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~ Musings on health, illness & evidence based medicine

@justOncology

Tag Archives: recovery

Cancer Survivorship

18 Wednesday Jan 2012

Posted by @JustOncology in Uncategorized

≈ 4 Comments

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12 steps, cancer, digital media, epatients, evidence based medicine, health, innovation, medical education, medicine, oncology, recovery, twitter, wellness

By Richard Just, MD

The fact that the term “Cancer Survivorship” is now part of our vocabulary is a testimony to advances made in management of these diseases.  Most cancer survivors, however, are not unscathed by the experience.  As I tell my patients, they won’t be entirely as they were before treatment.  How these issues are dealt with varies from person to person.  But, awareness that chronic problems may persist long after treatments end signals that even though we’ve won the battle, the war is not necessarily over.  We may need to address problems in the physical, mental/emotional and/or spiritual spheres.  After all, quality is as important as quantity.

Certainly, health care professionals are well trained to deal with physical issues.  Attempting to address the totality of needs in an organized manner is a recent phenomenon.  Certainly, in thinking about programs that have been successful in supporting people mentally, emotionally and spiritually, 12-Step Programs come to mind.  The Steps are compelling as they are for anyone affected by the disease alcoholism, including the alcoholic (A.A.) and the “caregiver” (Al-Anon).  Substitute “cancer” for “alcoholism.”  The value of The Steps is that they provide a guideline through the process of recovery.  In fact, I prefer the designation “recovery” over “survivorship” as it implies an ongoing process with relapses and remissions along the way.

At first glance, the verbiage doesn’t seem to be appropriate.  But, The Steps suggest four primary ideas:

  • “We Are Powerless Over the Problem of Alcoholism.”  This notion of powerlessness is difficult for healthcare professionals, especially physicians, to accept.  The intention is that we as individuals have no ability to change attitudes and behaviors of others, but we do have control over ourselves.  Think the Serenity Prayer:

God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And the wisdom to know the difference.

In fact, this is a very empowering concept that releases each of us from worrying about issues that don’t concern us and address our energies to our own lives.

  • “We Can Turn Our Lives Over to a Power Greater than Ourselves.”  Many find the idea of a Higher Power difficult to embrace, while others already believe in a Power greater than themselves, but feel that “God has deserted” them.  Both viewpoints hinder recovery as they tend to foster a victim mentality.  Personally, I dislike the designation “cancer victim” for this reason.

The slogan:  “Let Go and Let God” can also be very liberating, recognizing that The Higher Power is in charge of our lives and we are not victims.  The 11th Step provides details:

Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His will for us and the power to carry that out.

  • “We Need to Change Both Our Attitude and Our Actions.”  Both the cancer and its treatments can  result in distorted thinking.  Some are left with severe fatigue and pain; others with long-lasting memory deficits called chemobrain.  Anxiety and depression are not uncommon.  The possibility of recurrence is always present.  Some become angry and blame their situation on others.  Obviously, these behaviors can be self-destructive and ruin relationships.  In these difficult situations, a useful tool in 12-Step programs is sponsorship.  Having someone who has lived through similar circumstances and recovered always there for support and guidance is crucial for recovery.
  • “We Keep the Gifts We’ve Received by Sharing Them with Others.”  Probably the most important concept.  Several studies have shown that participation in cancer support groups improves outcomes.  But many patients still are reticent to join.  Some prefer the privacy of one-on-one sessions with a therapist.  On the other hand, they lose the personal experiences of people who have experienced what they’re experiencing.  One compromise is to have a mentor or sponsor who has personal knowledge of the treatment guide the patient and family through the process.

For this reason, 12-Step programs rigidly subscribe to anonymity to encourage participation in meetings and sharing experiences with others.  The most important item in the success of these programs has not been identified, but several reports have suggested sharing at meetings as the major one.

I’m thrilled that we’re talking about Cancer Survivorship these days.  The fact that more people are living longer is very gratifying.  Therefore, formally addressing quality of life issues is the logical next step.  Incorporating 12-Step program concepts into Cancer Survivorship Programs, proven successful in other diseases, merits serious consideration.

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The ‘incident’

My life was essentially on autopilot. My oncology practice was very successful; in fact, too successful. All my time and energy was devoted to keeping pace with the increasing demands of the profession. Other pursuits, be they personal or professional, always seemed to take a back seat. My main unfulfilled passion was writing.

On January 7, 2011, everything changed. I had a new bovine aortic valve and three new coronary artery grafts. A life altering event, to say the least. Fortunately my recovery has been uneventful, and I had no evidence of muscle injury. So I’m extremely grateful for the pre-emptive surgery, and since I’m back to work on a part time basis, I now can devote some of my attention to writing.

For the past several years, a colleague, trusted advisor and friend of mine, Gregg Masters, had been prodding me to “just do it”, i.e., just start blogging, podcasting and life streaming my experiences in Medicine. He pointed out the value of my 36 years in clinical practice of hematology and medical oncology as 'elder wisdom' currency in relative short supply. In truth, there is certainly a lot to write about as the clinical knowledge base has grown enormously, to the point where management of all this information requires computers. Fortunately, technology has developed at a rapid rate also so that we can not only mine all this data to obtain meaningful information, but better disseminate it to each other, health plans (including government) and especially our patients. With the advent of social media including Twitter, Facebook and You Tube, this flow of information becomes a two way street allowing physicians to listen as well as talk. On a personal note, my wife published daily status updates during my surgery and through the post-operative period on a website called Caringbridge. She posted pictures as well as narrative. Colleagues, relatives, friends and patients had a window opened to them as to how I was doing, and they in turn wrote back notes of encouragement that touched me deeply.

When Gregg and I thought about it, his background not only in 'web 2.0' (social media) but perhaps more significantly his considerable experience in the business aspects of medicine brings value into the conversation as well. In today’s environment, physicians are constantly reminded that we not only are responsible for all aspects of caring for patients, but we are running a business as well. Years ago, I remember reading an excellent book called “The E-Myth Physician” by Michael Gerber. One of the chapters was devoted to the subject of “Money”. So Gregg’s knowledge complements my clinical background resulting in the birth of JustOncology.com.

Certainly there is no shortage of topics to discuss. Utilizing a variety of media: blogging (which addresses my passion for writing), audio and visual interviews with as many of the stakeholders in cancer care as possible, we hope to provide a forum for discussion of problems facing us. From these interactions, the desired outcome is to identify solutions that can only come from a collaborative effort.

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About

JustOncology.com is a joint publication of Richard Just, MD, aka @chemosabe1 on Twitter and Gregg Masters, MPH, aka @2healthguru on Twitter.

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