September 11th

Today is the 11^th anniversary of September 11, 2001.  It was a beautiful Tuesday morning, just like today.  On that day, I was flying from Newark to West Palm Beach, Florida on a business trip.  My flight departed at 7:30 am and was to land in West Palm around 10:30 am.  I was going to my company’s training center in Boca Raton to teach an investment class to the sales force.  Everything was proceeding like a normal business trip. I was excited because Serena Williams was in first class on my flight.  I was in coach, so I didn’t get to talk with her.  I’m a big tennis fan and the US Open had just ended Sunday.  Serena was probably flying home to Palm Beach.  At about 10:00, the flight attendants told us to put our seat backs and tray tables up for our landing in Jacksonville.  Everyone started asking why we were landing in Jacksonville instead of West Palm.  We were informed that there had been a terrorist attack at the World Trade Center.  That didn’t explain the unscheduled landing, but everyone stayed quiet after the announcement. 

When we landed, the airport looked like an aircraft parking lot.  Many planes had already landed there and the airport was shut down.  The pilot must have radioed ahead to get Serena whisked out of the airport because I was only sitting 3 rows behind her and did not see her after I deplaned.  Meanwhile, the airport was a zoo, with many people wandering around.  All the rental cars were gone.  I then heard about the planes crashing in to the World Trade Center.  I could not reach anyone in New York City by phone, I had no idea how to get either to West Palm Beach or back home – I was stuck in Jacksonville!  I called relatives in Massachusetts because they were the only ones I could get through to – the phone lines in New York were overloaded.  I told them to try to get in touch with my husband because he did not know where I was.

I ended up on a bus from Jacksonville to Boca Raton and arrived at 7:00 pm.  I managed to find some of my colleagues at the hotel and borrowed a car so I could get toiletries and some clothes.  It felt good to be somewhere that I at least knew someone.  After hearing more about what happened, I realized that United Airlines flight 93 took off about 10 minutes after mine on the same runway that morning.  That gave me a shiver….

Even our hotel in Boca Raton was crazy – by the next day the FBI was all over the place because they thought the terrorist pilots had taken flight lessons in this part of Florida so they were at our hotel looking into things.  Weird!

On Thursday afternoon, three colleagues from the New York City area and I took off in a van to drive back to New York.  We took turns driving for about 5 hours each and got into Northern NJ early Friday morning.  The bridges and tunnels into New York were still closed, so the 2 of us that lived in New York City took the train into the city.  The city was like a police state when I got there.  I live about 3 miles from where the World Trade Center stood and the burning smell was really strong in my neighborhood for about 3 months after that.  It was surreal.  I was just happy to be home, alive and well.  There were pictures in front of the hospitals of the people who were missing – it all seemed so sad. 

My husband, Owen, worked for the Port Authority of New York and New Jersey for over 20 years.  He worked on the 55^th floor of the World Trade Center.  He had taken an early retirement package in 1996 – thank goodness or he would have been in the building!  He was there when the first bomb went off in 1993.  He knew some of the people who died in the 2001 attack; I did not.

Now, 11 years later, the time has dulled some of the shock and pain that was the character of New York City at that time.  I was out with friends last Friday night and when we finished dinner we saw the beam of light that shines well into the night sky down at the World Trade Center site for the week or so around September 11^th.   The light is visible from most places in Manhattan, the other boroughs and New Jersey. 

Despite the beautiful weather, this is a sobering day in New York as we remember that fearful time and all the lives lost on 9/11/2001.  I remember that day clearly as most people do and am happy that my plane landed safely.

Gratitude

My mother died when I was 35.  She was 63 and died of a heart attack on her way to work.  She probably did not know what hit her – it all happened so fast.  At that point in my life, I had just started a new job and I had not really experienced the death of anyone up close and personally.  I had lost my grandfather the year before but he was in a nursing home and was 93 years old.  Not only was my mother’s death sudden, she was unprepared to die; she had not yet filed her taxes. We had no idea what her thoughts and wishes were and her “affairs” were a mess.  Thankfully, she had a will and the estate was not too complex.  I was named the executrix. She was divorced many years earlier, I lived reasonably close to her and I worked in financial services so she must have thought I could handle it.  In hindsight, being the executrix may have helped me deal with the sorrow and pain of her death.

My mom was very smart, and quite funny. She was also an optimist who did not have regrets and didn’t dwell on things.  I like to think I that these personality traits are some of the better ones I inherited from her.

When you experience the death of a parent, especially at a fairly young age, you begin to realize that you are next in line and that life is short.  I realized it is important to enjoy every day. You never know when your time is up.

One of my favorite writers is Anna Quindlen.  She also lost her mother at a young age and it colors a lot of her writing.  Thank goodness I had been a long time reader of her opinion column in the New York Times at the time of my mother’s death.  Some of her thoughts on life are below:

Anna Quindlen, the bestselling novelist and columnist, reflects on what it takes to “get a life”—to live deeply every day and from your own unique self, rather than merely to exist through your days. “Knowledge of our own mortality is the greatest gift God ever gives us,” I've been living with mortality for decades, since my mother died of ovarian cancer when she was forty and I was nineteen.  And this is what I learned from that experience: The knowledge of our own mortality is that greatest gift God ever gives us.

It is so easy to waste our lives:  our days, our hours, our minutes.  It is so easy to take for granted the pale new growth on an evergreen, the sheen of the limestone on Fifth Avenue, the color of our kids' eyes, the way the melody in a symphony rises and falls and disappears and rises again.  It is so easy to exist instead of live.

“But you are the only person alive who has sole custody of your life. Your particular life. Your entire life. Not just your life at a desk, or your life on the bus, or in the car, or at the computer. Not just the life of your mind, but the life of your heart. Not just your bank account, but your soul.

 “Care so deeply about its goodness that you want to spread it around.  Take the money that you would have spent on beers in a bar and give it to charity.  Work in a soup kitchen.  Tutor a seventh-grader.”

“All of us want to do well.  But if we do not do good, too, then doing well will never be enough.”

“Life is short.  Remember that, too.”

“I've always known this.  Or almost always” 

These lessons were also my mother’s lessons. Her mother died young from cancer so she knew about the value of life as well.  Anna Quindlen puts those thoughts into words in a very special way. 

 Having cancer is a wake up call for most people.  Some people use the diagnosis to live better lives and others don’t.  My wake up call was when my mother died; the cancer diagnosis was not quite as big a deal.  My first vacation after my diagnosis was a trip to Northern Finland because I wanted to see the Aurora Borealis (Northern Lights) before I died.  We went to a small town called Nellim and saw the Aurora in all its glory on two different nights; we also went dog sledding which was not on my “bucket list” but was a lot of fun.  

In October, I will be going on a vacation to Yosemite.  I love being outdoors and in my opinion, the national parks are a small slice of heaven.  I also like it when I have the vacation already booked because then I can look forward to the time off. 

Life is so busy. Sometimes I feel like I am playing beat the clock!  As I rush through my frenzied life, I always take time off to enjoy the things I really love – family, friends and vacations.  I will always take the time to see a friend for lunch, even if I am having a busy day at work.  I always use my vacation time because in my opinion, that is why we work.  My motto is to be grateful for life.  Consider the alternative.

Big Med

This week’s New Yorker magazine has an article titled “Big Med” by Dr. Atul Gawande.  (There is a link to the article under Interesting Articles/Information to the right).  It is about how restaurant chains combine quality, cost control and innovation.  His question is “Can health care do the same?”  Dr. Gawande is a surgeon at Brigham & Women’s Hospital in Boston and he has written several books about healthcare quality and cost control. 

Big Med talks about how restaurant chains, specifically the Cheesecake Factory have been able to deliver high quality meals at a reasonable cost across the country to more than 80 million people per year.  On the surface, it seems ridiculous to compare the US hospital system to the Cheesecake Factory but after reading this article, one might not think it is so far-fetched. 

Dr. Gawande says “in medicine too, we are trying to deliver a range of services to millions of people at a reasonable cost with a consistent level of quality.  Unlike, the Cheesecake Factory, we haven’t figured out how.  Our costs are soaring, the service is typically mediocre, and the quality is unreliable.  Every clinician has his or her own way of doing things, and the rates of failure and complication (not to mention the costs) for a given service routinely vary by a factor of two or three, even within the same hospital.”

 He writes about how medicine in the US is changing; most physicians used to be self-employed but now only about 25% are. The rest are employees of large health systems.  He says “Historically, doctors have been paid for services, not results…we’ve generally been paid for what we do, whatever happens”.  Now most health insurers are linking cost reduction and quality improvement targets to financial goals:  “They want to create Cheesecake Factories for healthcare”.

This article devotes a lot of words to the business side of healthcare.  I found this quite interesting because I have a business background, but others might find it long-winded.  Basically the theme is that by getting scale through consolidation of healthcare systems, procedures and costs, medical care can be standardized, leading to lower expenditures and better outcomes. 

Dr. Gawande also discusses how he selected the surgeon for his mother’s knee replacement surgery.  This was quite interesting and informative.

His view is that “We’ve let health-care systems provide us with the equivalent of greasy-spoon fare at four-star prices, and the results have been ruinous.  The Cheesecake Factory model represents our best prospect for change.  Some will see danger in this.  Many will see hope.  And that’s probably the way it should be.”

I am in the camp of seeing hope in this model.  I would prefer evidence- based treatments and standardized care with substantial oversight on treatment protocol.  Unfortunately, as I contemplate surgery, I am in the old model of non-standardized care, hoping not to be in the lower quartile of patient outcomes.

Two Year Anniversary

This month marks the second anniversary of my cancer diagnosis.  My disease was identified by accident in August 2010 during a pre-operative sonogram prior to a hysterectomy.  The sonogram radiologist thought I had lymphoma. From what I’ve heard from other patients, this occurrence is not unusual.  Both my ob/gyn and my primary care physician (PCP) called me to discuss these results and to refer me to a hematologist/oncologist specializing in lymphoma.  However, because it was August, neither of these doctors was available for an appointment. They were either on vacation or they had just returned and were handling emergencies with current patients. I was scared and freaked out.  Here I was with cancer with no one to see me.  Finally, my PCP managed to get me in to Dr. L who agreed to see me as his last appointment before leaving on a two week vacation.  Dr. L was very nice and helpful given how scared I was.  He examined me and stated that I had no signs of lymphoma.  He did some blood tests and scheduled me for a CT guided biopsy. Upon Dr. L’s return, I learned that the biopsy was positive for carcinoid.  He then ran the CgA and 5-HIAA (both were elevated) and I was diagnosed.  I was fortunate. This was a very quick process, given how long it sometimes takes other patients to get a carcinoid diagnosis.  This was a good outcome, despite the NY medical community acting like Parisians and taking the month of August off.

In hindsight, the carcinoid was a better diagnosis than most cancers because 2 years later, with 5 CT scans, a ⁶⁸-GA PET, and 19 Sandostatin LAR shots, I have had no progression or changes in my tumors.  If it had been some other cancer, I could have been dead by now. 

Nonetheless, since August 2010, I have been in what I would call the “cancer loop”. This means that I get scanned at least twice a year and then see the oncologist to find out if there has been tumor progression.  The best outcome that I can have is called progression free survival or PFS.  In between scans I get monthly shots of Sandostatin LAR which is anecdotally shown to slow tumor progression, although there have been no clinical studies to prove this outcome.  The Sandostatin has ended the only symptom I had, which was very occasional (once every 2-3 months) flushing, which never bothered me that much.  The monthly shots and the drug side effects cause me more angst than the flushing ever did.

Alternatives for my situation are surgery to remove the visible tumors or chemotherapy, which does not usually work that well for carcinoid patients.  I could go to Europe to get a radio-nuclear therapy called peptide receptor radionuclide therapy (PRRT). This is known to shrink tumors but not to cure the disease. Steve Jobs and many other Americans had/have PRRT in Europe to treat neuroendocrine tumors because it is not FDA approved in the US yet. 

Given that I continue to be progression free and feel no symptoms, I still question why:

A)     I am getting treated at all?

B)     I am taking Sandostatin when I have no symptoms and the drug has not been proven to slow tumor growth?

C)    I would need a major surgery as has been suggested by Dr. Liu and presumably, my current NY oncologist?

My doctors think my tumors have been there for many years. If they are not bothering me, why should I do something drastic that could make the treatment worse than the disease?  Perhaps if and when there is some symptom or progression I should then consider surgery?  I’ve heard that carcinoid tumors are found in about 1% of autopsies of people who died from something else so perhaps mine were just found early and I might never have a problem or symptom.  Is this just wishful thinking?

This week I am accompanying another carcinoid patient to a surgical consult. She is in a similar, though not identical, situation to mine and has been recommended for surgery. I am hoping to be a good listener and take notes for her. I also hope to learn about what is involved in this sort of surgery.  I want to be better informed as I go through this journey and consider my options.  I feel very lucky that I am meeting so many other people with this rare cancer through the online and local support groups as well as patient conferences.

⁶⁸GA PET Scan at Vanderbilt

On Monday, I had my appointment with Dr. Eric Liu, followed by my scheduled ⁶⁸GA PET scan.  This was my first scan other than a CT.  I was nervous about being injected with a radioactive tracer -- it just sounds a bit scary. 

Dr. Liu was very articulate and professional and spent a lot of time with me.  I was very impressed with my experience at Vanderbilt-Ingram Cancer Center.  Dr. Liu talked about my experience to date to gather some history.  He said the ⁶⁸GA PET scan would answer two questions:

1)     Do I have appropriate receptors for the scan to work?

2)     What is the extent and location of my disease?

The doctor said I was the last of the 50 patients that were in this clinical trial.  He also mentioned, as has been debated in the on-line support groups, that he would appreciate it if I made a $2,000 contribution to Vanderbilt. The money would allow him to continue this important work to secure FDA approval for this scan in the US.  This cost was explained to me up front before my appointment so there was no surprise here. 

Dr. Liu said the injection should not hurt or cause any side effects but an EKG was required before and after the scan.  He assured me the radioactive tracer has a very short half life and that I would be fine going through airport security the next day.  We also discussed my doctor experiences in NYC, some of which had been “suboptimal”, and how it might work if I were to use him to treat my disease since I live so far away.

The prep for the scan included the EKG and the ⁶⁸GA injection.  Then I drank the same large container of barium contrast that I have had for all my CT scans.  This process took about an hour.  The injection did not sting, burn or cause any adverse consequences.  The PET scanner is similar to a long CT scan machine. The drill is that you have to lie on your back with your arms above your head and not move for about 30 minutes.  The machine does not tell you to breathe in and out like the CT scanner does.  Some people have issues being put into the enclosed tunnel-like machine but I just kept my eyes closed and tried not to move.  Dr. Liu came into the room while the scan was going on – this surprised me as I had my eyes closed. He encouraged me to stay still and that I was doing a great job. It was a nice pep talk.

After the scan was over I went for the second EKG and then to lunch.

Later in the afternoon, we met again with Dr. Liu.  He said he did not have the report yet but that I was positive for the receptors and although I have extensive disease, there is no evidence of metastatic disease outside of the abdomen/pelvis.  With the help of a radiologist, Dr. Walker, we reviewed the scans. The CT scan was right beside the ⁶⁸GA scan on the computer screen.  It was quite amazing, though I had no idea what we were looking at.  The doctors said I had very low liver involvement with one definite liver metastasis to the right lobe and a possible metastasis to the left lobe.  There is multifocal small bowel disease.  That is where the primary tumor is located. 

Dr Liu said that he definitely thinks that this is resectible because all of the tumors are in the abdomen. Surgery, although it is not curative, would mean that I would most likely die of something else other than carcinoid cancer.  He described the surgery as major - probably 6 hours in the operating room with a 6-8 week recovery period.  He would want to perform other tests such as an endoscopic ultrasound and surgery diagnostic labroscopy prior to any major surgery.  The Doctor also wants to get some live tissue for pathology work. My original biopsy slides are exhausted/used up.  

The doctor believes surgery is the best way to tackle my specific disease and believes sandostatin is just patchwork, of little long term help without a surgery.  He also thinks that Peptide Receptor Radionuclide Therapy (PRRT) would not be necessary after a surgery because most of the disease would be gone and it would take a very long time to grow back.  He said the best places for PRRT are Sweden (where he studied) and Bad Berka in Germany.  He said the major side effects from PRRT are kidney damage and bone marrow suppression. 

This was a lot of information to process and I am very scared to undergo a large surgery like he describes.   Dr. Liu said that he really would like to do this surgery himself and I would need to stay in Nashville for 2-3 weeks if he were to do it.  He said that he is very comfortable with Dr. Sasan Roayaie at Mount Sinai in New York as well. Dr. Roayaie is a liver transplant surgeon but also does this type surgery. 

I need to do some thinking and reviewing my choices about treatment.  I will wait for all the written reports and meet with my doctors here in New York to get further information.  I thought Dr. Liu was the most helpful and articulate doctor I have seen so far to discuss this disease and I would highly recommend him. 

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
Prostate	154.8
Breast	124.3
Lung	62.6
Colon	46.3
Neuroendocrine Tumor (NETs)	5.3

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	Percent
Heart Disease	25.1%
Cancer	22.1%
Stroke	6.7%
Chronic lower respiratory diseases	5.5%
Alzheimers	4.2%

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

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.