Are you a believer or a doubter, when it comes to modern medicine?
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.
In a few clinical situations, patients with a potentially curable low-risk cancer have the treatment option of active surveillance. What is active surveillance and what are the challenges of pursuing that option?
My September 15th post in response to Penicllin Allergies Overblown introduced the problem of physicians over-prescribing broad-spectrum antibiotics when penicillin would be the more appropriate drug.
Two patients with the exact same tumor have different outcomes. Why?
Five hundred years ago, a 3-centimeter lump in one patient that looked and felt identical to that of another patient was considered the same tumor. Yet one patient did well and the other died.
With progress in science, doctors determined that tumors that look alike to the naked eye can look different under the microscope. Tumors were lumped together if they looked alike, felt the same, and had the same microscopic appearance. Yet still some patients did well while others died.
With progress in science, doctors determined that tumors that look alike under the microscope can have different surface proteins (antigens). Tumors were lumped together if they looked alike under the microscopic appearance and shared a specific array of surface antigens. Yet still some patients did well while others died.
This 3-minute video Gene Breakthroughs Spark a Revolution in Cancer Treatment explains how genetic markers are helping researchers separate seemingly identical tumors into those that might respond to a specific treatment and those expected not to respond.
It's a new way of thinking about cancer. What really matters? Where a cancer began? Or that it has genetic markers that indicate susceptibility to specific treatments?
If you remember only one thing from this post, may it be this: Well-funded and well-executed research is the only way to uncover truths about treating cancer.
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.
You can hate math and not give a whit about statistics. But if you care about your health, you will finish up your summer reading with a fantastic new book: Naked Statistics. Stripping the Dread from the Data.
We're talking about what it means to "let go." Because if patients run out of treatment options or they are nearing death, "letting go" plays a major role in Healthy Survivorship. So here's another definition:
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?
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.
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?
The FDA revokes approval of Avastin for breast cancer. What's a survivor to do?
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.
Let's tease apart some of the sticky-wicket issues of FDA approvals and revocations. For one, how does the FDA measure success?
Now let's look at the players who influenced the FDA's decision to revoke approval of Avastin for breast cancer. The complex process requires a book-length manuscript to fully explain. Rather than abandon my effort, here are the bare bones:
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?
There is no one right way to obtain knowledge, nourish hope or take action. So, too, there is no one right way to heal a rift between you and your physician.
But there are good ways -- and maybe even a best way -- for you and your physician. What follows are my suggestions to the patient who, at her last doctor visit, raised her voice in frustration:
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.
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.
On my January 28th post, Lori commented about one's obligations to survivors whose belief in the power of positive thinking precludes their getting effective therapies.
Recently, I've pointed out the clashes between business and ethical considerations and beween clinicians' obligations to their individual patients and to the method that leads to advances. What if researchers can find ways to satisfy both the science and today's patients?
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:
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."
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.
People who hear my story often say, "You had an advantage getting into those clinical trials, because you were a doctor with connections." Given the paucity of patient-centered resources in 1993, this was true.
Today a plethora of excellent resources can help patients and families learn about clinical trials and find any available trials that might be right for you. Resources include:
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.
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 (IT).
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.
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?
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.
Tags: late effects, post-treatment cardiovascular disease, premature carotid disease, radiation therapy and risk of stroke
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)
Tags: carotid disease, late effects, post-radiation
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:
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?
"Imagine you know you have only a few months to live. What would you do with your remaining time?"