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Cancer Survivors Need the Truth and the Whole Truth Upfront

Long-term survival can mean serious biological changes.
When you get a cancer diagnosis, the first few weeks are a whirlwind. There are tests to be done, doctors to be seen, information to be conveyed and plans to be made. As a patient, you are so in shock and trying so hard to focus your mind on what the doctors are saying that you don’t focus a lot on any other issues—like what your life will be like once your treatments are finished. All you care about — all you can think about — is “Get that cancer out! Get it all out!”

It’s not hard to ignore the question of what happens after that, because among all the things doctors discuss with you at such times, the long-term effects of the treatments they are proposing are almost never discussed—and if they are, they are very seldom discussed in depth. At one point or another, the cancer patient hears or reads in the rah-rah, patient-oriented literature the happy catch-phrase: “your new normal.” By referencing what life was like before cancer (“normal”), the phrase conjures up images of a return to that normality. Maybe minus a prostate or a section of colon or a breast…. Maybe with a risk for lymphedema. Hence the “new.” But otherwise, a return to your old self, your old life.

However, the “new” in “new normal” includes a lot of other changes that many cancer survivors experience but are not warned about. And they may preclude a return to your old life. Prominent among them is fatigue. Not “tiredness” like you get when you’ve worked hard doing yardwork all day, but “fatigue”—a condition of diminished ability to function at your customary level and duration due to physical weakness and exhaustion that is unrelieved by rest.

The medical lit says about a third of survivors complain of this. Most doctors implicitly or explicitly say it’s the patient’s fault for not being active enough and say the best remedy is for them to get up off their duffs and exercise. If the patients are female, there is a disproportionate chance that the diagnosis will be not just sloth, but also some psychological issue like depression or anxiety.

Under no circumstances will the oncologist look you straight in the eye and say, “Yes, our treatments caused this. It’s a long-term side effect that some people have. We don’t know much about it, yet, but it appears to be permanent. I’m really sorry, but it’s the price of your being alive at all right now. You’re going to have to figure out how to move forward with this situation. If I can help you with that, please let me know.”

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
Brenda Denzler is a writer and editor living in North Carolina. She received her doctorate from Duke University and worked as an editor at UNC-Chapel Hill before she was diagnosed with inflammatory breast cancer in 2009. Since then, she has devoted a great deal of her time and energy to understanding and writing about cancer, cancer treatment and the impact of pre-existing PTSD on the ability of doctors to give and patients to receive medical treatment.
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