Wendy Harpham on Healthy Survivorship

Choosing Wisely Campaign - Part II

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.

Problems with Generics

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?

Revoking FDA Approval: Conclusion

The FDA revokes approval of Avastin for breast cancer. What's a survivor to do?

Revoking FDA Approval: Right or Wrong? - Part VIII

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.

Revoking FDA Approval: Right or Wrong? - Part VII

Let's tease apart some of the sticky-wicket issues of FDA approvals and revocations. For one, how does the FDA measure success?

Revoking FDA Approval: Right or Wrong? - Part V

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:

Revoking FDA Approval: Right or Wrong - Part III

In my November 28th and December 3rd posts I introduced the media storm regarding the FDA's recent revocation of approval of Avastin for the treatment of breast cancer. Today I'll provide an overview of the FDA approval process to help us talk about the controversy.

My Bad?

My August 6th post shares a report on a new technology for breast cancer screening. I confess: I did not check out the story.

From Promise to Disaster

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?

2011 Cancer Resource Guide

Cure in association with the American Cancer Society has published a superb booklet for people with cancer: the 2011 edition of their Cancer Resource Guide.

Healing after a Doctor Visit Gone Awry - Part II

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:

Healing After A Doctor Visit Gone Awry

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.

Free Toolbox

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.

Helping Misguided Survivors

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.

Testing a Fast Track to Rx

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?

The Problem with Accelerated FDA Approval

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?

Anguished Debate on Witholding Rx for the Control Arm

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."

Witholding Rx in Clinical Trials

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.

Researching Clinicial Trials

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:

The Treatment Option You May Be Missing

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.

Open Notes: "Our" Chart

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?

The OpenNotes Project - Why Do We Need It?

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.

HON

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.

Caveat Emptor re: Genetic Testing

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?

Doing My Best Post-Radiation

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.

Late Effect of Radiation - Qualified

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.

Reacting to Post-radiation Risks

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.

Dealing with Post-radiation Risks

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:

"Right" or "Best"

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?

Last Acts

"Imagine you know you have only a few months to live. What would you do with your remaining time?"

PSA Conundrum

Imagine being diagnosed with cancer and having your doctor recommend you not undergo treatment and, instead, "Watch and wait."

What? Do nothing but watch and worry?

Rob Pardi Responds

My April 6th and April 11th posts focused on a  NYTimes story about Dr. Desiree Pardi, a palliative care physician who refused palliative care when dying.

Today let's look at her husband's view of the article. Robert Pardi's comments were posted on Pallimed to enrich -- or shall I say, to straighten out -- the discussion about his wife's decision. Although he doesn't use the term, he's telling us his wife was a Healthy Survivor. 

Do I Need a Specialist?

After being diagnosed with a disease, many Healthy Survivors ask, "Do I need to see a specialist to get good care?"

White Coat Hypertension

White coat hypertension (white coat syndrome) is when patients' blood pressure (BP) readings are high in clinical settings and normal in other settings.

Palliative Care

In my April 6th post I discuss the case of Dr. Pardi, a palliative care physician who chose to continue aggressive cancer therapy when she was dying. Letters to the editor about the article don't mention what I consider to be a key point.

Stopping Treatment with Hope

Commenting on a recent post, "Talking About Death,"Judy, an experienced hospice nurse, shares two illustrative experiences with end-of-life care -- one good, one awful.

A question came up: "What should an oncologist do if the patient and family insist on more treatment so the patient won't lose hope?"

Talking About Death

Discussions about end-of-life can benefit patients and their families in dramatic ways. Unfortunately, the emotional discomforts for both physicians and patients often serve as insurmountable obstacles to initiating these important discussions. 

A study at the Dana-Farber Cancer Institute and reported in JAMA may help.

Valuing PCPs

What does it mean to "value" the time and expertise of primary care clinicians (PCPs)?

CISCRP

Huh? CISCRP? Is that a word?

No, it is the acronym for a non-profit organization I'd like to highlight. Then you'll have it in the back pocket of your brain in case you ever need it for yourself or someone you love.

Update on Radiation-based Medical Scans

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.

Lost in Translation

Let's stop and think about one of the great challenges of being a physician: translating.

Too Upsetting

Healthy Survivors use language that helps them get good care and live as fully as possible. In the case of challenges, it is usually better to say "very" instead of "too." For example, "This newspaper article is too very upsetting."

What if a topic really is "too" upsetting? What's a Healthy Survivor to do? 

Mantras for Upsetting News

Yesterday's post introduced a front-page NYTimes story about the risks of receiving the wrong amount of radiation when undergoing treatment for cancer.

Facing End-of-LifeTalks, Doctors Choose to Wait

In last week's Science section of the NYTimes, Denise Grady reported on a recent study in which most of the doctors who responded to a survery indicated they would wait until their terminally ill patients felt worse or were out of options before talking about end-of-life care, such as hospice.

I was moved to write a letter to the editor (p.D4 or click here) when I read one of the possible reasons cited: fear that patients will lose hope or that physicians will “yank away” hope by talking about end-of-life wishes.

The Pain of Practice-Changing News

News Flash: "The results of a study prove a promising new treatment to be less toxic and more effective than today's standard therapy. Experts are calling these results 'practice-changing findings.'"

While most people rejoice, some feel upset. Why?

"Ask" or "Suggest"?

A patient learns about a treatment for his condition. So he goes to his physician to suggest the treatment as an option. Is there anything wrong with that?

Watch and Wait

When patients with serious diseases are being cared for expectantly, they often scoff at the standard medical discriptors: "Watch and Wait" or "Wait and See." For them, a phrase that better captures the experience is "Watch and Worry" or "Worry and See," circumstances not conducive to Healthy Survivorship.

When "And" Means "Or"

Facing Facts, At Least Briefly generated some discussion about patients who don't want to know if they are dying because they don't want to ruin their quality of life. This leads to a more general quandary: What if getting good care makes it impossible to live fully, and what if living fully makes it impossible to get good care?

Facing Facts, At Least Briefly

Right or Wrong? extols the benefits of good communication between doctors and patients. But what if a patient makes the request, "Doctor, if a time comes that I'm dying, please don't tell me I'm dying." 

It seems a reasonable request, if knowing "would only increase my anxiety and make it impossible for me to hope for future better days," as described in the post's comments by Bint Alshamsa. 

Right or Wrong?

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.