Does a Prayer Each Day Keep Illness at Bay?

Research into the impact of religious and spiritual beliefs on our health continues.

By John Leifer

When we are sick, we rely on our physicians to heal us. And for good reason: they possess the knowledge, tools, drugs, and procedures to conquer many maladies. But not all illnesses respond to the ministrations of modern medicine, as many of us learn with the passage of time.

As we age, virtually all of us will be afflicted with one or more chronic diseases, some of which can be quite devastating. Cancer, once considered an acute disease, now often falls within this category. If good fortune prevails, medicine will control the progression of the disease. If not, we hope it will at least provide us with a modicum of comfort.

But medicine is not omnipotent, which is why, for some patients, healing is not the sole province of doctors. Those patients turn to their religious and spiritual beliefs in the hope that solace and, perhaps, healing will be found there. But do such beliefs—and the accompanying prayers, spiritual self-examination, and other practices—truly make a difference in the trajectory of our health?

If longevity and reduced mortality are the ultimate proxy for health, the jury may be out on that question. More than two dozen studies have revealed a correlation between how long we live and the degree to which we regularly attend religious services.1

According to researchers Doug Oman and Carl “One of the most thorough of these studies, an eight year follow-up of more than 20,000 adults representative of the US population, found a life expectancy gap of over seven years between persons never attending services and those attending more than once weekly.”1 The correlation between religious attendance and longevity is so strong that even the National Institutes of Health acknowledge it.2

But it is not just the length of our lives that may be affected by our spirituality or religious beliefs; it is also the quality of our lives. Researchers have found strong correlations between our beliefs and our ability to maintain hope, derive meaning and purpose, and maintain critically important relationships during times of great adversity.

It is important to note that our beliefs can also have an adverse effect on health, as was powerfully demonstrated in a study of HIV patients by Gail Ironson and colleagues. Ironson sought to determine the impact of both positive and negative views of God on the progression of this devastating disease.

Ironson’s results were tied to two clinical indicators of disease progression: CD4 cells (an important component of one’s immune system) and the viral load (the amount of active virus circulating in the patients’ bloodstreams). Ironson’s findings: “Those who viewed God as merciful/benevolent/forgiving had five times better preservation of CD4 cells than those who did not view God positively. Those who viewed God as harsh/judgmental/ punishing lost CD4 cells at more than twice the rate of those who did not view God negatively.”3

Such conclusions are powerful and provocative, yet many scientists remain skeptical about the relationship between religious beliefs/ spirituality and health. It’s not that they refute their colleagues’ findings, assuming that the research is methodologically sound; rather they raise important questions regarding the interpretation of those findings and the attribution of positive benefits to religion and spirituality.

Part of this skepticism comes from a well-founded distrust of the words religion and spirituality because there is no universally agreed upon definition of the terms. For some people these words communicate a profound and personal relationship with God, whereas for others they communicate a more agnostic outlook on life, where one’s sense of spirituality is derived from community. With such disparity it is understandably difficult to draw meaningful conclusions about the influence of religion and spirituality on health.

Beyond semantics looms another important issue: Are there discernible mechanisms at work, underlying religious and spiritual beliefs, that impact health outcomes? Oman and Thoresen offer four such mechanisms1 that may be responsible for improved health and well-being:

  • Health behaviors. Certain religious traditions foster the adoption of positive health habits while discouraging negative behaviors. When smoking, alcohol consumption, promiscuous sex, and other detrimental behaviors are shunned, adherents may benefit from such prohibitions.
  • Social support. There is vast evidence supporting the power of social connection in fostering health and well-being. Faith and religious organizations form the very heart of the social network for many people. Thus religion/spirituality brings social connectedness, which is essential to health.
  • Psychological states. Oman and Thoresen suggest that religious beliefs/spirituality may contribute to a heightened sense of emotional or psychological well-being—whether through elevated levels of positive affect, such as joy and hope, or reduced levels of negative emotional states, such as despair.
  • Psi influences. Psi in parapsychology refers to phenomena that cannot be explained using conventional rules of science. Mystical or transcendental experiences, synchronicity, and other phenomena fall into this category. Because we are unable to explain, measure, or replicate these phenomena, they remain largely outside the realm of scientific investigation.

So what should you take away from this research-oriented discussion?

Empirical research is important, but each of us will approach our health and well-being in a very personal way. Some of us will primarily turn inward, with our focus on how health issues change our sense of self and perhaps our direction in life. For others the journey will be more outwardly focused, emphasizing the importance of personal relationships in helping us cope with whatever health issues arise. Others will ultimately look upward, to God and their relationship with Him.

References

  1. Oman D, Thoresen CE. “Does religion cause health?”: Differing interpretations and diverse meanings. Journal of Health Psychology. 2002;7(4), 365-80.
  2. Hummer RA, Rogers RG, Nam CB, Ellison CG. Religious involvement and U.S. adult mortality. Demography. 1999;36(2):273-85.
  3. Ironson G, Stuetzle R, Ironson D, et al. View of God as benevolent and forgiving or punishing and judgmental predicts HIV disease progression. Journal of Behavioral Medicine. 2011;34(6):414-25. doi: 10.1007/s10865-011- 9314-z.
  4. Swinton J, Bain V, Ingram S, Heys SD. Moving inwards, moving outwards, moving upwards: The role of spirituality during the early stages of breast cancer. European Journal of Cancer Care. 2011;20(5):640-52. doi: 10.1111/j.1365-2354.2011.01260.x.

WHAT EVERY WOMAN SHOULD KNOW ABOUT PROSTATE CANCER

What Every Woman Should Know about Prostate Cancer

Become an empowered partner by learning about this common cancer type.

By John Leifer

If You Are Like Most American Women, chances are you serve as the key decision-maker when it comes to the health of your family— whether it’s selecting a physician, deciding on treatment options, or taking steps to prevent the onset of illness. It’s a role that carries with it the awesome responsibility for making effective, informed deci­sions that give your loved ones the best chance of a good outcome and enduring health. This is particularly true when confronting the issue of cancer. And the cancer that is most likely to strike the men in your fam­ily, as they age, is prostate cancer.

What Exactly Is the Prostate?

The prostate is a walnut-size gland located between the bladder and the penis. It surrounds the urethra, the tube that carries urine from the bladder to the penis. When it becomes enlarged, a common condition with age, the urethra is squeezed and urinary prob­lems can result. The prostate plays an important role in reproduction, being responsible for much of the seminal fluid produced by a man.

What Is Prostate Cancer?

When cellular growth goes awry in any organ, cancer is often the result. When this happens in the prostate, it is referred to as prostate cancer. Doc­tors refer to the most common type of prostate cancer as adenocarcinoma of the prostate, based on the partic­ular type of cancer cells that have developed.

How Common Is Prostate Cancer?

With the exception of skin cancer, prostate is the most common cancer occurring in men. According to the National Cancer Institute (NCI), there are close to 3 million men liv­ing with prostate cancer in the United States. An additional 180,000 new cases of prostate cancer will be iden­tified in 2016, and approximately 26,000 deaths will be associated with the disease.1

The good news is that most forms of prostate cancer are relatively indolent, or slow growing. As a result, the five-year survival rate following a diagnosis of prostate cancer is 98.9 percent. The NCI further states that while “an esti­mated 16 percent of men will be diagnosed with prostate cancer in their lifetime…only 3 percent will die of it.”1

Are There Clear Symptoms Associated with Prostate Cancer?

Prostate problems are relatively common in men over the age of 55, and these issues may be mis­taken for cancer in some cases. An enlarged prostate, known as benign prostate hyperplasia (BPH), can be particularly troublesome, causing problems with urination, sexual function, and other symptoms. And while problematic, BPH is far more of a nuisance than a serious threat to a man’s health.

Though prostate cancer can mimic the symptoms of BPH, it can also be present without the appear­ance of symptoms, particularly in its early stages. When prostate cancer becomes advanced, other symptoms may be present, includ­ing bone pain (frequently occurring in the lower back) and unexplained weight loss.

How Is Prostate Cancer Diagnosed?

Preliminary diagnosis generally relies on screening, which consists of a blood test, known as a PSA (prostate specific antigen), accom­panied by a digital rectal exam. Because the prostate is located directly in front of the rectum, a physician is able to palpate the gland with his or her finger to see if there are any obvious abnor­malities. Neither test is definitive, which means that suspected cases of cancer must be biopsied.

When a man’s PSA reaches a cer­tain threshold or there is perceived abnormality upon physical exam­ination, the physician may recom­mend a biopsy. It should be noted that some physicians also recom­mend biopsies based on the rate of change in PSA levels, referred to as PSA velocity. Recent research sug­gests, however, that PSA velocity, by itself, is not a reliable measure on which to recommend biopsies.2

When performing a biopsy, a surgeon—most frequently a urol­ogist—relies on ultrasound-guided imaging to insert needles into various sites on the prostate. The hollow needles extract tissue cores that can then be examined to determine the extent of the disease. Twelve samples are most commonly collected.

The cores are then examined by a pathologist, who rates them based on what is known as the Gleason score,3which ranges from 2 to 10; higher numbers signify a more seri­ous expression of the disease.

If more-advanced disease is sus­pected, additional imaging studies may be performed to determine if the cancer has metastasized, or spread to bones or other organs. Based on the sum of the evidence collected through these various tests, patients are assigned a stage that indicates the extent of the dis­ease. The earliest-stage cancers are described at Stage I; cancer that has spread to other portions of the body are Stage IV.

What Types of Treatment Are Recommended?

The stage of the tumor and one’s age at diagnosis may significantly guide treatment options. Because many forms of prostate cancer are slow growing, very early-stage tumors may warrant careful observation, known as active surveillance, rather than aggressive treatment.

When treatment is required, the urologist may recommend either radiation therapy or the surgical removal of the prostate, known as a radical prostatectomyRadiation therapy can take several forms, with the most common being an external beam of radiation to tar­get the prostate and kill cancer cells. The most common form of external radiation is image mod­ulated radiation therapy (IMRT). IMRT generally involves five treat­ments per week for eight weeks.

A small number of cancer centers offer another form of external radi­ation known as proton therapy. Proton therapy is controversial4 because its cost greatly exceeds that of IMRT, and numerous experts have argued that there is insuffi­cient data to prove that it is more effective or less toxic.

For patients who do not want to undergo repeated treatments, referred to as fractions, brachyther­apy provides a highly effective option. Brachytherapy involves a single, surgical insertion of radio­active seeds into the cancerous por­tions of the prostate.

Before deciding on a treatment option, it is vitally important that you and your loved one understand the nature of each, as well as its potential short- and long-term side effects. It is advisable to get more than one opinion. Consider scheduling a consultation with both a urologist and a radiation oncologist. You may also find it helpful to do some research into the disease and your treatment options. The National Comprehensive Cancer Network at nccn.org provides excellent treatment guides based on disease and stage.

Are There Significant Side Effects of Treatment?

Prostate cancer treatment, whether involving surgery or radiation, can cause a host of short- and long-term side effects. Transient side effects are generally tolerated well. Long-term problems with incontinence and or erectile dysfunction, however, can have a major impact on a man’s qual­ity of life. Though estimates vary widely, it is reasonable to assume that such long-term or permanent side effects may occur in significant percentage5 of all patients.

When surgery is performed, a nerve associated with sexual func­tion can be severed. A skilled sur­geon may be able to spare the nerve, but there are no assurances. Radi­ation often damages the nerve, though the onset of symptoms may be delayed by as much as one to two years. You should actively question your physicians about their out­comes—specifically the frequency with which their patients experience long-term problems with inconti­nence and/or impotency.

What Is the Most Import­ant Thing You Can Do to Help Your Partner When He Is Diagnosed with Prostate Cancer?

First, encourage your loved one to slow down, despite the anxiety generated by a potential diagnosis of cancer, and gather the informa­tion needed to make truly informed decisions before proceeding with a biopsy or treatment. A great deal has been written about the overdi­agnosis and overtreatment of pros­tate cancer in recent years—with much of the controversy centering on the appropriateness of PSA test­ing among relatively young patients. Before undergoing a biopsy, talk to your doctor(s) about their confi­dence in the PSA scores and whether it may be wise to repeat the test in three to six months before proceed­ing to a biopsy.

This is your first step as you seek to become an expert on the disease, its presentation, and treatment. Once you have availed yourself of the best available information and medical opinions, you are ready to serve as an advocate who ensures that your loved one receives the most appropriate treatment based on the particular stage of disease. Remember, that may mean active surveillance rather than active treat­ment. You want him neither over­treated nor undertreated, both of which are real possibilities with prostate cancer.

Finally, be sure you tune in to the potential impact of the disease and its treatment on your loved one’s quality of life, as well as his self-es­teem. Issues of sexual function affect both of you, and being able to engage in open and effective dia­logue is important to the health of the relationship. You may wish to seek help from a counselor trained to address such issues.

Though prostate cancer is often cured, it may nonetheless take a toll on the family. The more empow­ered you and your loved one are with information, the greater your probability of limiting this toll and ensuring the best possible outcome from treatment.

References
1. SEER Cancer Statistics Fact Sheets: Prostate Cancer. National Cancer Institute website. Avail­able at: http://seer.cancer.gov/statfacts/html/ prost.html. Accessed July 25, 2016.
2. PSA Velocity Does Not Improve Prostate Can­cer Detection. National Cancer Institute website. Available at: http://www.cancer.gov/types/pros­tate/research/psa-velocity-detection. Accessed July 25, 2016.
3. Understanding Your Pathology Report: Pros­tate Cancer. American Cancer Society website. Available at: http://www.cancer.org/treatment/ understandingyourdiagnosis/understandin­gyourpathologyreport/prostatepathology/pros­tate-cancer-pathology. Accessed July 25, 2016.
4. Wisenbaugh ES, Andrews PE, Ferrigni RG et al. Proton beam therapy for localized pros­tate cancer 101: Basics, controversies, and facts. Reviews in Urology. 2014;16(2):67-75. doi: PMC4080851.
5. Pardo Y, Guedea F, Aguiló F et al. Qual­ity-of-life impact of primary treatments for localized prostate cancer in patients with­out hormonal treatment. Journal of Clinical Oncology. 2010;28(31):4687-96. doi: 10.1200/ JCO.2009.25.3245.

 

How to Transform a Doctor’s Appointment into A Shared Opportunity for Learning and Collaboration

Patients’ often express varying levels of dissatisfaction following appointments with their physicians. One of the most frequent complaints centers on a lack of clear, empathic communication whereby the patient and physician exchange information that not only serves to reinforce their interpersonal relationship and trust, but also facilitates collaborative decision-making.

Before this problem can be addressed, physicians must first be aware of the deficit. According to an article in the Ochsner Journal, “Tongue et al reported that 75% of the orthopedic surgeons surveyed believed that they communicated satisfactorily with their patients, but on 21% of patients reported satisfactory communications with their doctors.”[i] Similarly, “A study released by the nonprofit Cancer Support Community found that more than half of patients with cancer feel unprepared to discuss treatment options with their medical team…”[ii] In fact, we know from research that “…Only 36 percent of patients facing important medical decisions indicated that they were extremely well informed about the decision confronting them.”[iii]

Yet, rather than assign culpability to the doctor for this informational deficit, the patient often excuses it by saying such things as I know my doctor is very busy and doesn’t have time to answer all of my questions or I didn’t remember an important question until after I left the examining room. While other patients are simply too intimidated to speak up out of fear of repercussions.

Poor communication clearly comes at a high price to the patient: “…Unsatisfactory communication by healthcare providers (including too little information, too much information, and/or abrupt or blunt sharing of information) is named the second highest reason for suffering by cancer patients.”[iv]  Physicians, too, pay a price when they fail to satisfy their patients: “Satisfied patients are less likely to lodge formal complaints or initiate malpractice complaints [and] are advantageous for doctors in terms of greater job satisfaction, less work-related stress, and reduced burnout.”[v]

A failure to receive informed consent may carry the greatest cost – both in terms of patient angst and the possibility of litigation! Informed consent, by definition, means the patient must understand all of the standard treatment options for their disease, as well as how these options differ in their potential efficacy, side-effects (short-term and long-term), costs, and other factors. Only then is the patient in a position to assess relative risk versus relative reward.

There are steps patients can proactively take to transform encounters with their physicians from ones of frustration into opportunities for learning and collaboration. Before your first or next appointment, consider the following:

1.      Consider having a family caregiver on-board who will attend the appointment and act as your scribe and advocate – ensuring that the information exchanged during that encounter is faithfully recorded, and your needs respected and addressed.

2.      Identify trustworthy sources of information that will help you understand more about your disease so that your time with your doctor is not spent on the basics, but on very pertinent questions about your disease and treatment options. For cancer patients, such sources include: Major NCI Cancer Centers, NCCN.org, and the American Cancer Society to name but a few.

3.      With your caregiver’s assistance, spend an hour developing a list of questions in advance of your appointment. Consider how the answers to these questions might impact your decisions about treatment. Be clear about what you want to know, as well as what you do not want to hear from your physician. Since there may not be time to answer them all, list them in priority order.

4.      Think about how your personal values will come into play when considering treatment options. Write them down, and be in a position to share them with your physician. Personal values vary dramatically, e.g., some cancer patients want to have every possible treatment exhausted before ceasing active treatment, whereas others may put a higher priority on quality of life during the last stages of their cancer.

5.      If your doctor’s office is agreeable, consider providing your questions to your physician’s nurse a few days in advance of the appointment with a note indicating that these are topics you hope to have covered by your doctor.

6.      When your physician provides answers to your question, ask for clarification if necessary – particularly if there is medical jargon that you do not understand.

7.      When agreeing to a treatment, reiterate your understanding of all issues related to the treatment before consenting to it.

Physicians can also take meaningful steps to optimize the learning and collaboration that occurs during patient appointments, by considering:

1.      How you provide information is as important as the informational content.

2.      The warmth and empathy with which you welcome your patients into the therapeutic relationship will be a tremendous determinant of their comfort and satisfaction with each encounter.

3.      Patients may not want certain types of specific information, such as the statistical probability of survival after five years, but virtually every patient wants you to be honest and forthright in answering their questions.

4.       Because you have obvious constraints on your time, there may be tremendous value in having your nurse, nurse educator or social worker available for further consultation with the patient.

5.      A patient’s decision regarding treatment (or refusal of treatment) may be incongruent with your personal values and thus frustrating. What is important, however, is your agreement that the patient made it from an informed perspective after weighing the pros and cons, and considering their personal values.

6.      You will be the beneficiary of excellent communication, and may wish to seek out resources to further hone your skills in this regard.

The operative word for both patient and physician is collaboration. From that collaboration, trusting and valued relationships can be built that enrich the lives of patients and providers. 

 

[i] The Ochsner Journal2010 Sring 10(1):38-43

[ii] Cure Today.  http://www.curetoday.com/advocacy/cancersupportc/elevating-the-patient-voice-study-finds-patients-not-prepared-to-discuss-treatment-options

[iii] – Veroff et al. Health Affairs. February 2013.

[iv]  – Bevan & Pecchioni, Patient Education and Counseling, 71

[v] Oschner Journal. Pg.

NEW REVIEW FROM CATHOLIC HEALTH ASSOCIATION -- Appearing in Health Progress

The following review appears in the March/April 2016 issue of Health Progress.  Lori and I are grateful to the Catholic Health Association for making more people aware of our book, and for the very kind and comprehensive review!

PLEASE CLICK ON THE LINK BELOW TO ACCESS THE REVIEW:

https://www.chausa.org/publications/health-progress/article/march-april-2016/book-review---After-You-Hear-Its-Cancer-A-Guide-to-Navigating-the-Difficult-Journey-Ahead

 

The Power of Post-Traumatic Growth to Help Heal Cancer Patients

The Transforming Power of Stress

There are few life events that can transform our daily reality more swiftly than a diagnosis of cancer. A once neatly planned future can seemingly evaporate in the wake of an overwhelming existential threat. The degree to which we remain mired in this nether-land of despair can be a function of the severity of our cancer, coupled with a myriad of variables – from our psychological health to our spirituality.

Fortunately, for most patients, the profound shock f cancer diminishes significantly over a relatively short period of time. For others, however, the distress associated with cancer may be a frequent or constant companion on the cancer journey, and it may even lead to post-traumatic stress disorder (PTSD).

There is yet another group, though, whose brush with mortality transforms them in a life-affirming direction. For these patients, the threat of cancer results not in PTSD, but in quite the opposite – post-traumatic growth (PTG).

PTG vs PTSD

The term post-traumatic growth was first coined by researchers Richard Calhoun and Lawrence Tedeschi more than two decades ago.[1] Calhoun and Tedeschi stated that two criteria must be met to satisfy their definition of post-traumatic growth: 1) The individual must struggle with a life-changing event; 2) that struggle then leads to profound growth and change.[2] Such growth may take many forms, including enhanced personal relationships, a deepened sense of spirituality, or an awareness of the transcendent meaning of life.[3]

It could be argued that scientists such as Calhoun and Tedeschi have simply formalized and named an idea that predates them by millennia: the indomitable spirit of human beings. It is a force that allows us not only to overcome seemingly insurmountable adversity, but to derive profound meaning from the experience. It has long been a topic of interest to philosophers and poets. Shakespeare eloquently stated: “Sweet are the uses of adversity which, like the toad, ugly and venomous, wears yet a precious jewel in his head.” [4]

The Illuminating Wisdom of Victor Frankl

One of the most profound examples of post-traumatic growth comes not from a cancer patient, but from Viktor Frankl, an Austrian psychiatrist deported to Auschwitz by the Nazis:

"The dawn was grey around us; grey was the sky above; grey the snow in the pale light of dawn; grey the rags in which my fellow prisoners were clad, and grey their faces. I was again conversing silently with my wife, or perhaps I was struggling to find thereason for my sufferings, my slow dying. In a last violent protest against the hopelessness of imminent death, I sensed my spirit piercing through the enveloping gloom. I felt it transcend that hopeless, meaningless world, and from somewhere I heard a victorious “Yes” in answer to my question of the existence of an ultimate purpose. At that moment a light was lit in a distant farmhouse, which stood on the horizon as if painted there, in the midst of the miserable grey of a dawning morning in Bavaria. “Et lux in tenebris lucet” – and the light shineth in the darkness."[5]

Frankl had endured unrelenting trauma – including the death of his family – and yet his indomitable spirit was able to rise above it – to be set free. Reflecting on his experiences, Frankl offered this guidance: “The way in which a man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity – even under the most difficult circumstances – to add a deeper meaning to his life.”[6]

Cancer has the power to inflict profound suffering, but only the human spirit has the power to transform that suffering into tremendous growth – growth that causes one to rise above an uncertain future, and find profound meaning in one’s relationships, faith, and the simple joys of life.

 

 [1] Calhoun, L. G., & Tedeschi, R. G. (1995).Trauma and transformation: Growing in the aftermath of suffering. Thousand Oaks, CA: Sage.

 [2] Sears, S. R., Stanton, A. L., & Danoff-Burg, S. (2003). The yellow brick road and the Emerald City: Benefit finding, positive reappraisal coping, and posttraumatic growth in women with early-stage breast cancer. Health Psychology, 22(5), 487-497.

 [3] Stanton, A. L., Bower, J. E., & Low, C. A. (2006). Posttraumatic growth after cancer. In L. G. Calhoun & R. G. Tedeschi (Eds.), Handbook of posttraumatic growth: Research and practice (pp. 138-175). Mahwah, NJ: Erlbaum.

 [4] Read more at: http://www.brainyquote.com/quotes/keywords/adversity_3.html

 [5] Frankl, V. E. Man’s search for meaning. (1984). Boston, MA: Beacon Press, p. 60.

 [6] Ibid., p. 88

When Initial Treatment Proves Insufficient: Looking for a Silver Lining

“Cancer is not a straight line. It’s up and down.”[i]

Elizabeth Edwards

 

When an initial treatment proves insufficient

Cancer treatments fail. It’s that simple. Though patients enter treatment with great hope, that hope may be dashed when either further evidence of disease or proof of recurrence is discovered. Sometimes the failure is apparent immediately, as was the case with my wife, Lori’s, lumpectomy. Other times the disease reappears months, years, even decades later. Evaluation of the effectiveness of your cancer treatment depends upon the modality used.

Hitting the reset button

If your initial treatment failed to cure your cancer, than you have reached another critical signpost along your journey: The need to modify your treatment plan to include new modalities of care. It’s a bit like hitting the reset button and starting the game over. This can be a particularly difficult time for many patients because the preferred treatment option has proven unsuccessful, often triggering new waves of anxiety and doubt.

The “middle stage” of cancer

Many patients enter a midpoint in their journey with cancer. It is what author and ovarian cancer survivor Susan Gubar defines as the “middle stage.” Writing in a June 5, 2014 article in the New York Times, Gubar stated:

"For some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it—unless you are first hit by the proverbial bus—but not now, not necessarily soon."

The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.

Still, quite a few patients with some types of leukemia or lymphoma, prostate or ovarian cancer live for years. While in the 1970s, 10 percent of women with metastatic breast cancer survived five or more years, today up to 40 percent do. Chronic disease may lack the drama of diagnosis and early treatment; even friends can get bored by mounting details. Its evolution does not conform to the feel-good stories of recovery that most of us want to read. But neither does it adhere to the frightfully degenerative plot of quickly advancing tumors.[ii]

Allowing for disappointment while not relinquishing hope

When you hit these milestones, it is time to be kind to yourself: a time to express your disappointment without relinquishing your hope. You will be traversing a new path on your journey, but first, you must understand how the additional knowledge acquired to date about your condition impacts your staging, prognosis, and recommended treatment options. Your physician should provide this information, as well as recommended modifications to the treatment plan.

Now’s the time to take out your compass and reassess the direction you are headed. It is essential that you go through an appropriate level of due diligence with your doctor regarding the next phase(s) of treatment. Just as you inquired about efficacy, side effects, treatment duration, and other factors prior to your first course of treatment, you need to repeat the process again now. Three very important questions to consider are:

1. what are the goals of this treatment;

2. what is the likelihood it will be successful; and

3. what short-term and long-term effects may the treatment have on my quality of life? Only once you’ve completed this process can you truly provide your physician with informed consent to proceed.

Due diligence déjà vu

Just as you asked many questions about your initial treatment, so, too, must you feel fully informed about the next steps in your journey. In addition to understanding the fundamental nature of the recommended treatment, you may also wish to ask your physicians the following questions:

·         Why might this treatment be effective when others have failed?

·         Are there other options for treatment that we should discuss?

·         What are the side effects or after-effects of treatment that I may experience?

·         Who will perform this treatment, and what are his or her qualifications for         doing so?

·         Will my insurance cover the cost of this treatment?

·         Where I can learn more about this treatment before agreeing to it?

It may be helpful to then take a few days, do your own research, talk with your caregiver, and then come to the most informed decision possible. Regardless of the outcome, you will feel as though you entered this phase of treatment with a solid understanding of its probable outcome, side effects, and costs.

The End of Active Treatment for Lori

Lori endured a second major surgery—bilateral mastectomies. The difficulty of the recovery was far more than Lori or I anticipated.

(IN LORI’S WORDS) Once I had a chance to digest the news about my initial pathology, I knew I needed more surgery—a mastectomy. I also knew that my type of cancer was also more likely to be present in the opposite breast and to evade early detection by imaging. So, I opted for bilateral mastectomies. It would take coordination between my breast surgeon and my reconstructive surgeon, which even under the most optimal circumstances can take several weeks. I decided to allow myself my hour of sadness, but then take that energy, become my own advocate, and push hard to get things done as soon as possible.

While waiting for my second surgery, I knew I needed to take care of my spiritual, psychological, and physical needs. I packed much of our house to get ready to move, took time to exercise, read my Bible, talk to friends. Mother’s Day was during that time, and all I wanted was to see my sons, so my husband arranged for them to fly home from California and Wisconsin for the weekend. We talked, went to church, and even took in a baseball game. My surgery was scheduled for early the next week.

The day of surgery was also the day before our scheduled move. My sister Janet, a nurse at Duke University Medical Center, came the night of surgery to help with my care and allow John to be with the movers the next day. She stayed with me those first few days when I felt so physically helpless. She brought me “home” to our new house (and new beginning for me). Her calming presence, encouragement, and hands-on care were invaluable. I will always be grateful she was there by my side. My brother Chris and his wife Gail took the second watch and stayed for several days, helping me as I struggled to gain strength, as well as helping John unpack our new house. They all dropped their jobs, families, and plans to come and help. Having my strong support system was a tremendous blessing, and I strongly believe it was a key to my recovery.

The final pathology report came out. I held my breath, said a prayer for strength, and waited on the other end of the phone while Dr. V. read me her findings. There had proved to be many spots of cancer creeping through my breast—that was the scary news. But this time there was excellent clearance around the tumor—the margins were negative! A genetic test done to predict my recurrence was also low—so I was not going to need chemotherapy. My risk could be reduced by taking a pill each day to block estrogen.

I knew I had found a silver lining—and a new beginning. Three weeks later I was back at work, now armed with a personal story to complement those of my patients. We would help one another on this journey.

 

Order After You Hear It's Cancer: A Guide to Navigating the Difficult Journey Ahead at:

http://www.amazon.com/After-You-Hear-Its-Cancer/dp/1442246251/ref=sr_1_3?ie=UTF8&qid=1423064996&sr=8-3&keywords=john+leifer#

[i] Elizabeth Edwards, BrainyQuote, http://www.brainyquote.com/quotes/authors/e/elizabeth_edwards.html

[ii] Gubar, “Living with Cancer.” 

How Much Do Your Really Want to Know About Your Prognosis?

If you have been recently diagnosed with cancer, now might be a good time to ask yourself how much information do you want your physician to disclose about your condition. The truth about one’s diagnosis and prognosis can be either uplifting or it can usher in a harsh, new reality. For some patients, a future, once meticulously planned, can change with the utterance of a few words by their doctor.

Despite the risks of reducing hope and injuring our psyches, the majority of patients want to know the truth, albeit to varying degrees of completeness. Here is a sampling from the hundreds of research studies examining this issue:

·         “Our findings suggest that most people do want honest information, even if the news is bad. We found that 27 of 27 enrolled patients initially reported wanting to know all the available information about their cancer, prognosis, treatment benefits, and treatment side effects.”[i]

·         “Four relatively early studies reported that almost all patients (96–98%) wanted to be told whether their illness was cancer. Ten studies showed that many patients (57–95%) wished to receive all the information available, both good and bad). Four studies reported that most patients wanted to know about their chance of a cure (91–97%) and how effective the treatment of their cancer was (79–98%). However, four studies suggested that a lower percentage of patients (27–61%) wished to discuss their life expectancy.”[ii]

·         “Most oncology patients also want to know their prognosis and have rated prognostic information as the most important element of communication—more important than diagnostic disclosure or treatment information.”[iii]

·         “Younger patients, female patients and more highly educated patients consistently desired to receive as much detailed information as possible and to receive emotional support. Younger and more highly educated patients also wanted to participate in decisions regarding their treatment.”[iv]

Regardless of what the research tells us, the bottom line is that there is no right or wrong when it comes to seeking or avoiding information about your prognosis. Despite what many research studies reveal, there are still many patients who are quite content to remain comfortably uninformed about certain stark realities. They may claim that want to know everything, but may not be ready to receive the information when they do.[v]

Dana B. knew what information she did and did not want to receive from her physician:

I did want to know how the staging happened, but I did not want to know my likelihood of five-year survival. Different people handle things in different ways. For me, if someone told me that I had a 30 percent chance of living for five years, my hope just went down. Whereas if I go into it blindly—not knowing the percentage—then I can make it in my mind whatever I want it to be. I’m naturally pessimistic, so to maintain optimism, I need to not go there with the numbers.[vi]

So, once again, before you ask your physician for more information about your diagnosis and prognosis, ask yourself, “How much do I want to know about my disease?” The Medscape website suggests cancer patients consider how they might respond to the following questions from their physician:

·         “Many patients want to know the prognosis. Is this true for you?

·         Some people might not want to know how the cancer will affect survival, but wouldn’t mind someone telling their families. What do you prefer?

·         What are you expecting to happen?

·         How specific do you want me to be?” [vii]

 

THIS TOPIC IS COVERED IN MORE DETAIL IN AFTER YOU HEAR IT'S CANCER: A GUIDE TO NAVIGATING THE DIFFICULT JOURNEY AHEAD.  I would encourage you to read the book and share it with loved ones who are also on the journey. 

 

[i] Thomas J. Smith et al., “A Pilot Trial of Decision Aids to Give Truthful Prognostic and Treatment Information to Chemotherapy Patients with Advanced Cancer,” Journal of Supportive Oncology 9, no. 2 (2011): 83, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3589716/pdf/nihms-447553.pdf.

[ii] Maiko Fujimori and Yosuke Uchitomi, “Preferences of Cancer Patients regarding Communication of Bad News: A Systematic Literature Review,” Japan Journal of Clinical Oncology 39, no. 4 (February 3, 2009): 213, http://jjco.oxfordjournals.org/content/39/4/201.full.pdf.

[iii] Bethany J. Russell and Alicia M. Ward, “Deciding What Information Is Necessary: Do Patients with Advanced Cancer Want to Know All the Details?” Cancer Management and Research, 3, (2011): 194.

[iv] Fujimori and Uchitomi, “Preferences of Cancer Patients,” 213.

[v] L. Furber et al., “Investigating Communication in Cancer Consultations: What Can Be Learned from Doctor and Patient Accounts of their Experience?,” European Journal of Cancer Care 22 (2013): 660.

[vi] Dana Bart, in discussion with the author, May 14, 2014, Overland Park, Kansas.

[vii] Medscape website, http://www.medscape.com/.

What Do You Value Most in a Physician?

It’s a seemingly easy, but extraordinarily difficult question to answer! Yet, what could possibly be more important than finding the right physician to help guide you through your journey with cancer!  Though there may be no definitive answer, there are criteria that you may find highly useful in assembling your care team. Here’s where Lori and I would start the process:    

·         Participation in your insurance plan. Because of the extraordinary cost of health care services, the first screen that most people use when considering a physician is whether they participate in the patient’s insurance plan. Unfortunately, some physicians may be inaccessible to you by virtue of being out of network—meaning that your insurance company has not contracted with these doctors to be part of their physician panel. Unless you are willing to pay heavily out of pocket, which can be financial devastating, you will need to find an in-network provider.

·         Reputation for clinical excellence. Though it is difficult to quantify, every physician knows that there is tremendous variation in quality among doctors. Let’s call it medicine’s dirty little secret. There are ways to improve your probability of finding a clinically excellent doctor: 1) Begin by searching out physicians who enjoy a strong reputation within the community among both consumers and health care professionals—there is probably a good reason for them to be viewed positively; 2) consider a physician who practices at a nationally recognized cancer center.

·         Training and credentials. Lori and I feel this issue bears repeating because the depth and breadth of a physician’s training can also provide a proxy for quality. A basic starting point is to ensure your physician is Board-certified. You may then want to consider a physician who has received sub-specialized training in the form of a Fellowship (it should be noted that there are no fellowships in certain sub-specialties). Some patients also consider where their physicians trained—believing that a Fellowship from a prestigious cancer institute provides yet another level of assurance. As you go through this discernment process, please realize that there are also superlative physicians who do not possess these credentials.

·         Experience. Nothing trumps the value of experience—and the insight, proficiency, and wisdom that can be gleaned through years of practice. Reams of data exist showing the correlation, for instance, between the number of surgical procedures performed by a physician, and his or her outcomes. As Malcolm Gladwell discusses in his book, Outliers, it generally takes a great deal of time to achieve mastery in any endeavor: “In fact, researchers have settled on what they believe is the magic number for true expertise: ten thousand hours.”[i]

·         Alignment with a specific hospital or health system. Your physician is but one cog in the medical “machine” that provides care to cancer patients. The comprehensiveness, quality, and cutting-edge nature of this care will vary dramatically between freestanding centers, hospitals, and health systems. What may be available at your local community hospital could be a mere subset of the offerings at an academic medical center. Depending upon your type of cancer, where you are treated could have a significant impact on your outcome. Remember, if your PCP is an employee of a hospital or health system, he or she is probably strongly encouraged to refer you to specialists within this system. That may or may not be in your best interests.

·         Referral Network. It is important that, when selecting your first specialist, you have some sense of the other physicians to whom you may be referred. If your initial referral is to a surgeon, he or she will likely have a preferred medical and radiation oncologist. Together, they will form your cancer treatment team. Ideally, you would want to conduct some level of due diligence on all of these doctors—but recognizing that timeliness of treatment may be important, that is probably not feasible. Therefore, there is even more reason for you to be comfortable with the system into which you are referred. It is essential that you be confident that all of the physicians meet a minimum standard of excellence.

·         Regular Participation in a Tumor Board. Many cancer specialists attend regularly scheduled meetings in which a panel of diverse specialists review patients’ findings and recommended treatment plans. It allows a specialist, and their patient to receive a multi-disciplinary review of their care and make any recommended course corrections. Lori and I feel strongly about the importance of tumor boards. We would consider making participation a pre-requisite when selecting a specialist. Keep in mind, however, that the treatment of many early stage cancers is so straightforward as to not warrant multi-disciplinary review. Ask your specialist if he or she plans to present your case. If so, request a follow-up report on the consensus of the tumor board regarding your treatment.

·         Gender. Whether you seek care from a male or female physician is primarily a matter of comfort for some patients. This issue most frequently comes into play in cases of breast cancer and genito-urinary tract diseases such as cervical cancer.

·         Interpersonal style. The communication style and emotional intelligence of their physicians matters greatly to some patients and far less to others. Some patients simply want a physician with unquestionable clinical skills and are willing to defer to their physician’s judgment. Others want to actively participate in treatment decisions and need a physician who is an extremely effective communicator, demonstrates clear empathy, and welcomes you as partner on this journey. For patients facing a difficult prognosis, the emotional intelligence and emotional availability of their physician can make a pronounced difference.

 

This post is an excerpt from After You Hear It's Cancer: A Guide to Navigating the Difficult Journey Ahead (Rowman & Littlefield, July 2015). 

For readers interested in exploring these topics in more detail,  please also consider reading my earlier book: The Myths of Modern Medicine: The Alarming Truth about American Health Care (Rowman & Littlefield, September 2014). Chapter 5 focuses exclusively on physician-related issues and elaborates on a number of the aforementioned topics.

 

 

[i] Malcolm Gladwell, Outliers (New York: Little, Brown & Company, 2008).