Sunday, July 15, 2012

Is There Too Much Breast Cancer Awareness?

The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) is an authoritative source of information on cancer incidence and survival in the United States. SEER currently gathers and publishes information from population-based cancer registries covering approximately 28 percent of the US population.  The table below shows the SEER data for four of the most common type cancers as well as Neuroendocrine Tumors (NETs).  A caveat here: The four most common cancer statistics come from SEER data from 2004-2009.  The NETs data is from 2004 alone and was taken from an article by K.E. Oberg, one of the foremost NET cancer doctors in Europe.

Type of Cancer
Incidences per 100,000 people
Neuroendocrine Tumor (NETs)

From what is frequently in the media, one might think that breast cancer is the most common cancer. Yet prostate cancer has a 25% higher incidence rate!  It’s interesting to me that this more frequent cancer lacks the organized marketing effort of breast cancer.  Where are the blue ribbons????   Where are the races in Central Park?

The chart above shows that NETs have a much lower incidence rate than any of these common cancers.  That explains why one doesn’t see many doctors that know about or treat this cancer.  This is why NETs are considered a rare or “orphan” disease by the National Institutes of Health. 

According to the Centers for Disease Control, the largest cause of all deaths among women is heart disease – see table below: 

Cause of Death
Heart Disease
Chronic lower respiratory diseases
Source:  Centers for Disease Control – Data as of 2007

The largest cause of cancer deaths among females is from lung, not breast cancer.  A female in the US is 73% more likely to die from lung cancer than breast cancer.*  Breast cancer is the second most likely cause of death among women, followed by colon cancer.

I get tired of hearing about breast cancer all the time.  It gobbles up enormous amounts of time, resources and attention when we should be raising funds for heart disease, lung cancer and other diseases.

I will be taking a few weeks off from blogging and will post again after I get back from my trip to Vanderbilt for the GA68 PET scan.

* United States Cancer Statistics (USCS) 1999–2008 Cancer Incidence and Mortality Data

Sunday, July 8, 2012

How  We Do Harm - A Doctor Breaks Rank About Being Sick in America

This book was written by Dr. Otis Webb Brawley, Chief Medical and Scientific Officer of the American Cancer Society as well as a professor of hematology, oncology, medicine and epidemiology at Emory University in Atlanta.  Overall Dr. Brawley is an advocate for evidence based medicine, as I believe every doctor should be.

How We Do Harm is one of the better books I have read on how cancer is treated in the US.  It covers some of the issues with overtreatment, the relationship between doctors and pharmaceutical companies as well as how different people get treated depending on their financial situation and insurance coverage.  The book may overlap with The Emperor of All Maladies and Overdiagnosed.  Nonetheless, it will give the reader a needed dose of skepticism as well as an incentive to be your own advocate.  Caveat Emptor!

Some of his terminology is funny in a sad way including:

Wallet Biopsy:  An analysis of the patient’s financial durability.  This is particularly relevant for cancer patients dealing with the high costs of their treatment.

GOMER:  Get out of my emergency room .This one came out of a book named The House of God that refers to “a person who has lost – often through age-what goes into being a human being.  A GOMER could be demented residents of nursing homes whose bodies wouldn’t die”.  Another category of GOMER is:

“LOL in NAD:  Little old lady in no apparent distress.  This refers to an elderly woman, perhaps a widow, who comes into the emergency room probably needing some psychiatric help - or more, likely, some simple human companionship".

I’m including these terms because I find them amusing. They may also help give the reader a flavor of the cynicism and humanity involved in being a doctor. 

A decent portion of the book is spent on pharmaceutical companies and their inherent conflicts of interests with doctors.  Specific examples are Procrit (Johnson & Johnson) and Aramesp (Amgen) that were used to build up hemoglobin in patients undergoing or subsequent to chemotherapy.  Procrit was approved by the FDA in 1993 based on a very small study of only131 patients.  It was introduced first and featured television advertising to patients talking about getting their strength back after chemotherapy.  This culminated with a Super Bowl ad in 2003
Amgen responded with a competing drug (Aramesp) in the early 2000’s and struck a deal with oncology practices to buy the drug in bulk, offering rebates of up to 20% of the cost, depending on prescription volume.  By 2006, sales of the drug were $4.85 billion in the US.   Two larger randomized studies showed the placebo group lived longer than those being treated with these drugs!  The second trial was stopped due to this fact.   After 13 years on the market, the evidence showed that patients on these drugs had higher incidences of heart attack and stroke. The two drugs also caused “tumor promotion”, meaning they caused tumors to grow.  The FDA put severe restrictions on the use of both Aramesp and Procrit in 2010, but not before making many oncologists rich.

Another FDA approval was for a combination of Gemzar and Tarceva for use in pancreatic cancer because it increased median survival by a grand total of fourteen days!

This anecdote hit close to home for me: It is about doctors stricken with post traumatic stress disorder (PTSD) from treating so many patients who will die.  “Many of my colleagues have learned to ward off PTSD by becoming assholes”.

Another case depicted a patient who demanded treatment despite protocols against it.  The patient had 3 doctors, including Dr. Brawley, advise against chemotherapy.  The primary doctor treating the patient said “People like that get what they want.  If I hadn’t done it, someone else would have”.

At the other extreme is the family who wants to keep the patient alive when there is no hope for a cure or any quality of life.  The author touches on this and denotes statistics that seem to be all over the news these days such as:  “24% of Medicare spending and 15% of all health spending is in the last year of a patient’s life”.  This is unsustainable, causes unnecessary suffering and keeps others from getting decent healthcare. 

This was a very readable, enlightening yet disturbing book. I would highly recommend it to anyone with cancer or a chronic disease. 

Sunday, July 1, 2012

Affordable Care Act and Cancer

On Thursday, the Supreme Court upheld the Affordable Care Act (ACA) by a 5-4 vote.  Surprisingly, John Roberts sided with the four liberal justices to make the majority.  Everyone was expecting that if it passed, Anthony Kennedy would have been the swing vote.  In today’s New York Times, Tom Friedman states about John Roberts “It’s the feeling that it has been so long since a national leader ‘surprised’ us...I think it was inspired by a simple noble leadership impulse at a critical juncture in our history – to preserve the legitimacy and integrity of the Supreme Court as being above politics” This post is not meant to be political – it is about the healthcare system and how it works when you have cancer or any other pre-existing condition.

Brian McFadden - The New York Times

Currently, my health insurance is mostly paid for by my employer. I contribute a portion to the cost through payroll deductions, insurance company deductibles and out of pocket expenses.  Since I am asymptomatic, I have told no one in my department that I have cancer and don’t intend to unless I need to take time off for sick leave.  My company’s benefits department must know that I have cancer since it shows up in the company’s insurance costs.  If my company downsizes and I am terminated, I could receive COBRA for 18 months. But due to the cancer diagnosis - a pre-existing condition, I am virtually uninsurable.  I am ineligible for Medicare for another 12 years (age 65) and I am not poor enough for Medicaid.  The Affordable Care Act (ACA) will allow me to get medical coverage should I be jobless and not out on disability.  This is a huge benefit and relief to me as a cancer survivor.  My cancer costs have been running about $70,000 annually and I am only taking monthly shots of Sandostatin and getting semi-annual scans – no surgery, chemotherapy or other treatments for the disease at this point.  I have no idea how much it will cost for me to get into one of the pre-existing condition insurance pools but I have to believe it will be substantially less than the $70,000 per year my insurance company is currently paying for my treatment.

There is another issue that is a concern to me as an employed cancer survivor and unrelated to the ACA: What might I need to do if I wanted to change jobs?  Suppose I interview for a new job and they want to do a pre-employment physical?  I know the new company will not hire me if they know I have cancer. Is it appropriate to handle it with something similar to “don’t ask, don’t tell”?  Should I not mention the cancer drugs I am taking if asked? This worries me as I am not sure if the new employer would know I have cancer before I got hired. But not disclosing my situation and then signing up for their health insurance could get me fired.  If I am in one of the pre-existing condition insurance pools that are part of the ACA, do I still have to worry about this?  These are things I think about as Wall Street continues to downsize and consolidate or if a better job prospect comes up.  Having a pre-existing condition is a big problem from an insurance and employment perspective. I am hoping the ACA will help me if I ever need insurance if I am unemployed or retired before age 65.