Learning to Speak Up With Cancer

What stands in the way of patient-physician communications and how can we get around these barriers?
BY JOSH MAILMAN
PUBLISHED: MAY 31, 2017
Know your limits. Countless articles say you have to be your own best cancer advocate. That’s obvious, and true. But not everyone can be the quarterback of his team. You also need to recognize your own personal limitations. For reasons such as age, experience and language, some survivors are not the best of advocates for themselves. OK, then what is plan B? Can you find someone to always stand with you—a family member, a clinical social worker or a member of a patient advocacy group? That person needs tools and the information to do the job. 
 
Take the yuck stuff in stride. Some neuroendocrine tumors come with a special and unwelcomed bonus—carcinoid syndrome, a condition that often causes unpredictable and sometimes severe bouts of diarrhea. Initially, NET patients may be mortified having to describe these episodes to the physician; please don’t. You will get used to it. Your doctor needs to know exactly how often you poop and the nature of this biological flotsam. Therapies are available to manage this, but they are not available if you fail to flag diarrhea as an issue.  
 
People with other forms of cancer have to contend with similar “yucky” problems. It is simply part of the territory we are now upon.
 
Finding the new normal. Some cancer survivors, especially those with constant reminders of their disease, such as my fellow NET community members, talk about adjusting to “the new normal.” In my view, however, the point of your health care team is to get you as close to “the old normal” as humanly possible. Why settle for less? 
 
Even people with intractable illness can get closer to their old selves than may think.   Eric Liu, M.D., who practices surgical oncology and is co-founder of the Healing NET Foundation, points out that he asks “what bothers the patient the most?” Liu tells patients that he might not cure their illness, but almost invariably he can make their lives better. But he needs to know what is important to them, otherwise it remains unaddressed.
 
I am reminded of what British scientist and historian Dr. June Goodfield once wrote:
 
“Cancer begins and ends with people. In the midst of scientific abstraction, it is sometimes possible to forget this one basic fact…Doctors treat diseases, but they also treat people, and this precondition of their professional existence sometimes pulls them in two directions at once.”
 
 
The doctors I know — and throughout my journey I’ve gotten to know many — are striving to do their part to focus on the patient. But to do their part means you, their patient and the person living with cancer, need to fulfill your role as well.
 

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