navigating cancer options and decisions

Pain

2012-07-09T18:44:00.004-07:00

At a recent visit with a patient I was reminded about the pain we do not always recognize. Physical pain has its own pain scale and gradation from smiley, to sad face; but what about the other pain we do not always inquire about? The emotional pain when our bodies and futures are threatened and change. Amputation, stroke, creeping dementia, advanced cancer engender fear. Fear is a form of pain not assuaged by a painkiller.

Pain of loss of function, pain of spiritual abandonment and many variations on these themes all add to the burden of illness.

Disease that interferes with communication, and fluency of thought and speech can be isolating and dehumanizing. Inability to communicate this loss of communication adds to the fear, paranoia even and anger of this personal and social excommunication.

I was privileged to see some of his drawings. Sometimes listening takes a little more time. Sometimes understanding requires the use of all of our senses.

+ psychology... flow... mindfulness...

2011-08-13T14:21:00.001-07:00

What makes an individual happy? The roots of the psychology investigating what is right with ourselves rather than what is wrong probably starts with Maslow. His "triangle" reflects his theory of an hierarchy of needs and his book Personality and Motivation is a landmark in the field of motivation.

Relevance?

A patient forwarded a reference to an article in JAMA dealing with physician burnout and its negative effects on their satisfaction and patient relationships.

Reflecting on its findings raised a number of random thoughts . How do medical schools choose and train prospective doctors? How do doctors maintain their balance? How do patients with chronic illness deal with "disease and its management" burnout?

At a personal level my tools are provided by Maslow, Snyder, Victor Frankl, Mihaly Csikszentmihalyi, my family and my parents.

What attributes play into "survivorship" of both the provider and the recipient of health care? For the patient, survivor characteristics include resiliency, self actualization, strong social relationships, appropriate goal setting and willpower to quote some of the above. Charles Snyder was a positive psychologist who wrote "The Psychology of Hope" in which he discusses the better outcomes in "high hopeful" individuals.

Mindfullness I believe is part of a broader positive psychology theory of a Meaningful Life in which a positive sense of well-being, meaning, and purpose derives from contributing to the greater good of others.

In the JAMA article the surgeon indicates the positive experience immersion in an operation generates. He is experiencing what Mihaly Csikszentmihalyi has called Flow ... you may find this link to a 19 minute video interesting.

For the patient and their loved ones illness interrupts and threatens not only the daily activities of life, but at times life itself. Where to find the hope, motivation and will power?

I have left this blog incomplete and with a ? not an answer. More later?

DUU does not have to be duh?..

2011-08-11T07:11:00.001-07:00

Decision making under uncertainty [ DUU ] .. I am reading Sharon Mcgrayne's history of Bayes' rule and game theory works by Steven Brams .... both have application to my practice....

More to come as I develop this theme.

[ I define "duh" rather narrowly as expressing incomprehension. If interested in "duh" you can explore further here.]

You cannot live forever....

2011-08-10T16:49:00.000-07:00

What a busy week in the medical news: for chronic lymphatic leukemia patients a wonderfully scientific article using a virus [ neutered to prevent replication ] and further biological engineered, using gene transfer techniques, to create an expanding clone of immune competent cells to kill the leukemia cell. An iconic scientific study.

In contrast, this piece by a blogger in a recent The New York Times piece headlined "Trying to Live Forever", discussed observational medical studies and referenced a Consumer Reports Health article indicating the scientific weakness of observational studies. So far so good. He points out that the news media bombards their readers with "constant updates on the latest observational studies" which he considers counterproductive. I could not agree more.

The next element in his piece however gave me food for thought and a contrary view. Agreed we are all going to die and how is always an unknown event. Agreed that following common sense as regards nutrition, and avoidance of smoking is to our advantage, however dismissing gaining years by reducing risk of heart attack and the like because I may die ten years later of dementia does not resonate with my experience, logic nor philosophy.

The argument does not accommodate the wonderful quality of life that can be enjoyed in that ten years. An opportunity cost to say the least if I forgo my colonoscopy at 70 and as a consequence miss a colon polyp the removal of which has prevented a cancer growing and become incurable? Actuarial statistics/life tables indicates that at the age of 60 I can expect 20.92 years of life and a women 23.97 years! Dying of pneumococcal pneumonia because I did not have my vaccination at 70 for example would cheat me of

13.73 years.

How do I maximize quality of my remaining years to ensure that "gain" is pleasurable. Thats easy. Recognize the factors that are in your control and manage them. Start by reviewing the self help section of cancer-management.com.

The alternative is to be like Raymond in the movie Rain Man: paralysis by analysis.

What did those three patients with chronic lymphatic leukemia think?

What do you think?

Heroes and superheroes

2011-08-05T11:56:00.001-07:00

Its been a while.

Thumbing through "The Psychology of Superheroes" took me back to a thread that has run through the interactions I have had with patients over the 40+ years I have been in clinical practice. The authors, proponents of Positive Psychology, note the absence of heroes in contemporary life and suggest current journalism exposing our sports, political and other glitterati as having clay feet. The authors review the character strengths, socialization and happiness factors reflected in the representation of superhero life.

So what has this to do with my day? I meet heroes every day. They live among us. No

costumes or outwardly obvious superpowers of flight or fight. They have the internal powers that make them strong and resilient. They have rewarding family and social interactions - they are fact, not fiction. They have no secret identity.

They are people which disease has made patients. An acute event such as leukemia or cancer has ambushed them and their families and brought out the character strengths they may not have realized was in them. Strengths that are required for survival.

Strengths that accompany patients on their final journey with grace, dignity and a lesson for the rest of us. I remember and salute you.

Inflammatory stuff......

2010-12-03T15:20:00.000-08:00

Reviewing subject material for a talk to laypersons I am giving next month has added to my conviction that we can do more to help ourselves and rely less on the health care industry.

As you will see from my companion website I have a management "map" that incorporates the patient [ and family ] as strategic and executive partners in their own care.

The lifestyle component is the center of my talk and the subject for this post. Biologic evidence links inflammatory mediators, as one of many pathways, to cancer promotion and progression one cancerogenesis has been initiated. Inflammation is mediated by chemical messengers and cross-talk substances such as cytokines.

Some of this chemistry is pro-inflammatory; others anti-inflammatory. The question being what can we do to tip the balance to the healthy, "anti-cancer" direction? Our habits and environment can influence disease outcomes and quality of treatment.

1 Moderate exercise you enjoy.

2 Move to a "Mediterranean" diet.

3 Manage attitude and relationships - understand and use bio-behavioral skills.

4 Sleep and relax well by strengthening your coping skills.

How good...........?

2010-08-27T09:09:00.001-07:00

Rabbi Kushner has written a number of books I can recommend. The one I was recently reminded of was "How Good Do We Have To Be? Although ostensibly addressing guilt and forgiveness it is has served as a useful personal theme for me as a doctor as I ask myself if I am maintaining my "goodness".

I have a personal "quality model" I test and calibrate myself against:

A] Is my knowledge base as a physician up to date?

B] Is my interaction with the patient sitting in front of me focussed?

C] Am I communicating and adequately transferring information?

Maintaining knowledge currency is easy in our web-enabled world. Push technology sends daily e-mail summaries of medical journals I have subscribed to for content summaries. Data aggregators send daily disease orientated e mail summaries and links. Selecting articles of incremental, practical and clinical value, hospital medical librarians then send a .pdf full article back for review and filing in a data base for future reference. These are often useful patient education material.

Entering a room to meet with a patient is entering a vacuum with suspended time. I must be fresh, not interrupted and concentrating on the only patient I have - the one sitting in front of me! Not easy in the health care industry 2010 style: interruptions from cell phones, pagers, colleagues. The economics of re-imbursement that drives doctors to see more patients in less time, use "physician extenders" such as nurses, nurse practitioners and physician assistants. Less face time, less talk, less explanation, more potential for errors or missed cues that may help diagnosis or management. It takes discipline and office practice rules and efficiency.

The third rule follows the above creation of uninterrupted time. I use sketches to map out the information I believe the patient requires to participate in management decision making and understand the basis for my recommendations. I encourage family to be present and our discussions recorded. I publish my home e-mail address on my "business" card to encourage communication, questioning and dialogue.

Concentration, communication and clarity.

Alternative

2010-08-20T11:47:00.000-07:00

Alternative, complementary, holistic are some of the buzz words swirling around the internet world of cancer advertisements, chat rooms and the like.

I consider health to be the sole responsibility of "we the people". In a book titled "Medical Nemesis" , Ivan Illich challenged what he called the "medicalization of society" and challenged the individual to take responsibility for their health. His argument is somewhat polarized but has merit, particularly when we look at obesity, smoking, drugs, alcohol, marital and work stress and lack of exercise in a large section of the population.

A satisfying job paying a fair salary is the cornerstone of an individuals health. It supports a good education, clean air and water, a sound roof over your head and simple food on a clean table. These form the foundation of health. Appropriate prevention from vaccinations to tooth and gum hygiene pays off. Being happy in marriage and relationships adds to the health formula. Awareness of personal safety at home, work and on the road saves lives. Maintenance of ideal body weight with good nutrition and exercise, being tobacco and substance abuse free add years of quality life and increases savings.

Integrating and balancing all of these elements promotes the best "environmental" impact on whatever genetic or inherited disease promoting vulnerabilities we may have.

Illness either acute or chronic is optimally managed by using all the assets and opportunities available. Sometimes patients will require a dentist, doctor. Some illness is best managed by a surgeon, others may require medication. Illich died of cancer rejecting medical intervention - not knowing his details precludes comment. He would have approved of the New England Journal of Medicine article indicating the impact of palliative care.

Waiting..

2010-05-25T16:34:00.000-07:00

There is waiting and then there is waiting. Waiting for my patients as an oncologist does not fall into the group where waiting is an happy expectation. My patients wait with a spectrum of emotions, mostly negative. Anxiety, dread, fear are words I hear on a daily basis.

All of these emotions have a negative influence on the bodies biology. They cause stress and effect not only the patient, but also their support system, be it spouse, friend or family.

Waiting for the results of a test that will indicate cancer or a benign condition. Waiting for a report that will indicate response or failure to treatment. Life is suspended.

The solution is to minimize delay in arranging testing, maximize rapidity of response. This requires understanding of and sensitivity to waiting as a noxious element in the disease schema.

Creating "real time" communication between the medical team leader and subsequent feedback to the patient. Important scan in the morning? Verbal or e-mail communication between oncologist and responsible radiologist with feedback to the patient THAT day should be the norm. Not: waiting for the written report and expect a call from a nurse in a few days that becomes a week or two. That is a lifetime!

Special pathology will add a few days. Molecular analyses a week or two. But the "core" test outcome of cancer versus benign process should be known in a day or two.

Communicate!

Regret...

2010-04-30T08:36:00.000-07:00

As my patients and I discuss choices and review the medical and personal factors that drive decision making, lurking in the background is the "regret factor".

The definition I choose for this regret is based on decision theory. In this sense I define regret as the possible opportunity cost or loss resulting from a decision. That is the difference between the actual payoff of the path taken, versus what might have been gained if the alternative choice had been made. See the following link for more background: en.wikipedia.org/wiki/Regret.

The side effects and trade offs of cancer treatments [ as a negative ] are balanced against the [ possible positive ] future gains. I simplify this important dialogue with the following "regret matrix":

The lesson: make sure you have an honest conversation with your medical team. Ensure you understand both sides of the equation; both the advantages and the "cost".
Know that all the "forecasting and probability" data is based on the average for a group of people. Review the statistics module in my companion website .
I suggest a simple model to help decision making in the companion website - click on the ADJUVANT DECISIONS tab in that section.

Guilt!

2010-04-06T16:36:00.000-07:00

It has been a while. I have been occupied adding content to my web site and getting a feel for the "flow" of thought and information.

I was challenged today by meeting with a very close, and loving family of a elderly father and husband. The children wanted an opinion and travelled a distance from their home town with their father for that purpose. He has an advanced cancer diagnosed and managed by medical oncologists in, and near his hometown.

Now 82 he had been active until he developed dementia a few years ago. His wife of 64 years was present and relayed valuable information regarding his state of mind, present circumstance and comfort. He had heart disease, prior stroke, kidney failure but had NO complaints referable to his marrow cancer. He recognized with zest his family and knew the names of his children, and wife who accompanied him. He had neither pain nor any symptoms he could volunteer. He was in a wheelchair and was unable to give any significant account of himself apart from indicating he "was happy". He had outlived all his friends.

He had no living will or advanced directive and his intelligent and supportive family were his decision makers. His medical oncologist had recommended the placement surgically of a venous access [ port ] device and institution of chemotherapy.

We discussed his palliative options and they understood his condition was incurable. One daughter was a well informed, medically trained and experienced person. In the absence of symptoms, chance for cure and multiple competing disease they were educated about decision making principles, and had his facts applied to that thought process without emotional bias. They understood the consequences of chemotherapy and recognized the treatment side effects and regular office visits were a significant consideration.

He would not be capable of understanding the changes treatment would cause, nor did he have his own voice in this dialogue due to his dementia, and absent a advanced end of life directive.

The family felt collectively and individually guilty and had this, perhaps inadvertently, fueled by his doctor who proposed immediate active intervention and had not given a balanced discussion indicating support only as an option.

The discussion that evolved after my review of the patient, his condition and context allowed them to see their husband/father and not a diagnosis of myeloma. This resolution allowed them to harness their love and protective roles to focus on the quality of his remaining time. No guilt!

Sleep

2010-03-14T05:30:00.000-07:00

Sleep! As the clock changes with the season this is an opportune time to touch on a third of our lifetime. Pages of blog and blah are devoted to this subject. Sleep clinics, the drug industry are heavily invested.

At least half of my patients indicate a sleep issue as a material symptom. Research has shown a link between insomnia, depression and anxiety with measurable biological and chemical changes.

Under the hood - 2010

2010-02-22T16:30:00.000-08:00

Once upon a time cancer was considered a disease of cell proliferation. Chemotherapy was aimed at cellular cycle activity and its success has reached the limitations of this disease model.

New insights have led to new therapeutic directions and opportunities. Today the basic mechanisms causing cancer can be considered as alterations in a clone or "tribe" of primitive cells that develop changes supporting their survival or "immortality".

Understanding the cellular communications programs and signals that lead to cell death, known as apoptosis, has led to the understanding of how these intra-cellular pathways are altered in cancer cells.

This in turn has allowed the tailoring of biological agents targeted at one or more of these signal elements and pathways.

This personalized therapy is now applied in the day to day treatment of breast, lung, colon and Gastro-Intestinal Stromal Tumor as well as chronic myeloid leukemia. Cell signaling products are available as pharmacological products to support anemia, low white cells and platelets.

A New York Times article offered a glimpse into these endeavors, and more is to follow in the companion web site: cancer-management.com.

Navigating the cancer map

2010-02-16T17:46:00.000-08:00

I am constructing a companion website. This introduces a more structured approach to the educational instrument I use on a daily basis. I have been using this outline in one form or another for the last four decades and it is refined as evidence and knowledge has evolved.

This blog will deal with the "softer" side of my daily interaction with patients and their family. These interactions trigger a broad array of questions and challenges that may be of interest to a wider audience.

What can I do to help myself?

2010-01-13T16:13:00.001-08:00

A common theme I will spend more time with later in this curriculum. An overview would include:

1 Avoid harmful habits:

Toxic habits such as smoking, excess alcohol, lack of consistent, intelligent exercise, stress and malnutrition.

Not creating and following a "medical calendar" including dental, eye, and basic medical monitoring checks.

Not responding to any changes in your body that might be early warning signs of illness.

2 Build healthy habits:

Establish health goals embracing the above issues

Develop a comfortable and honest relationship with an healthcare provider you have rapport with

Do a yearly "SWOT" analysis [ strength, weakness, opportunities and threats ] - more about this later

Monday January 11.

2010-01-11T19:46:00.000-08:00

As I look back on todays intraction with patients, two basic questions emerge as "foundation" elements in constructing and educating about a management plan which I call a map.

1 What do I have and what is going to happen to me?
2 What can I do to help myself?

Over the next few weeks I will build a map and navigate through the options to illustrate the basic information needed to understand and deal with their cancer.

Each disease has unique elements as add-ons to this process and later I will be using video on U-TUBE or imbedded in this blog to illustrate. The patient ends our first meeting with a few pages in which are sketched out their disease facts and management plan covering:

1 What do I have?
2 Where is it?
3 What does this mean to my life?
4 What are my treatment options?
5 What can I do to help myself?

We will discuss each element as build a map for different cancer using my daily patient consultations as examples.

2010-01-10T14:40:00.000-08:00

It is the night before "day one" of this experience driven blog. By some count there are 10,000 plus health, medical blogs. I want to bring something practical to this offering for patients and anyone interested in navigating through encounters with the diagnosis of cancer. I am driven by daily encounters with people struggling to cope with a new diagnosis. Chaos, uncertainty, fear are natural responses when the orbit we live in is challenged by a life threatening disease.

Knowledge and the control that it brings is a gyroscope that allows the best pathway through a complicated map. I hope to bring a compass, and a "best fit" practice guide. I do this every working day.