New Cancer Patients Having Trouble Retaining Medical Information

A recent study published in The Journal of Clinical Oncology shows that some new cancer patients are having trouble remembering the details of the conversation they had with their doctor concerning their diagnosis. In fact, it was determined that many of these patients remembered less than half of what their doctor had told them. "In general, patients do not hear much of what is said after bad news is delivered," the researchers wrote.

The study consisted of 260 individuals that had been diagnosed with cancer and were attending their first appointment with their medical or radiation oncologist. The average duration of the appointment was 30 minutes and they were all tape recorded.

The study found that patients under the age of 65 were able to recall 49.5% of what they were told by the doctor. Patients over 65 were able to recall 48.4% of what they were told. Older patients were less likely to ask as many question as younger ones, and the people who asked more questions actually retained less of the information. Patients who were given a grimmer outlook on their condition tended to remember less.

Dr. Jay Brooks, chairman of hematology and oncology at Ochsner Health System, suggests that patients bring family or friends to their initial oncologist appointment as it can be an overwhelming experience. It isn’t always possible for a family or friend to be present; however, Brooks suggests that doctors provide each patient with a written copy or audio recording of their pathology reports and the specifics of their treatment plan. The patient is then able to go home and digest all of the information, and then come back 3 to 5 days later to discuss it with their doctor.

The cruel economics of cancer

Within a decade, cancer is expected to surpass heart disease as America's biggest killer.  Currently, the disease strikes one in three Americans and kills one in four; it claims the lives about 1,500 Americans daily.

To combat these climbing numbers, the government has channeled about $75 billion into oncology studies since 1971. But even in the midst of generous funding and tireless research, the cancer death rate has only dropped by 7% over the past three decades. Why?

As this question becomes more pressing, attention is shifting to the FDA and its methods of approving cancer treatments. Some authorities believe the FDA is so wrought with red tape and inefficiency that it is significantly jeopardizing the survival capacity of American cancer patients. A recent study at Tufts revealed that only 8% of experimental cancer drugs receive FDA approval, compared to 20% of medicines for all other diseases. Steven Creel of Austin, Texas, can speak to this problem personally.

Steven was diagnosed with an aggressive form of kidney cancer in 2003. Because he was at high risk of the cancer recurring after surgery, he began to explore other options. Steven entered a clinical trial for the experimental treatment Oncophage and encountered impressive results. Essentially, Oncophage is a vaccine that summons the immune system to fight off cancer cells. "There were literally no side effects. I would have the treatment and then play tennis," he said. Steven has been cancer-free for five years. "I feel very, very fortunate."

Despite success with patients such as Steven, Oncophage--like so many other experimental cancer drugs--hit a wall late in the clinical trial stages. Because of FDA criteria, 124 patients had to be removed from the trial, rendering the results less definitive. Oncophage's developer, Antigenics, suffered a huge financial loss because the study's outcome was consequentially inconclusive; the drug showed an increase in life span for only a small margin of patients--possibly because of the diminished pool of subjects--so the FDA did not deem the improvement substantial. Antigenics uprooted and moved to a country more receptive to their research needs: Russia. Within 10 months, the drug that saved Steven's life but was rejected in America became approved for use in Russia. Now, Antigenics is working the European Union for approval abroad. The company hopes to establish solid financial footing so it can return to America for another round of clinical trials in order to satisfy the FDA.

The FDA knows there is a problem with the slow and infrequent approval of cancer drugs, but is unwilling to adjust trial requirements. Richard Padzur heads the FDA's Office of Oncology Drug Products. Dr. Padzur has garnered criticism for his unrelenting and decisive views on cancer drug approvals, but he insists that the patient's safety and the drug's efficacy are the FDA's top priorities. "Believe me, if there were a clear survival effect, the drug would be approved," says Pazdur.

For many, the solution lies in the manner in which the FDA examines clinical trials. In 2004, the FDA launched the Critical Path Initiative to expedite and streamline clinical trials for cancer drugs, but since 2005 only 18 new treatments have been approved while hundreds wait in the pipeline. Many FDA officials hope to see the agency overhaul its approval methods for cancer medicines, much like it did for AIDS drugs in the '80s and '90s.

To read more on this topic, click here.

Former Chief of Staff remembered through his cancer advice

Hamilton Jordan was the White House chief of staff for President Jimmy Carter. He battled four forms of cancer over 24 years, before dying yesterday from mesothelioma at age 63. Beyond mesothelioma, Mr. Jordan also suffered bouts with non-Hodgkins lymphoma, prostate cancer and skin cancer. He suspected both the lymphoma and mesothelioma were at least partly caused by exposure to the Agent Orange chemical in the Vietnam war.

His experience with cancer, however, taught his to take an aggressive stance against disease. In an undated interview with WebMD, he provided valuable tips for cancer patients:

No. 1: Be an active partner in the medical decisions that are made about your life.

Don’t be passive. Learn about your disease, and participate in the decisions that are made….For example with my lymphoma, if I would have accepted the first treatment offered, I’d be dead today. It was assumed that I only had a mass in my chest. I later learned that the lymphoma was all through my body.

No. 2: Seek and know the truth about your illness, and prognosis.

If you don’t have the facts, and don’t know the truth, you won’t make good decisions. It takes courage to ask questions about statistics and your prognosis.

No. 3: Get a second opinion.

We wouldn’t buy the first computer or cellphone we looked at. Shop around when your life is at stake….I got second opinions on all of my cancers.

No. 4: Determine upfront how broad or narrow your physicians’ experience is.

If you have something that your doctor says, “I’ve never seen this before,” get another doctor. You want your doctor to be very familiar with your disease.

No. 5: If you have a poor prognosis, or a rare form of cancer, try to get to a center of excellence.

If your doctor doesn’t believe he or she can cure you, you won’t believe you’ll be cured.

No. 6: Do not allow your caregivers to project their values, goals and expectations onto you.

In my book I tell the story of a 68-year-old man who was diagnosed with PCa (prostate cancer). And this man is in very good health other than the PCa. His 35-year-old doctor reasoned that since his life expectancy was only five or six years, that he recommended that the man do nothing for his PCa and told him it would take the PCa four or five years to kill him. This man wanted to live to be 80 or 85. He didn’t accept that. He had his prostate removed, and many years later he’s in good health, and probably will live to be 80 or 85. Don’t let your doctor project his or her expectations in life out on you.

No. 7: Understand the economics of cancer care.

You don’t want to be in a situation where your doctor wants to run a $150 test that your insurance doesn’t cover, but it contains critical information for making your diagnosis or deciding treatment. You need to understand what your insurance covers, and let your doctor know what you’re willing to do to supplement that coverage to get a good diagnosis, and the best possible treatment. If your doctor says that he wants to run another test, but insurance won’t pay for it, find out what it is. Why does he want to run it? Find out the cost, and determine whether you should pay it yourself. It might save your life.

No. 8: Ultimately, find a doctor that you trust and believe in.

Find a doctor with a fighting spirit, and who thinks that they can cure you. You tend to find doctors that reflect your own attitude. I always found doctors that liked the fact I was aggressive and going to fight for my life. They didn’t object to my asking a lot of questions.

No. 9: Treat your mind as well as your body.

Just because we can’t quantify, and don’t understand the power of the mind, to deal with disease, it doesn’t mean that attitude and the will to live is not a powerful, powerful force in the course of an illness.

No. 10: Your attitude and beliefs are your most powerful weapon against cancer.

I believe that deeply. There have been studies that show when you are happy and engaged and positive, your immune system is at its strongest. When you are depressed or unhappy, your immune system is weakened.

More information can be found in Mr. Jordan's 2001 memoir, "No Such Thing as a Bad Day."