What could be wrong with IBM's supercomputer "Watson" helping physicians care for patients?
What could be wrong with IBM's supercomputer "Watson" helping physicians care for patients?
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...
Most pages of my copy of Nuland's How We Die sport underlinings and check marks. On page 72, though, I drew a big question mark in the margin beside a paragraph that preceded another that earned a "great insight!"
After a cancer diagnosis, patients ask, "What should I eat? What foods should I avoid?
The answers found in magazines and offered by clinicians and purveyors of alternative therapies often paint a confusing picture of contradictions.
A study designed to determine risks associated with hospitalization and delirium in patients with Alzheimer's Disease (AD) contains important lessons for Healthy Survivors.
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.
The preceding four posts on grief and acceptance set the stage for a closer look at how patients can be Healthy Survivors at the end-of-life. In other words, how can you both get good care and live as fully as possible after a diagnosis of terminal disease?
The FDA revokes approval of Avastin for breast cancer. What's a survivor to do?
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?
One of the purposes for this blog is to bring attention to high-quality resources to help educate and empower Healthy Survivors.Today I'm shining the spotlight on CURE. Not only is this a superb magazine for cancer survivors and their caregivers, it is also free.
Although I didn't have a magic answer for the patient in my last post who emailed me about her doctor visit gone awry, I was able to offer her some thoughts about moving forward as a Healthy Survivor.
Walking down the jetway, I hear a woman's voice behind me, "Umm, excuse me. May I ask if you work in the sun?"
The man behind me answers, "Huh? I work inside, but I play outdoor sports."
With a micro-chuckle of embarrassment, the woman says, "Gosh, I hope you don't think I'm crazy or overstepping my bounds, but were you aware of the black spot on your earlobe?
We are not born knowing how to become Healthy Survivors. We aren't taught in school how to get good care and live as fully as possible when living with, through and beyond cancer or other serious illness. I wish we were.
My last post offered tips for recognizing stigma. My key message was that Healthy Survivors have a right to choose whether or not they advocate to destigmatize the disease that has become part of their life.
Today I'll tackle the challenge of dealing with this stigma.
Your doctor dictates into your chart, "The patient is tolerating treatment well." Huh? After every treatment you feel nauseated, lightheaded, weak, headachy and, in a word, miserable. What does your doctor mean by "tolerating treatment well"?
When symptoms or signs are not dramatic, patients often find it stressful to decide whether or not to call the doctor or go straight to the emergency room. As a patient, I found it more stressful when a new problem put me in what I call "the gray zone" than when a sign or symptom was clearly a serious problem demanding immediate attention.
What's a Healthy Survivor to do?
For smokers, snubbing out their last-ever cigarette is a key element of "getting good care" in their pursuit of Healthy Survivorship. But smokers often feel miserable while quitting, enough that most relapse.
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...."
Is the randomized clinical/controlled trial (RCT) obsolete?
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."
Sunday's NYTimes ran an article tackling a complex ethical dilemma in cancer care: The witholding of treatment in clinical trials. Because I was treated in 3 clinical trials in the 1990s, the topic is close to my heart.
As a scientist, I credit clinical trials with advancing our understanding of cancer and ability to treat it effectively. As a patient, I credit clinical trials with playing an essential role in my survival.
From both perspectives it troubles me greatly that only ~3% of adult cancer patients participate in clinical trials.
For me, the crux of the problem is this: Do open notes conflict with the ideal of compassionate care?
My recent posts set the stage for asking: Does the opportunity for patients to read their medical charts help or hurt patients' ability to become Healthy Survivors?
In my August 9th post, I introduced you to the OpenNotes project. If you are wondering why we need the study, here is a two-word answer: informational technology.
Have you ever read what your physicians and nurses have written in your medical chart? If not, would you want to?
For the next few posts, we'll explore the OpenNotes project in the context of Healthy Survivorship.
In Razing and Rising, I mention that Healthy Survivors "seek guidance and support." What if you've never needed professional counseling before?
Patients wanting to learn about their illness used to search high and low for a few drops of patient-centered information. The dilemma for modern patients has become how to sort through the flood of information available on the Internet.
HON certification can help.
A friend from my early survivorship days -- another physician and lymphoma survivor -- is dealing with a new problem: mesothelioma. Mesotheli-what?
The post entitled "Mesothelioma" was under construction. The final post was published as "Mesothelio-what?"
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?
When I was first diagnosed, my medical background made me more prepared than most for the physical and emotional challenges of cancer treatment. What blindsided me were the medical and emotional issues that arose after completion of treatment.
In the newsletter of the Texas Chapter of the American College of Physicians, Dr. Steve Urban shares an important concern about Electronic Health Records (EHR).
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?
We need to revisit a prior post, so I can qualify what I said. On my June 22nd post, I mentioned the high incidence of changes in the carotid arteries in patients who received radiation years earlier. But I didn't provide any details.
Posted at 08:16 PM in Action, Clinical Trials, Dictionary of Healthy Survivorship, Doctor-Patient Communication, Happiness, Healthy Survivorship, Knowledge, Post-treatment Recovery, Science, Treatment Decisions, Uncertainty | Permalink | Comments (0) | TrackBack (0)
Many of my friends and family assume that the further away I get from the mini-mantle irradiation I received in 1992, the more I can relax about my developing any complications of that treatment. Not so.
What a three days I've had here at the 2010 Biennial Conference. While packing my suitcase for the return home, I'm thinking about all I've heard.
Posted at 09:19 AM in Action, Clinical Trials, Dictionary of Healthy Survivorship, Doctor-Patient Communication, End-of-Life, Family illness, Finances, Health care system, Healthy Survivorship, Hope, Knowledge, Post-treatment Recovery, Science, Uncertainty | Permalink | Comments (3) | TrackBack (0)
Healthy Survivors make the best decisions, not the right ones. They take the best steps, not the right steps. Right? Best? Is there any difference?
When I was a child, I thought people over 40 years of age were very old. I believed they were done growing up and knew everything one needs to know. Wrong.
Now over 50 years old, I often say, "I'm a work in progress."
White coat hypertension (white coat syndrome) is when patients' blood pressure (BP) readings are high in clinical settings and normal in other settings.