Just reported is a Memorial Sloan Kettering Cancer Center and Cornell University study showing but 5% of terminally ill cancer patients understand the gravity of their disease and prognosis. Moreover, only 23 percent of these had a discussion about life expectancy with their doctor.
At first pass, I questioned the validity of the percentages. They were so low they bordered on unbelievable. This had to be mainstream press sensationalism at work! Then I spoke with an expert, and she convinced me I was not a typical lung cancer patient. The fact that I read about my disease after diagnosis was a big tell. Many do not.
My education about lung cancer started the first night of my diagnostic hospital stay. The lesson delivered ⎯ a very pragmatic and frank discussion with my general practitioner. His words characterizing my prognosis were "slim odds." He didn't want me to give up but wanted to ensure I knew the enemy.
After discharge from my diagnosis hospital admission, I burned up the Google Search Engine reading everything I could about lung cancer. In 2004 there were not a lot of sources, but there were enough to scare the living daylights out of me. Research revealed a very low probability of living 5 years even with effective treatment. My bravery evaporated.
My wife recalls that time. She reminded that my inquisitive nature departed with bravery. Martha asked questions. These explored diagnosis, treatment possibilities, and prognosis. I mostly stared at the clock in the consultation room. Or tried to change the subject.
My oncologist was frank. He said even with successful surgery, I had high odds of reoccurrence. When tumors appeared after pneumonectomy, he was down to chemotherapy to combat my lung cancer. Chemotherapy would buy time but it wouldn’t eradicate. Time purchased allowed for CyberKnife technology to emerge that was a surer kill. But treatment opportunities were explored because Martha was persistent. After a year of surgical mayhem and two years of Taxol Carboplatin hardened with Tarceva, I was barely along for the ride.
Sure, I knew my prognosis and life expectancy probability but knowledge did not empower me; it empowered Martha. So maybe the study numbers are low because patients understand their dire straits. Maybe we know and are afraid to talk about it.
In case you are wondering, lung cancer is deadly. Mostly because it displays few symptoms and is often diagnosed at late stage. The treatment tool kit for late stage lung cancer is largely empty. Why? Now that is a good question; one deserving of academic study. I’ll start.
Let’s hypothesize that lung cancer is a self-induced disease ⎯ people give it to themselves. If this is true, why should society invest in new diagnostic or curative means? As a logical extension of the hypothesis, society should never invest in curing maladies that are self-induced. How is taxpayer funded research for HIV/AIDS by the National Institute of Health to the tune of $3 billion a year explained? It is self-induced. Some will assert that a proportion of HIV/AIDS patients get the affliction accidentally. Yes, and some proportion of lung cancer patients are never smokers. But, drug abuse is completely self-induced and it garners just over $1 billion in yearly research. In the same data year, lung cancer was allocated but $225 million. No research for self-induced hypothesis fails.
Let’s construct another hypothesis: society funds diagnostic and curative research for diseases that kill the most people. Seems reasonable. Scarce resources ought to flow to afflictions that take the most lives. Let’s examine the data. In 2012, HIV/AIDS claimed 12,963 deaths according to the Center for Disease Control (CDC). In that same year, lung cancer killed 157,425!
Drug abuse is now anointed our national pandemic. Indeed prescription opioid overdose is “raging through the country.” CDC drug overdose deaths amounted to 38,538 in 2014 but in that year lung cancer deaths were 158,080. Lung cancer is our pandemic. It has been for a long time. The more-deaths-the-more-funding hypothesis is toast!
Frankly, I’m getting tired of the medical research community squandering precious dollars studying what cancer patients think, feel, or understand. What is far more relevant is how to find, fix, and finish lung cancer.
Stay the course.
Now, long after the commotion of active treatment, my wife and I often share recollections. Martha is my caregiver and for more than 3 years of near constant therapy she held the long thin line. In doing so, she had to confront my anxiety, discomfort and fear. These were variable; the constant foe was my general irascibility towards medical treatment. Now a 12-year survivor, we both laugh at some of my antics. But during treatment, there was high drama to deal with.
It is not easy to watch someone you love encumbered by all manner of tubes and wires in intensive care. Nor is it pleasant to attend to the full-throttle roar of chemo-induced side effects. Moreover, there is recognition that the side effect bedlam will occur with the same progression and intensity a short time in the future. Add to that the burden of failed treatments and the inability to influence outcomes. These are the plight of the caregiver.
While in the throes of treatment, most appreciated were the little things Martha did for me. Discharged from hospital with a chest tube in my lower back, scratching my back was a godsend. I was beset with “taxol toes” and rubbing my feet with Aspercreme provided immense temporary relief. But most appreciated was her homemade chocolate mint chip ice cream. This was an effective counter to a waning appetite, enormous attitude boost, and a relished wonderful concoction.
There is a fundamental reality about treatment recollection: the patient and caregiver have vastly different memories of the same event. I find it useful to accept Martha’s version as a higher order truth for two reasons. She was an observer and not under duress, and I was normally at wits end totally undone by the experience.
This difference in perspective points to the essential role of the lung cancer caregiver—a steady hand in a sea of turmoil.
Stay the course.
MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
Step 1 – Invest in sophisticated diagnosics before diagnosis
If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
Step 2 – Choose a good general practitioner
Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
Step 3 – Ensure your oncologist is a physician
A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
Step 4 – Learn about your disease
At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
Step 5 – Acquire a sanguine attitude quickly
Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
Step 6 – Any port in a storm
There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
Step 7 – Don’t believe the miracle cure
The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
Step 8 – Don’t try to tough it out
I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
Step 9 – Become a calendar maniac
If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
Step 10 – Choose to live
When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
Stay the course.
