#3 No one knows you better than you do.

You simply cannot let a medical system that does not truly know you determine who will be your physician partners and which lifealtering treatments will be used to combat your disease—no more than you would let strangers pick your spouse, select your career, or raise your children. You must pick the physicians who are the best fit for you. You must participate in the selection of available treatments, each with its own potential risks and benefits. You.

My experience in caring for hundreds of cancer patients has provided me with deep knowledge of the cancer journey. By listening and watching and partnering with women and men in their battles with cancer, I have witnessed the strength and the comfort that comes from cancer ownership, regardless of the ultimate outcome. Unlike patients who allow their cancers to own them, I have seen cancer owners and their loved ones empowered to lead in the selection of true physician partners; to ask questions and gain an understanding of critical cancer concepts; to guide their selection of treatments; to evaluate the potential benefits clinical trials offer them; and to truly, openly, and honestly communicate fears, hopes, and feelings with one another.

You are the same person the day after learning you have cancer as you were the day before. You have owned important decisions and critical processes, both good and bad, throughout your adult life, learning what you had to learn, asking critical questions, selecting your partners, and making the tough calls. You and your loved ones will never be faced with a greater challenge than a cancer diagnosis. Now is not the time to give up ownership of your life, to forfeit your independence, to turn over decisions to virtual strangers that will dramatically impact the life you and your loved ones have built. As you have your entire adult life, you must own this. And you can.

A passionate cancer patient advocate, Peter Edelstein, MD, FACS, FASCRS, is a double–board certified surgeon partnering with cancer patients and their loved ones. A highly sought-after speaker, Dr. Edelstein has delivered hundreds of interactive lectures both for the medical community and the general public during his training at the University of Chicago, the University of California, and the University of Minnesota and as a member of the surgical faculty at the Stanford University School of Medicine. Dr. Edelstein is author of the new book, Own Your Cancer: A Take- Charge Guide for the Recently Diagnosed and Those Who Love Them (Lyons Press, 2014; $18.95), which is available on Amazon. com. Visit ownyourcancer.com for more information.