Patient empowerment is intended to help patients. Like any power, it can harm.
Making the best medical decision for you is vital to Healthy Survivorship, and not only because doing so optimizes your chance of the best outcome. If you end up with a disappointing treatment result, your prior decisions affect--and may determine--your happiness.
What if an app could help improve (1) survival in cancer patients, (2) patients' quality of life and (3) the cost effectiveness of cancer care?
What's challenging about reporting minor symptoms? They're less frightening. Shouldn't they be easier to report?
After someone has been through cancer treatment and recovery, a new mild symptom is no big deal, right? Well, maybe. In the next few posts, we'll explore the difficulty of reporting minor symptoms in long-term survivors (LTS) who want to be Healthy Survivors.
If you ever wondered if you might be at increased risk of cancer because a family member has or had cancer, this book is for you: A Cancer in the Family by Theodora Ross, MD, PhD.
Colonoscopy naturally makes you think of all the inconvenience and yuck. Here’s the problem: If you compare the colonoscopy experience to your normal routine, you might be tempted to delay (or decline) the cancer screening test.
Dr. Paul Kalanithi's spectacular writing is the vehicle for sharing his clear and useful insights on facing death.
After the release of Kalanathi's best-selling book, When Breath Becomes Air, a NYTimes interview with his widow, internist Dr. Lucy Kalanithi, sheds light on the role writing the book played in their shared experience with his dying and her experience with moving on.
In medical situations where letting something go is a necessary step to Healthy Survivorship, the act of letting it go is an act of empowerment. So, too, in situations where letting something go is the healthiest option
The event provides a stage to honor my extraordinary survival—and everyone who has played a role in it. The public display, like an annual booster shot, immunizes me from taking any of it for granted.
One morning earlier this summer, I was poised to do some writing in a crowded waiting room at my car dealership when my sister called me. "Can you talk?"
My August 14th post responds to Scientists Seek to Rein in Diagnosis of Cancer, in which Tara Parker-Pope discusses the recommendations of an NCI panel that some premalignant conditions should be renamed to remove the word "cancer" or "carcinoma." The move was prompted by concerns about patients being over-diagnosed and over-treated, a problem for both Healthy Survivors and public health.
For some people, the issue is money. Increasing the use of tests and treatments helps those on the prescribing/delivering side and hurts patients and insurance companies footing the bill. They object to lobbyists and politicians having any say in determining what's best for patients.
As a Healthy Survivor, I believe the fundamental issue is captured by a Memorial Sloan Kettering oncologist, Dr. Norton: "...doctors do need to focus on better communication with patients about precancerous and cancerous conditions. He...tells patients that even though ductal carcinoma in situ may look like cancer, it will not necessarily act like cancer — just as someone who is “dressed like a criminal” is not actually a criminal until that person breaks the law.
I've devoted much of my writing life to demonstrating how substituting one word or phrase can make a world of difference to patients. Yet I still believe that changing the language cannot replace effective communication.
If dealing with the uncertainty and high stakes of a potentially life-threatening disease that requires life-altering treatment, nothing replaces the time-consuming weighing of risks and benefits for the individual and developing a personalized plan of action.
Here's the dilemma: Your loved one wants to drive, saying, "I feel fine." Your loved one's doctor said (s)he cannot drive until cleared at the follow-up visit that is still 2 weeks away. What do you do?
Yesterday, Dr. Mikkaela A Sekeres addressed, "Keeping Cancer a Secret." He was prompted to write the essay after learning that a patient had been keeping his diagnosis of myelodysplastic syndrome [a pre-cancerous condition] a secret from his grown children and their children.
The patient explained, “'Our son has been away, doing a couple of tours of duty in Afghanistan,” he said. “We were going to tell our daughter, but. …” He paused, trying to find the right words. “It wouldn’t be fair, for her to know, to have this burden, and not him. We were planning on telling them when we’re together over the holiday.'”
Dr. Sekeres offers a few possible reasons, including "'sometimes the one thing that we can control is whom we tell...Some [reasons] are very personal (it’s my body, and what goes on inside it is my business). Some are professional (the screenwriter Nora Ephron kept her myelodysplastic syndrome a secret because she feared that no insurance company would sign off on any movie she tried to make). And some are altruistic (we don’t want others to bear the emotional weight of knowing).'"
His conclusion? "It’s our job, as doctors and nurses, to be deliberate in asking our patients how they will explain their cancer to others, to make sure they understand. Keeping such a diagnosis hushed, a secret from those who love and care for us, is an unfair burden we shouldn’t allow cancer to dictate, too."
Next: Do Healthy Survivors ever keep such secrets?
In her book, When a Parent Has Cancer: A Guide to Caring for Your Children, author and cancer survivor Wendy Harpham, M.D. stresses the importance of...regular routines.
Months ago someone emailed me a request to read his new cancer memoir. If someone trying to help others asks me for help, I usually say "yes." So a few days later, a review copy arrived.
Unfortunately, after reading it and before reviewing it, I misplaced it.
For cancer patients who run out of treatment options, how can "letting go" help in the pursuit of Healthy Survivorship? How can it hurt?
Faced with "the cruel weight of a paradox: you can never know whether you want to know until you already do," what do Healthy Survivors do?
Dr. Nuland opens Chapter 2 of How We Die saying, "No one dies of old age, or so it would be legislated if actuaries ruled the world." Later in the chapter he introduces a perspective on aging that can serve Healthy Survivors well.
A study designed to determine risks associated with hospitalization and delirium in patients with Alzheimer's Disease (AD) contains important lessons for Healthy Survivors.
For years, my elevator speech when asked about my work has been, "I explore, write and speak about how modern patients get good care and live as fully as possible."
Last week someone responded with a question, "Wendy, what do you mean by a 'modern patient'"?
Up-to-date, science-driven guidelines on nutrition and exercise after cancer were published in the April 12th issue of Ca - A Journal for Clinicians, a publication of The American Cancer Society. Although addressed to healthcare professionals, the material is accessible to patients (free, online) and includes a section written specifically for lay readers.
In my last post, I introduced the Choosing Wisely™ campaign, an effort by clinicians to avoid overuse or inappropriate use of tests and therapies. Obviously, a successful campaign would save lots of money. But the campaign is motivated by a higher goal that reflects the mission of Healthy Survivorship.
Did you know that when you take a generic drug, you essentially forfeit the ability to sue the company making the drug for damages if you experience an adverse event?
James C. Salwitz, MD doesn't use the term Healthy Survivor. Still, the story he tells offers a name and face to the idea that patients in difficult circumstances can find Happiness in a Storm.
Usually I refrain from criticizing human interest stories or online videos, instead staying focused on all that is good and right. But today I'm making an exception because I know what the person interviewed meant, and I want to clarify.
Illness is often associated with loss, even when the medical outcome is excellent.
Since prolonged grief is associated with distress and dysfunction, an understanding of healthy ways to deal with loss may propel patients' pursuit of Healthy Survivorship -- and happiness. Reading a 2008 editorial in the British Journal of Psychiatry might further this understanding.
In my January 21st post, I shared a vignette that illustrates the notion that what you hope for affects whether your hope helps or hurts you.
Now let's look at the challenge of coping with the evaluation of a worrisome symptom. What can Healthy Survivors hope for?
In yesterday's post, I shared my reaction to a rant found on a cancer-related listserv. I explained my concerns regarding such expressions of anger, disappointment and frustration.
So what are Healthy Survivors to do if, for example, they learn they had not received important information about aftereffects of treatments they received?
A recent thread on a cancer listserv included the rants of listserv members who were angry they hadn't been better warned about the possibility of developing aftereffects. This is a problem.
During my first remission I began work on After Cancer, a book to help patients understand and respond in healthy ways to the medical, practical and emotional challenges of recovery and long-term survivorship. The subtitle was Your Guide Back to Normal.
But as I struggled with my own aftereffects and then recurrences, I realized my original approach wasn't going to work well for me.
The FDA revokes approval of Avastin for breast cancer. What's a survivor to do?
An interesting press release from the University of Texas supports my long-standing contention that it is better to ask a patient, "How are things?" than to ask "How are you?"