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IMPORTANT LEGAL NOTICE AND DISCLAIMER: All research and clinical material published by Froedtert & The Medical College of Wisconsin in this publication is for informational purposes only. This publication is not designed to, and does not provide medical advice and does not substitute for a healthcare provider’s own clinical judgment. Do not disregard professional medical advice, or delay in seeking it because of something you have read in this publication. Please consult your own physician with respect to your own symptoms or medical conditions as diseases commonly present with variable symptoms. As always, it is the responsibility of the healthcare provider treating an individual to determine the appropriateness of any given course of treatment in light of that individual’s unique clinical situation and the provider’s own expertise. The procedures or treatments mentioned in this publication may or may not be considered covered benefits by your insurance. You are encouraged to consider a conversation with your insurance representative as part of your decision- making process before having any medical procedure. March 2011.


The Survivor Center


By Bruce Campbell, MD, Medical College of Wisconsin Otolaryngologist


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My new patient and his wife have entered the “cancer world,” a place where nothing is familiar. He clutches a self-help book, but mostly sits in stunned silence.


“We never even thought about cancer before,” his wife tells me, “Never! We knew nothing about it until last week when the doctor gave him the diagnosis!” She pauses, looking protectively at her husband. “We have been reading nonstop ever since. It is so overwhelming.”


She has a pile of Internet downloads and a notepad crammed with carefully numbered questions: Why did this happen? Shouldn’t the cancer have been discovered sooner? Two Internet sites have completely opposite recommendations. What about lasers and robots? What clinical trials are available? Can he have treatment closer to our home? The side effects described on this site are terrifying! Can we start treatment tomorrow?


In the 1980’s, people often arrived with no information and, sometimes, had not even been told they had cancer. Most people could, however, recall a family story about a distant relative who had suffered through treatment years before. “She developed a terrible burn and then died,” they would recall. “There is no way I will take any radiation!” Thanks to the Internet, my task has shifted from providing basic information to sorting out competing information patients have encountered.


Cancer survivorship has also changed. Twenty years ago, survivors often felt completely alone, lamenting they had no one with whom to share concerns. In those days, a regular group of my patients met weekly just to talk. The group disbanded as survivors turned increasingly to the Internet. Social media allow a 24/7 connection to survivorship sites, blogs, discussion boards, etc.


What has not changed? The statement, “You have cancer,” still brings pain and fear. The reassurance, “You no longer have cancer,” can sometimes bring doubt and uncertainty. Patients are overwhelmed by the diagnosis, well-meaning advice, tests, treatments, appointments and information overload.


Not long ago, I realized I see about four times as many people for follow-up visits as I do for initial visits. In other words, I see many more people who have been cured of cancer than I see people who have cancer. For every patient who needs a cancer care plan, four need a recheck and encouragement. For every patient who needs to learn what is to happen next, four need reassurance that the things they are experiencing are common for survivors. For every patient who is scheduled for surgery, I try to help at least four leave behind their fears.


My new, overwhelmed patient will complete his cancer treatment in several weeks. He and his wife will struggle through the ordeal and, once treatment is completed, they will enter the “survivor world,” full of its own mysteries and overwhelming experiences. Our “Cancer Center” will become, for them, a “Survivor Center.” It will be a good place for us to meet once again.


Bruce Campbell, MD, FACS, writes about quality of life issues for cancer patients in his blog “Reflections in a Head Mirror” at froedtert.com/reflections. He sees head and neck cancer patients in the Froedtert & The Medical College of Wisconsin Clinical Cancer Center.


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