Waiting..

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...

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":

1. 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".
   
   
2. 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.
   
   
3. I suggest a simple model to help decision making in the companion website - click on the ADJUVANT DECISIONS tab in that section.
   

Guilt!

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

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

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

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?

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