In my last post, I responded to an article in the NYTimes Well Blog by Emma Pierson, who shares how learning she carries a cancer gene has transformed her life.
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?
On the NYTimes Well Blog, 21-year-old Emma Pierson eloquently shares the impact of having learned she carries the BRCA1 mutation, a finding associated with a 98% chance of developing cancer in her lifetime. You'll read how...
Yesterday's NYTimes article about the 11th-hour rescue of a dying 6-year-old girl with an investigational treatment created a lot of buzz. Here are a few reflections on the story that might be useful to Healthy Survivors.
A front-page story in today's Science Times poses a provocative question in the rapidly changing world of medical diagnostics: Can computer software ever replace physicians to ensure timely, correct diagnoses?
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.
Yesterday's post linked to an editorial by two well-credentialed psychiatrists with special interest in end-of-life care. Their studies led them to consider grief as "the state of emotional unrest and frustration associated with wanting what one cannot have."
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 case of the FDA revoking approval of Avastin for the treatment of breast cancer is complicated by the urgency of the need for better therapies. We’re not talking about treatments to decrease the sniffles of the common head cold. At issue is a drug to help patients who are suffering -- and dying -- from metastatic breast cancer.
Here at the 2011 Life Beyond Cancer Retreat in Austin, Texas, a recurring theme in workshops and during meals has been the challenge of living with a heightened sense of uncertainty.
In a provocative 242-word essay -- Interruptions -- that prompted my November 13th post, Lucy Stanovick fishes for information about how hopeful her oncologist feels regarding her recovery. Is her doctor trying to cure or contain her cancer? Or just to keep her comfortable?
Many patients struggle with uncertainty about what's happening now, what will happen in the future, and what they should do. Having dealt with illness-related uncertainty on both sides of the stethoscope, I've developed an approach that has helped me deal with my heightened sense of uncertainty in healing ways.
My recent posts have discussed some of the difficulties of modern medical decision-making in the context of PSA testing for prostate cancer. A new book by Harvard oncologist Jerome Groopman and Harvard endocrinologist Pamela Hartzband offers help to Healthy Survivors: Your Medical Mind: How to Decide What is Right for You.
Yesterday's post highlighted the controversy about screening healthy men for prostate cancer using the PSA test. The media does the public a disservice by claiming such testing does not save lives. It does. The issue is: at what price?
Patients are not Healthy Survivors if they believe the promises of charlatans. What about patients who receive treatment from of team of professionals at a major university in a clinical trial that turns out to be based on wrong information?
Like Randy Pausch of The-Last-Lecture fame, Derek Miller loved his life and was ready to die. Only 41 years old, Miller prepared his last blog post to be published after he died of stage IV colorectal cancer, leaving behind a beloved wife, two precious daughters and extended family and friends.
In yesterday's post, I shared a short story that has changed my life. Ever since I first read it, when unwanted change or loss seems to be ruining everything, I've thought, "We'll see."
My 1/14/11 post refers to a post -- Why We Quit -- by a Buddhist physician who believes we quit when we can no longer avoid paying attention to the idea of quitting. He recommends building resilience by "trying again, no matter what the reason you failed before."
When it comes to understanding cancer relapse, what is the significance of a cancer stem cell? According to a recent article by oncologist Siddhartha Mukherjee, maybe everything.
On my recent post about clinical trials, commenter Steve Walker wrote, "The Phase III trial is being run primarily to satisfy the rigid, formulaic and in many cases scientifically obsolete requirements imposed by the FDA's Office of Oncology Drug Products for most cancer drugs...."
In Phase I trials researchers test an experimental treatment in a few patients for the first time. The purpose is NOT to see if the treatment kills cancer cells, but only to:
evaluate the drug's safety
determine a safe dosage range
identify side effects
What if the patients in a Phase I trial experience shrinkage of their tumors? Should this speed up FDA approval of the trial drug?
My last post introduced a dilemma regarding modern clinical trials: Is it ethical to randomize some patients to the "control arm" of a trial where they will NOT receive the trial drug?
According a NYTimes article, one particular trial of a therapy (called PLX4032) for malignant melanoma "ignited an anguished debate among oncologists about whether a controlled trial that measures a drug's impact on extending life is still the best method for evaluating hundreds of genetically targeted cancer drugs being developed."
Great progress has been made in linking disease to mutations in certain genes. So why the sudden brouhaha at the FDA about companies selling gene-testing kits directly to consumers?
How can Healthy Survivors get good care -- the first criterion of Healthy Survivorship -- if the data needed to make sound choices in their particular situation is not yet available?
Recent posts (June 22, 23, 25 and July 4) have dealt with the risk of carotid artery disease following irradiation of the neck for cancer. I made suggestions without explaining the back story that led to my conclusions. Let's look at how I came to my conclusions.
In a piece entitled"The Genes That Bind" (summer issue of CURE magazine), Journalist Charlotte Huff covers the emotionally charged topic of when and how to share information on genetic risk with children.
How did I go from rattled to relaxed in a matter of hours after learning about my risk of carotid disease due to radiation therapy I received 18 years ago? First, by putting the piece of information in perspective, as outlined in my last post. Second, by making a plan of action.
In yesterday's post, I shared how I learned about my increased risk of carotid artery disease due to my past radiation therapy. So how did I get from rattled to relaxed? My thoughts went something like this:
I've been following a provocative blog, Musings of a Distractable Mind, hosted by primary care physician Dr. Rob Lamberts. His recent post entitled "10 Rules for Good Medicine." offers food for thought about modern healthcare. Here is a sampling, with my commentary added:
On January 26th I blogged about the risk of patients being accidentally injured by overdoses of therapeutic radiation therapy. I brought it up for many reasons, one of which was to lead into a post of mantras for dealing with bad news. Another was to point out that "bad" news can lead to good news.
A trying time of survivorship is the interval between knowing you might have a problem and learning your exact diagnosis. Why? Because you can't reassure yourself you are okay - or are going to be okay - if doctors are ordering tests for the purpose of finding out if you are okay or are going to be okay.
Pastor Carlos Wilton refers to a quote by Friedrich Nietsche, "That which does not kill us makes us stronger." Wilton, a survivor whose lymphoma is currently stable, says, "Those who have the audacity to believe in the resurrection can attach a little addendum to that saying: Even the thing that one day kills us will do the same."
When something goes wrong, people often conclude somebody did something wrong. Or that everybody did everything right, but the original decision - the choice that led to the problem - was wrong. But these may be the wrong conclusions.
Patients and the healthcare team can do everything right, and things can still go wrong.
Empathy is the ability to understand and vicariously experience the feelings of someone else. This skill is adaptive, helping you respond to another person's needs in healthy ways.
With the rise of support groups -- and now Internet chats and blogs -- patients sharing similar problems can easily seek out and find each other. And they do. So can a Healthy Survivor ever have too much empathy?