Don't Confuse Me With The Facts

As a former hospital executive and a long time researcher in the field of consumer health behavior, I tend to look at things differently than many of my colleagues in healthcare. Call me contrarian.

The American Cancer Society for example just released the findings from a study in which 957 adults were asked if they agreed with what turned out to be 12 myths about cancer. Turns out, according to Kevin Stein, the director of the Behavioral Research Center at the American Cancer Society, “misconceptions about cancer are rampant among Americans…particularly when it comes to cancer risks.”

What got my attention was where researchers seemed to chide those of us people who believe that the risk of dying from cancer was increasing. Turns out, a full two thirds of US adults happened to believe this is the case. Count me in, because it sure feels to me like too many people continue to die from at least the more virulent forms of cancer, including lung and pancreatic cancer.

There is an expression among marketers, that perception is the equivalent of fact. In other words, if you believe something to be true, it might as well be true because you are going to behave as if it were. Given that, what’s so wrong with people believing that they are at increased risk of getting cancer?

According to the Health Belief Model, one of the grand daddy tools that shaped much of today’s health education efforts, a person has to believe that they are at risk of getting a condition in order for them to take action. It would seem therefore that we would want more people to be concerned with their risk of getting cancer rather than the other way around. Why? Because more people would get screened, more cancers detected early on and more lives saved…except of course for lung cancer where conventional wisdom argues that there’s no sense screening for a cancer for which there is no cure.

Chances are too, that what experts dispel as a “myth” today will undoubtedly become a “fact” tomorrow. We have all seen this happen often enough to become skeptics of the health experts.

I for one would like to see the American Cancer Society focus more efforts on detecting cures for lung cancer rather than confusing people with data which, while true, contribute little to fighting what continues to be a deadly disease for too many people.

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Cancer Care In The US Has A Long Way To Go It Seems

When I decided to write a blog about cancer, I thought it would be pretty easy. After all, my wife and I have been living with it for some three years come this Fall. And then there is the endless stream of great cancer research that anyone can track by simply signing up for an RSS published by the New York Time or so on.

What has surprised me, or should I say disturbed me, is how variable the quality of cancer care is in the US among cancer doctors and hospitals. No, let’s call a spade a spade. What has scared me is how bad the quality of cancer care in the US can be at the local hospital level. How else could you explain the comments of Dr. John H. Glick of the Abramson Cancer Center at the University of Pennsylvania who finds that he typically recommends major changes in the treatment plans of 30% to 40% of patients seeking a second opinion, and minor recommended change in an additional 30% of the patients.

An article by Diane Grady in the July 29th issue of the New York Times reminded me how bad the state of affairs really is with respect to cancer care in the US.

I was surprised to find out for example that it has only been within the last two years that cancer experts across the US came together to agree upon standard treatment guidelines for the most common cancer conditions. But having guidelines and getting cancer doctors to agree to not to mention follow the guidelines is an entirely different matter.

Here’s what I mean. According to the New York Times article, “among women with breast cancer, 15 to 25 percent who should have radiation do not receive it, and 20 to 30 percent do not take the anti-estrogen drugs that are a mainstay for most patients.”

But wait, things are even worse for early stage patients diagnosed with one of the most deadly cancers – pancreatic cancer. According to a study released this June by the American College of Surgeons, 38 percent of patients who were eligible for (by treatment guidelines) and could have benefited from surgery were not even offered it by their doctors.

Apparently the same is also true for ovarian cancer. Dr. Barbara Goff, a gynecologic oncologist at the University of Washington in Seattle is quoted in the New York Times article as saying “a third of the women in the United States are not getting the right surgery, not even close…we have so many resources, but we still do so poorly with ovarian cancer.”

I could go one with the statistics. But I think you get the point. Cancer patients and caregivers like me, and many of you, really are on our own when it comes to navigating the cancer care delivery system in the US. Sure my wife finally found the right doctors and the right treatments allowing her to remain cancer free for now. Many of you too hopefully have had similar positive outcome. But I bet that like my wife and I, it probably didn’t come easy for you either. Like us, you no doubt had to fight your local doctors and hospitals to end up where you are today.

What I want to know is why does it have to be this way? Anyone else have an opinion?

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Want To Increase Your Odds Of Remaining Cancer Free Following Prostate Cancer Surgery? Start By Finding A Highly Experienced Surgeon.

Prostate cancer is the most commonly diagnosed cancer among American men. According to the American Cancer Society, there will be about 219,000 new cases of prostate cancer in the United States in 2007. The most common treatment for early stage prostate cancer is a surgical procedure called Radical Prostatectomy. Radical Prostatectomy is where the surgeon takes out the prostate and some surrounding tissue in an effort to remove the cancer entirely and prevent it from spreading.

Radical prostatectomy "is a very, very difficult, complex operation” according to Andrew Vickers of Memorial Sloan-Kettering Cancer Center. Vickers is a researcher and a co-author of a study “that documented the learning curve doctors face as they perform operations over and over.” The study, which tracked the outcome of 7,765 radical prostatectomy patients, found a statistically significant association between surgical experience and the probability of patients being cancer free after five years.

The study found that surgeons who had performed 250 Radical Prostatectomies over their career had the best outcomes, i.e., patients without a recurrence after five years, when compared to surgeons that had performed fewer than 250 such procedures. After 250 cases, the improvement in surgical outcome did not improve regardless of how many more times a surgeon did the procedure. What’s unusual about this study is that it is one of the first such studies in cancer to clearly link surgical experience to patient outcomes.

As reported in the study, men whose doctors had performed the surgery only 10 times in their careers were about 70 percent more likely to suffer a recurrence of prostate cancer within five years than men whose surgeons had performed it 250 times.

In an interview associated with the release of the study findings in the Journal of the National Cancer Institute, Vickers addressed a cautionary note to prostate cancer patients considering Radical Prostatectomy. According to Vickers, "a very large proportion of the physicians doing these procedures essentially will never get up the learning curve because…they do not specialize in it and only do the operation only a few times a year.”

Take Aways of this Posting

- If a Radical Prostatectomy is in your future, ask your referring physician for the names of several surgeons. Call each of the surgeons and ask them, or more likely their office staff, how many of the surgical procedures the doctor has performed over the course of his/her career to date. Remember...the goal is to find a surgeon that has performed 250 or more Radical Prostatectomies.

- If you can’t find a local surgeon with enough experience, look for a National Cancer Institute (NCI) designated Comprehensive Cancer Program in your State. Contact the program and ask for the names of surgeons that specialize in Urology and find one that has done at 250 or more Radical Prostatectomies.

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Best US Cancer Hospitals - 2007

Perhaps the most important decision a cancer patient has to make is where to find the right doctors and hospital to diagnose and treat your condition. So how do you go about finding the best?

One good way to start is be going to the US News and World Report website. There you will find coverage of the 2007 America’s Best Hospitals, including the top US Cancer Hospitals. Keep in mind that you will usually find the best doctors affiliated with the best hospitals.

US News and World Report has been putting this “best of hospitals” list together for a number of years now and does an excellent job. Their researchers look at the same issues we all should be considering when it comes to finding the a doctor or hospital for a serious medical condition such as cancer:

- How many cases a hospital treats each year
- The mortality rate (number of people that died) for patients treated at the hospital
- The availability of key diagnostic technology
- What referring physicians thinks about the hospital

Whether newly a newly diagnosed cancer patient or someone seeking a second opinion, it is important to know that not all cancer doctors or hospitals are the same, advertising aside. Studies show that hospitals (and doctors) that treat more of a particular condition tend to have better outcomes. These hospitals also tend to have more advanced diagnostic capabilities and more experienced technicians, which are critical not only in identifying new cancer patients but in following up existing cancer patients as well.

Take my wife’s experience with our local cancer facility. When I called to find out how many patients with Stage IIIb lung cancer their Radiation Therapy department treated a year, I learned that they treated 60 cases that were “sort of like” my wife’s condition. When I called MD Anderson, which is where she was eventually treated, we learned that they treated 400 cases exactly like my wife’s condition. Believe me…experience counts when you have got to get things right the first time!

Out of 5,462 US hospitals evaluated, only 173 met the researcher’s standards in one or more specialties. According to the US News and World Report article, “hospitals are ranked by specialty and not by specific procedures because the goal is to identify facilities that excel at treating a variety of demanding illnesses and procedures within a specialty.”

Below are the names of the top 10 US Cancer Hospitals, out a list of 50 hospitals that were include in the 2007 annual ranking.


#1 University of Texas M.D. Anderson Cancer Center, Houston, TX

#2 Memorial Sloan-Kettering Cancer Center, New York, NY
# 3 Johns Hopkins Hospital, Baltimore, MD

#4 Mayo Clinic, Rochester, MN

#5 Dana-Farber Cancer Institute, Boston, MA

#6 University of Washington Medical Center, Seattle, WA

# 7 University of Chicago Medical Center, Chicago, IL

#8 UCLA Medical Center, Los Angeles, CA

#9 Duke University Medical Center, Durham, NC

#10. Massachusetts General Hospital, Boston, MA


Take Aways from this post:

1) Do you homework when it comes to selecting a doctor and hospital for your treatment. Significant variations exist among different doctors across the US when it comes to how they diagnose and treat the same types of cancers. You want to find doctors and hospitals with the best outcomes for treating your kind of cancer. Ask lots of questions.


2) Check to see if there is a National Cancer Institute (NCI) designated Comprehensive Care Program near where you live. These facilities and their medical staff are recognized regional leaders in the diagnosis and treatment of cancer.

Even if you are treated locally, consider getting a second opinion on your diagnosis and recommended treatment from an NCI-designated cancer program near you.

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Ignore Conventional Wisdom About Aggressive Prostate CA Treatment And You May Live Longer

One of the most important lessons my wife and I have learned during her bout with lung cancer is to never trust anything that sounds like "conventional wisdom."

I’ll never forget it when a local thoracic surgeon quoted us the survival statistics for someone with Stage IIIb NSCLC. Referring to the studies as “conventional wisdom,” the doctor preceded to suggest that my wife wouldn’t be around much longer. The problem was that his version of “conventional wisdom” was based upon studies that we knew to be 20-30 years old and out of date relative to treatment advances. That was almost three years ago and my wife is healthy and cancer free, thank you very much.

Accepting conventional wisdom at face value can be dangerous, at least when it comes to your health. Take prostate cancer for example. According to the authors of a recent study of men with aggressive prostate cancer, most men diagnosed with aggressive prostate cancer are told that their disease is untreatable. The study authors attributed this to the“pessimism that abounds among many doctors, who believe that aggressive prostate cancers are beyond cure and should only be followed with watchful waiting.” In layman terms that means don’t do anything.

Amazingly the study which appeared in the March 2007 Journal of Urology found just the opposite. According to study which looked at 453 cases of localized aggressive prostate cancer, “surgical removal of the prostate (prostatectomy) or radiation treatment more than doubles life expectancy” (e.g., 14 years) compared to those receiving the a conservative approach (e.g., < 7 years).

What are the take always?

1). Question everything your doctor tells you. Do your own homework and get the facts.

2). If you don’t like what you hear from your doctor, get a second opinion.

3). Be highly skeptical of conventional wisdom especially when it applies to your health.

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Different Asian American Groups Face Different Cancer Risks

I live in California, and besides having a Filipino wife, I know lots of people of Asian descent, some born in the US and many born in their native land. That’s why an article today in the New York Times about cancer rates in Asian Americans caught my attention.

The study, which looked at five ethnic groups living in California: Chinese, Filipino, Vietnamese, Korean and Japanese, found that people in each ethnic group had very different levels of risks for different types of cancer.

Among Asian American women, Filipinos women had the highest rates of breast cancer, followed by Japanese and Korean American women. Vietnamese women had the highest rate of lung cancer followed by Chinese and Filipinos. Japanese women reported the highest colon cancer rates followed by Chinese and Vietnamese.

Among Asian American men, Filipino men had the highest rate of prostate cancer, followed by Japanese and Chinese males. Filipino American males also reported the highest rate of lung cancer, followed by Vietnamese and Korean males. Japanese males had the highest rate of colon cancer, followed by Korean and Chinese males.

Stomach cancer is a common cancer found in both women and men of Korean, Japanese and Vietnamese ancestry.

The take aways from this posting are:

1). Know your own ethnic, genetic and age/gender-related cancer risks. Do not expect your doctor to know or remember your risk or to screen you routinely for them.

2). None of us should ever assume that our physician is “on top of everything” when it comes to our health. According to the New York Times Article, “some cancers in developing countries are often caused by chronic infections with certain bacteria and viruses that are routinely treated or prevented in the United States.” As a result, physicians in the US may not think to screen for cancers caused by infectious agents.

For a full copy of the study go to http://caonline.amcancersoc.org/cgi/reprint/57/4/190

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Introduction

I have been looking for the opportunity to share my thoughts and experiences regarding cancer for sometime now. Looks like I finally have an audience! I am grateful to the good people at Healthline for this opportunity.

So what do I know about cancer?

Well for starters, I understand:

1. How hard it is to have someone you love told that they have cancer. How, in a few seconds, your life and that of a loved one can be changed forever by the words “you have cancer.” I also know that many people who have survived the journey are better people for it.
   


2. That how you respond to the diagnosis of cancer makes a big difference in the outcome. I have seen people get so depressed that they see no point in going on…and they succumb to their disease. I have seen others, faced with the very same situation, find the strength, courage and support to soldier on through the depression to fight and beat back their cancer.


3. Cancer does not have to be the death sentence that everyone thinks it is. People with even the most difficult types of cancer are living longer than ever before. Take my wife for example. She was diagnosed in November of 2003 with Stage IV Non Small Cell Lung Cancer and today is in complete remission. According to the statistics, she should not have survived much beyond three months following her diagnosis. But with the right doctors and the right treatment, people like my wife can and do beat cancer every day in this country.


4. That every newly diagnosed cancer patient should “run not walk” to get a second opinion. But don't settle for getting a second opinion from just anyone. Get a second opinion from an expert. That means finding a physician that specializes in your type of cancer. Experts are out there…you just need to know how to find them and hopefully I can help you find them.
   


5. How hard it is to navigate your way around the healthcare system to get what you need. Who are the best doctors? Which are the best hospitals? What should I ask my doctor? What about my health insurance? I hope to be able to guide you through these and a myriad of other perplexing questions based upon my years of experience working in hospital administration and patient advocate for my wife and others.

I hope my first posting here gives you a sense of who I am and how I believe I can help my readers. My experience with cancer has given me reason to be optimistic and hopeful and I want to share that with you.

To use a cliché from the TV show the X-files, the answers are out there. My job is to help you find them Let me know what you think.

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