cancer care

When Initial Treatment Proves Insufficient… Searching for the Silver Lining

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shutterstock_252209614“Cancer is not a straight line. It’s up and down.”

—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) where we were greeted by a chaotic setting of John supervising the movers. 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.

 

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

[ii] Gubar, “Living with Cancer.”

Black and White: A Disturbing Look at Racial Disparities in Cancer Prevalence, Outcome and Care

By in Cancer, Healthcare, Healthcare reform 1 Comment Tags: , ,

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Who Dies From Cancer?

Few things are black and white, yet when it comes to determining who will survive cancer, race may be fate. Doubt my words?  The American Cancer Society described the situation succinctly:  “African Americans are more likely to develop and die from cancer than any other racial or ethnic group.”

We are not talking about subtle differences here. We are talking about staggering variations in outcome based upon race. Death rates for prostate, cervical, and stomach cancers are more than 200 percent greater among African Americans than whites.[i] Furthermore, though breast cancer is less common among African American women, their death rate is markedly higher.[ii]

The Role of Socio-Economic Status in Determining Fate:

Socio-economic status definitely plays a role, though how large of one, no one knows for certain. We do know that “People with lower socioeconomic status (SES) have dispropor­tionately higher cancer death rates than those with higher SES, regardless of demographic factors such as race/ethnicity.”[iii]

 Presumably, a lower socio-economic status puts one at risk by: 1) reducing access to health care resources for the prevention, detection, and treatment of cancer – often resulting in patients presenting at more advanced stages; 2) increasing reliance on behaviors that may foster development of cancer, such as smoking, poor dieting, and a sedentary lifestyle; 3) delaying the onset of treatment until late in the development of the disease; 4) exacerbating co-morbid conditions through lack of adequate treatment, thus negatively impacting the person’s health and functional status.

 Lower SES also impacts the options available for care, as can be seen in a survey published in the Journal of Clinical Oncology that examined participation in clinical trials:

 The study surveyed 5,499 patients who were newly diagnosed with breast, lung, colorectal, or prostate cancer. Regardless of age, lower-income patients were much less likely to participate in clinical trials, and the trend persisted even among patients who were universally covered by Medicare. Patients who reported an annual income less than $50,000 were approximately 30% less likely to participate in clinical trials than those reporting a higher income. Looking at lower income levels, patients who made less than $20,000 per year were 44% less likely to participate in a clinical trial than patients who made more than $20,000.[iv]

We know that a disproportionate share of the lower SES population is African American. Since African Americans have a long history of being the victims of unscrupulous medical experimentation, there may be an understandable cultural apprehension about participating in such trials. But there’s more to story…of that I’m confident.

SES is Only Part of the Story:

The disparity in cancer prevalence and outcomes among African Americans transcends SES. In fact, there are factors completely independent of societal influence, such as genetics, that may help explain some of the disparity. African American women often develop forms of breast cancer that are highly resistant to treatment. This may well result from a defective gene. The same could be true of the more aggressive variants of prostate cancer seen in African American men.

 A more insidious reason for a higher mortality rate amongst African American cancer patients is that they simply don’t get comparable care to their white counterparts. The proof seems abundant:

  •  The February 15, 2008, edition of Cancer featured a study in which the authors examined care received by 143,512 Medicare beneficiaries diagnosed with malignant breast, colorectal, lung, and prostate cancer was analyzed. The investigators concluded that:
    • “There were racial disparities for 6 of the 7 cancer therapies investigated.”
    • Among women who had undergone a lumpectomy, black women were less likely to have received radiation therapy
    • Significant racial disparities were also noted for resection of lung cancer, adjuvant therapy for colon cancer, adjuvant chemotherapy and (neo)adjuvant radiation for individuals with rectal cancer, and definitive therapy for prostate cancer.
    • There was substantial variation in the unadjusted magnitude of racial disparities across cancer types. The largest disparity—about 15% difference between black and white patients—was noted among patients with early stage lung cancer, for which 76% of white patients and only 60% of black patients underwent surgical resection.”
  • “The length of time between an abnormal screening mammogram and the follow-up diagnostic test to determine whether a woman has breast cancer is more than twice as long in Asian American, black, and Hispanic women as in white women.”[v]

Discrimination in Care:

Discrimination is a blatant problem. The American Cancer Society states: “Discrimination is another factor that contributes to racial/eth­nic disparities in cancer mortality. Racial and ethnic minorities tend to receive lower-quality health care than whites even when insurance status, age, severity of disease, and health status are comparable.”

 In addition to failing to receive appropriate preventive, diagnostic, and treatment modalities, “Racial/ethnic and socioeconomic disparities also exist in cancer survivorship care. Lack of access to survivor care services is a major barrier to the health and well-being of cancer survivors who lack health insurance or who experience exclusions or restrictions on their policies.,” according to an article appearing in the February 10, 2013, edition of the Journal of  Clinical Oncology.

 African American not only fail to receive optimal cancer care, but if they are fortunate enough to survive cancer, they likely won’t receive appropriate survivorship care. If they are unfortunate enough to succumb to the cancer, they almost certainly won’t be the beneficiary of hospice services.

A 10X Difference in Hospice Care:

According to data from the National Hospice and Palliative Care Organization, 81.5% of hospice patients were white and 8.6% were African American. That’s nearly a 10X difference!  Yet, we know that hospice can make a tremendous difference in quality of life for end-stage cancer patients, as well as potential extend their survival. One could argue that some of the variation may be attributable to cultural differences in end-of-life care…but, again, I’m doubtful that tells the full story.

The facts regarding cancer prevalence and mortality amongst African Americans are black and white. The reasons behind them are shades of gray. If we are committed to an equitable health care system, it is our moral obligation not only to understand the causative factors behind the extraordinary differences in prevalence, care, and outcome, but to work assiduously to improve this situation.

 IOM’s Call to Action:

“In 2000, the Institute of Medicine convened a special panel to examine the underlying causes of racial disparities in health. The resulting book, Unequal Treatment (2003), concluded that health and mortality disparities result from many factors, including lower quality of care provided to racial minorities. Other factors include lack of familiarity with racially diverse patients at hospitals and clinics, institutional discrimination based upon health insurance status, conscious and unconscious bias among physicians, lack of cultural competence among health care providers, and mistrust of the health care system as well as language barriers among patients.”[vi]

Stepping Up to the Plate:

What have we done in the intervening 14 years to improve the situation; and what are we doing today to honor our commitment and change the fate of African American cancer victims?

 


[i]Cancer Facts & Figures for Afri­can Americans, available online at cancer.org/statistics.

 

[ii]Cancer Facts & Figures for Afri­can Americans, available online at cancer.org/statistics.

 

[iii] ACS

 

[iv] ASCO Journal of Clinical Oncology. ASCO Special Article. Clinical Cancer Advances 2012: Annual Report on Progress Against Cancer From the American Society of Clinical Oncology. J clin Oncol 31:131-161.

 

[v] Agency for Healthcare Research and Quality, “Addressing Racial and Ethnic Disparities in Health Care,” last modified April 2013, http://www.ahrq.gov/research/findings/factsheets/minority/disparity/

 

[vi] Stand Up to Cancer – Racial Disparities in Cancer: Statistics and Solutions. http://www.standup2cancer.org/article_archive/view/racial_disparities_in_cancer_statistics_and_solution

We’ve Made Great Strides in Treating Cancer, But Not Its Survivors

By in Cancer, Healthcare 2 Comments Tags: , , , ,

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From Death Sentence to Chronic Disease:

Few words are more emotionally-laden than “cancer.” It does not merely connote disease, but rather suffering and death. Fortunately, not only the perception of cancer but the reality of the disease are changing rapidly thanks to early detection and advancements in treatment that render many cancers, at worst, a chronic illness, and at best curable. Proof can be readily seen in statistics from the American Cancer Society: “The 5-year relative survival rate for all cancers diagnosed between 2003 and 2009 is 68%, up from 49% in 1975-1977.”

Of course, not all cancers have yielded to the advancements of medicine. Pancreatic cancer, metastatic melanoma, certain types of brain tumors, and other difficult diagnoses remain devastatingly difficult to treat. For some of these diseases, the differentiating variable is the stage at which they are diagnosed. Whereas there are excellent screening modalities for common cancers, such as breast and colon, other cancers, including ovarian, are often detected after they have metastasized to vital organs.

Nonetheless, the scales are tipping in favor of survivorship: “While cancer incidence is projected to almost double over the next two decades to 21.4 million new cases annually, the number of people living with a history of cancer (i.e., ‘survivors’) is expected to triple to 75 million worldwide by 2030.”

The Challenges of Survivorship:

Cancer survivors face a plethora of challenges – challenges that were unimaginable when they were originally diagnosed, and the focus was purely on ridding their bodies of the invading disease. Most patients have endured regimens in which their disease was cut-out, burned-out (with radiation), or “poisoned” (with chemotherapy). Depending upon the extent of their treatment, there may be lingering or permanent side-effects– ranging from peripheral neuropathy to heart damage. Some patients are cognitively impaired from whole-brain radiation, and many others bear deep, but invisible emotionally scars from the journey.

McCabe et al. described the medical challenge facing cancer patients as follows: “Cancer survivors are at increased risk for long-term morbidity and premature mortality, related directly to the cancer itself, to preexisting comorbidities, and to exposure to therapy.” As a result, cancer survivors need ongoing medical supervision by physicians who understand: 1) the specific treatment regimens that a patient received; 2) the outcome of these regimens; 3) the sequela of post-treatment side-effects that the patient is or may experience; 4) the patient’s prognosis; 5) the recommended screening or monitoring activities to ensure that the cancer remains in check.

Who is My Doctor?

But exactly who provides such care in today’ health system remains ambiguous, causing patients to fall through the proverbial “cracks” and not receive the care they need.  The Institute of Medicine stated that, “For patients, it can be a time of confusion both about what follow-up care involves and about which physician is responsible for follow-up care.” The IOM also proffered a solution:  “Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.” The report terms this as the “Survivorship Care Plan.”

Sounds simple and logical – the patient receives a roadmap providing “a summary of treatment and a specific detailed plan for surveillance follow-up and symptom management.” However, there appear to be four impediments preventing this vitally important step from happening: 1) oncologists are not compensated for creating such plans; 2) the short supply of oncologists limits their ability to take time away from the active treatment of patients for the construction of such plans; 3) most cancer patients receive multi-modality treatment that occurs across disparate treatment sites – necessitating consensus on the part of the multiple specialists regarding the patients’ care management plans; 4) oncologists are reluctant to facilitate transition of their patients to primary care physicians because they are less than convinced that PCPs have the clinical knowledge to properly manage cancer patients.

PCPs in Need of Respect:

In a study published in the Journal of Family Medicine, researchers found, “that a majority of PCPs perceive themselves as having an active role in the cancer-related follow-up care of survivors, most often in a co-management capacity with an oncologist. In contrast, most oncologists perceive that they directly provide cancer-related follow-up care themselves without much involvement from PCPs or other providers, a finding that parallels recent work documenting medical oncologists’ limited engagement in co-managing breast cancer care.”

A Call to Action:

Professional squabbles aside, the reality is that in fifteen years, there may be an additional 50 million cancer survivors. Just as medicine has made great strides in the early detection and treatment of cancer, now it must make comparable strides in addressing the profound needs of survivors. These hurdles to proper, ongoing care of cancer survivors must be overcome. Physicians need to be compensated for the time required to assemble detailed care plans, and primary care physicians must be appropriately educated to care for cancer survivors.