The very word evokes terror and anguish — and rightly so. Because being diagnosed with cancer means suffering and possibly death, not to mention having one’s life spin out of control. Suddenly, doctors, lab tests, and treatment protocols dictate the patient’s life. Now the patient’s life belongs to doctors and nurses.
That’s exactly how I felt when I was diagnosed with breast cancer. When I was undergoing chemotherapy and radiation simultaneously, I felt I had no control over my life. I felt I was at the mercy of healthcare professionals — not to mention my cancer. And when I underwent three lumpectomies and, ultimately, a preventive bilateral mastectomy with reconstruction, I was often scared. My life seemed to be careening out of control.
The truth is, though, I learned to exert some control over my circumstances. And you, dear readers, can too. Here’s how:
Hire Dr. Right and Fire Dr. Wrong. As a cancer patient, I had to make tough treatment choices. But an unanticipated medical question was this: whom do I want as my physicians? I allied myself with doctors who would be a good fit for me, who had high competence, and treated me with respect and as an equal partner in my healthcare. Thus, I hired a fantastic medical oncologist, who referred me to a great radiation oncologist and mastectomy surgeon. And I heard through the doctor grapevine about an outstanding plastic surgeon, whom I also eventually hired.
I eventually had my medical Dream Team in place.
All this sounds easy, but it was not. I had to deal with more quacks and doctor duds who wouldn’t treat me with the respect I deserved and needed. I fired a medical oncologist who said I’d be dead soon and calculated and re-calculated my odds of survival by using the Internet, a surgeon who wanted to remove organs that were not up for removal, and doctors who were just plain mean and dismissive.
Truth is, while many great doctors are out there, not every physician is a gem. While you cannot always control your medical outcomes, you can choose your physicians and assert how you want them to treat you. You deserve respect, not dismissiveness.
If Necessary, Employ Civil Disobedience with Medical Personnel. Many healthcare professionals — and I include administrators and receptionists into the mix — have treated me with respect, kindness, and cooperation.
Conversely, some receptionists have given me a rather cold reception — by being rude and mean to me, giving me inaccurate information, and by rudely disclosing my personal information to me loudly enough for others in the waiting room to hear it. I initially allowed myself to be intimidated by nasty-bad receptionists. But soon I tapped deep within my courage bank and told them never to disrespect me again.
I also refused to cooperate with a lab receptionist telling me, for example, that I had to sign a form saying I would pay for my pre-surgery blood tests — all because she received the doctor’s referral electronically rather than in print. I gave her back the blank form, as she stared at me blankly. I then told her I refused to sign it. I also reminded her that she and the rest of the staff at this lab center were always rude to me and, frankly, I was sick and tired of it.
Heck, I even fired a mammogram center for several faux pas. More often than not, the center sent my follow-up mammogram report and films to my surgeon late. To keep myself from slipping through the medical cracks, I asked my surgeon to refer to me to the hospital’s superior breast center for my follow-up mammograms. I achieved his buy-in. From then on, he received reports and films lickety split, and I rested easier.
When medical personnel treat you unfairly and poorly, you can employ civil disobedience. It’s difficult enough to be a cancer patient; you shouldn’t have to endure disrespect and incompetence.
This post is no substitute for medical advice. And I’m not suggesting you should reject sound medical advice and refuse to cooperate with reasonable medical requests.
What I am saying is that you have a voice in your medical care. Despite all the loss of control that accompanies cancer diagnosis and treatment, you still have the power to choose your medical path. Coping with cancer is stressful and horrible. The last thing you need is incompetent and/or cruel staff.
And remember, when it comes to your medical care, you are the major stakeholder. Speak up rather than give up, and you will find you have more control than you ever thought possible.
Beth L. Gainer is a professor at Robert Morris University Illinois, where she enjoys teaching English and Humanities. In July her book Calling the Shots in Your Medical Care will be available. She has made appearances on Huffington Post Live, as well as a variety of other media venues. She blogs at www.bethgainer.com and can be reached at @bethlgainer on Twitter.