When Initial Treatment Proves Insufficient… Searching for the Silver Lining

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,

[ii] Gubar, “Living with Cancer.”

Five Essential Things to Know if You are Diagnosed with Cancer

shutterstock_210369577_1“When you hear the word ‘cancer,’ it’s as if someone took the game of Life and tossed it in the air. All the pieces go flying. The pieces land on a new board. Everything has shifted. You don’t know where to start.”  —Regina Brett[i]

A diagnosis of cancer can be overwhelming, but knowing a few basic things can help make the journey ahead far more manageable. Here are five key things you should know if you or a loved one has recently been diagnosed with cancer:

  1. It is normal to feel completely overwhelmed when you hear the word cancer. Despite the anxiety, and accompanying sense of urgency to begin treatment, you must slow down and be methodical about the next steps.
  2. Identify a caregiver who can be at your side throughout the journey ahead. Your caregiver will fill a number of important roles, including:
    • Serve as a scribe during your doctor appointments so that you have an accurate record of what transpires. This person can also be helpful in keeping other family members or loved ones informed.
    • Request copies of your records from all physicians seen related to your cancer. Be certain that the records include all imaging studies and pathology reports.
    • Help you navigate the complex health care system, while coordinating your care, as needed, across multiple physicians and treatment sites.
    • Provide essential emotional support.
    • Help you address basic functional needs at a time when many of your resources are consumed simply fighting your disease.
  3. Before you can proceed, it is essential that you understand your diagnosis, the goals of treatment, and treatment options based upon objective information presented by knowledgeable physicians.
  • Oftentimes this requires visiting multiple specialists – including surgeons, as well as medical and radiation oncologists. Since there often numerous methods for treating a disease, these specialists may render differing opinions regarding what is best for you.
  • It is important to keep in mind that specialists have an understandable predilection for the types of interventions they deliver – a surgeon may be biased towards surgical procedures just as a radiation oncologist is biased towards radiation therapy.
  • Such differing opinions can be confusing for the patient…particularly since you are now navigating in unfamiliar territory. Before making a decision about treatment, there are three things that you must know:
    • As a general rule, the treatment should be based upon a “standard of care” – meaning that there is a consensus in the medical community regarding the best method(s) for managing your disease. The National Comprehensive Cancer Network, or NCCN, publishes such standards of care, or evidence-based pathways, for many types of cancer. Consumer-friendly versions of such pathways are available for free on their web-site ( You would be well-advised to review the NCCN recommendations for your disease (and stage of disease). If your doctor is recommending a treatment that appears to deviate from the standards of care, ask him or her why.
    • There are pros and cons for every treatment – both in terms of the relative effectiveness of the treatment, as well as the short-term and long-term potential side-effects. Only by understanding these nuances of treatment can you make a truly informed decision about what is right for you.
    • There may be substantial differences in the costs associated with different interventions. While we all want and deserve the best treatment available, two treatments may be virtually identical in terms of the outcomes produced, but vary dramatically in costs. Before your out-of-pocket expenses grow astronomically, you may wish to discuss the projected cost of care with your doctors. Your physician should also inform you if he or she has a financial conflict of interest whereby they will profit more from the delivery of certain types of treatment. A urologist, for example who treats prostate cancer with a linear accelerator owned by the group has an ethical obligation to disclose this conflict to the patient.
  1. Now that you are armed with far more information about the best course of treatment for your condition, you need to decide who will deliver your care and where you will receive it. Before you put blind trust in your doctors, you need to know that not all physicians (or facilities) are created equal – in fact, there’s tremendous variance in the relative quality of care delivered by different doctors at different hospitals/clinics. Unfortunately, sorting out the good apples is not the easiest task. Here are three suggestions for improving the odds of having a highly competent medical team:
  • Learn as much as you can about your physicians’ training, and experience treating your particular disease. There’s nothing wrong with interviewing your physicians! You should be sizing up your doctor, not only in terms of clinical training/experience/competency, but also how you feel at a gut-level about having them lead you through this difficult journey.
    • Keep in mind that practice does not make perfect, but when combined with the right training and certain inherent skills, it can make a huge difference. For instance, an oncologic surgeon who, after completing a fellowship in breast cancer surgery, has been practicing for ten years at a premier facility may produce different results than a general surgeon whose most frequent procedure is repairing a hernia. Unfortunately, there is no readily available data that allows us to compare the relative competency of our physicians.
  • Consider the depth and breadth of the cancer treatment resources available at your facility of choice. Do your best to separate out the marketing hyperbole from the cold, hard facts regarding the facility’s capabilities. It’s relatively easy to go to the hospitals’ websites within your community and compare capabilities. If there is an NCI-designated Comprehensive Cancer Center in your community (which differs from an NCI-designated Community Cancer Center), and have not selected it as your provider of choice, you may wish to get a second opinion at this facility. If you have an early stage, easily treated disease, this may be less of a concern than with more advanced or difficult to treat tumors.
  • Be careful about listening to the advice of your backdoor neighbor or cousin Martha about who the best doctor in town is for your cancer. Their intentions will undoubtedly be spot on, but their knowledge may be highly flawed. Author Marty Makary, M.D., a Johns Hopkins physician, talks about Dr. Hodad – a popular physician with a wonderful bedside manner whose patients think he walks on water (HODAD turns out to be an acronym for hands of death and destruction).
  1. Never under-estimate the power of hope in helping get you through the journey. Though no one welcomes cancer into their life, a great many people experience tremendous growth as a result. Hope can be the force that helps you emerge on the other side…stronger, more resilient, and with a unique appreciation for the wonderful life you’ve been given.

There are many more steps to transforming an arduous journey into a manageable one. What I’ve outlined here are five of the most basic. If you would like to read more, I would strongly encourage you to read: After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead.

The book is available at (  or through the publisher – Rowman & Littlefiel (



I would welcome your questions or comments. 




[i] Regina Brett, BrainyQuote,

PROFITS vs. Patients in the escalating battle to conquer cancer

The high costs of cancer drugs puts them out of reach for many patients.

The high costs of cancer drugs puts them out of reach for many patients.

Beyond the caring rhetoric carefully crafted by providers of cancer treatment and therapeutics, there exists a motivation every bit as powerful as saving lives — reaping billions of dollars in profit. That’s what is at stake in the ongoing war on cancer — a war in which important battles have been won, but at a tremendous cost.

As the number of cancer patients grows and their treatments become increasingly expensive, we will find ourselves locked in an unwinnable war of attrition…unless reining-in costs becomes as much of a priority as expanding our medical armamentarium.

How the battlefield changed:

Despite the fact that cancer incidence rates have declined for the most frequently occurring types of the disease, cancer continues to impact 40 percent of all Americans, and it is responsible for 20 percent of all deaths. That translates into 1.66 million newly diagnosed patients annually and nearly 600,000 deaths, according to the National Cancer Institute. Incidence tells only part of the story, however. More importantly, the majority of cancer patients are surviving longer.

There are currently more than 14 million Americans who have survived cancer—a dramatic increase from the 3 million survivors in 1971. While much of this increase is attributable to population growth, improvements in cancer therapies have also played an essential role. As a result, for many patients, cancer has been transformed from a death sentence into a chronic disease that perhaps cannot be cured, but can be controlled for an extended period of time.

The soaring costs of care:

Fifty years ago, direct spending on cancer care equaled $1.3 billion. By 1995, spending had soared to $41.2 billion, and by 2010, it was an estimated $125 billion. That’s an almost 10,000 percent increase in direct spending over fifty years. Add in the indirect costs of care, such as lost productivity, and the numbers almost triple.

Cancer care was not the only part of the nation’s health care bill that rose dramatically over time. In 1950, total health care costs for the U.S. equaled $12.7 billion. By 2012, those costs had risen to $2.6 trillion – a 20,000 percent increase in the span of three generations

Such costs have taken quite a toll. Today, the single greatest cause of personal bankruptcy in America is medical bills. In fact, “The percentage of personal bankruptcies in the United States attributed to health care costs rose from 46.2% in 2001 to 69.1% in 2007.” Such statistics come as no surprise, since patients are bearing an increasing proportion of the cost burden associated with expensive treatments. Medicare beneficiaries who are often on a limited, fixed income are particularly hard hit.

What Lies Ahead:

The estimated cost burden for the coming decades is fuzzy at best. The NIH guesstimates that the direct costs of cancer care could range anywhere from $158 billion to $207 billion. A number of factors are contributing not only to cost escalation, but also to the complexity of forecasting.

We know that the projected level of growth in the 65+ segment of our population—which is the segment most affected by cancer—will result in a virtual tsunami of cancer patients. What we don’t know is how these patients will be treated, or the costs of emerging therapeutic modalities.

Furthermore, with the number of cancer survivors forecast to grow to 19 million by 2024, there will presumably be a dramatic increase in the long-term costs of controlling their disease and maintaining their well-being.

History demonstrates that the cost of cancer does not increase linearly, but rather in a manner reminiscent of Moore’s law—a factor that proves beneficial when describing the growing power of computers, but not the growing costs of care. Nowhere is this more apparent than in the skyrocketing costs of pharmaceutical products.

A Pharmaceutical Gold Rush

The pharmaceutical industry has doubled-down on its investment in cancer therapeutics—a wise move, considering the increased market demand reported by industry monitor, IMS:  “The global market for oncology drugs, including those used in supportive care, reached $91 billion in 2013…this compares with $71 billion in 2008 and $37 billion a decade ago.”

With demand soaring and sales burgeoning, much of pharmaceutical research now centers on beating cancer. IMS concluded that, “cancer therapies account for more than 30 percent of all preclinical and phase I clinical development products…”

It’s not just demand that is driving the soaring sales of cancer drug. It’s the manner in which drugs are priced. In the U.S., which accounts for 40 percent of all cancer drug sales, there are no governing rules regarding pricing, beyond what the market will bear. While most consumer products are priced based upon comparative value, the price of cancer therapeutics appears to be plucked from the ether with no relationship to the drug’s relative efficacy or toxicity.

Don’t take my word for it, look at the numbers: According to an article in the Journal of Clinical Oncology, “Of the 12 anticancer drugs approved by the FDA in 2012, only three prolonged survival, two of them by less than 2 months…yet nine were priced at more than $10,000 per month.” One drug, approved for the treatment of pancreatic cancer, was shown to extend survival by a mere 10 days.

According to an article published by the Mayo Clinic, “Last year, ipilimumab (Yervoy; Bristol-Myers Squibb, New York, NY) was approved by the Food and Drug Administration (FDA) for the treatment of metastatic melanoma. The benefit in survival over and above standard treatment was 3.7 months in previously treated patients and 2.1 months in previously untreated patients. The cost: $120,000 for 4 doses.”

It appears that $100,000 per year has been set as the minimum threshold for introducing new cancer therapies.  But it is not just the introductory pricing of drugs that is problematic. It is also the price inflation of cancer drugs that is raising costs astronomically. The price of imatinib, a drug used to treat CML (chronic myeloid leukemia) increased from $30,000 to approximately $90,000 over a ten-year period.

Lies, Damn Lies, and Statistics:

The pharmaceutical industry justifies what appears to be morally egregious behavior by explaining that drug costs are primarily driven by research costs. In fact, stating that the cost of bringing a drug to market now exceeds $1 billion has become almost a mantra—but it is patently invalid.

Pharma’s argument regarding the tremendous costs of research was effectively eviscerated in a November 15, 2013 article in the prestigious journal Cancer.  Authors Donald Light, Ph.D., and Hagop Kantarjian, M.D., demonstrated that the actual cost probably approaches $125 million or one-eighth of what has been claimed.

You Don’t Have to Sell Drugs to Profit from Cancer:

It’s not just pharma that is profiting from this gold rush.  Cash-strapped hospitals and health systems are lining up to ensure that cancer provides a rosy bottom line for their institutions.

Not only are facilities expanding the depth and breadth of cancer services offered, but they are now employing oncologists at an unprecedented rate. Such employment accomplishes multiple objectives: 1) It locks in the physicians who control patient flow in the market, thus locking in market share; 2) it allows the hospitals to increase the costs of the oncologists’ services by billing them as hospital outpatient services; 3) it allows hospitals to capture all the procedural revenue—imaging, radiation, and surgery—associated with these patients; 4) it allows hospitals to increase profits on the resales of cancer drugs using what is known as “340b” pricing.

Numerous other parties stand to profit handsomely from the growth of cancer—including, but not limited to health information technology companies that seek to capitalize on the tremendous data-demands associated with cancer research, medical technology vendors, and even manufacturers of prosthetics.

Re-establishing equilibrium between Patients and Profits:

Until payers realign incentives so that providers are rewarded based upon achieving the most efficient and effective patient outcomes over time, there will be an imbalance between the needs of patients and the pull of profits.

There are specific steps that can be taken today to achieve these objectives, including:

  • Physicians must act as fiduciaries for their patients’ health and well-being. As such, they must demand comparative effectiveness data that show the relative value of a cancer drug. Physicians can drive change simply through their prescribing patterns, and they must wield this power appropriately on behalf of their patients. This principle was proven effective when a group of oncologists at Memorial Sloan Kettering refused to prescribe the drug Zaltrap because it was twice as expensive as an alternative drug yet no more effective. The manufacturer bowed to the pressure and cut the price of Zaltrap by 50 percent.
  • The FDA can aid these efforts to move from “what the market will bear” pricing to value-based pricing by establishing minimal thresholds for comparative efficacy while also factoring in the comparative toxicity of drugs under consideration. .
  • There must be clear and unequivocal prohibitions on any conflicts of interest that allow physicians to profit, beyond their professional fees, for the provision of cancer therapeutics—be it a chemo agent, radiation treatments, or other modalities.
  • The Department of Justice must bring greater scrutiny to the acquisition of major oncology groups or other actions that may result in the creation of monopolies or oligopolies in cancer care.
  • Congress must reconsider the prohibitions on governmental agencies, such as Center for Medicare and Medicaid Services (CMS), from negotiating prices with pharmaceutical manufacturers.
  • As a society, we must struggle with through discussions of what we are willing to expend in order to extend life, while factoring in the patients’ probable quality of life. Discussions of “death panels” must yield to rational, albeit difficult conversations.

The Time to Act is Now:

 Health care providers and vendors have proven that they are incapable of being self-regulating. They have also proven that they are subject to the same moral vices as the rest of society, including greed. There needs to be immediate action to stop the profiteering off the backs of cancer patients, while war of attrition, simultaneously using our health care dollars wisely in the quest to conquer cancer.


PLEASE VISIT THE WEB-SITE FOR MY NEW BOOK, After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey  


Taking Your Foot off of the Accelerator


For Recently Diagnosed Cancer Patients and Their Families

There is one piece of advice that Lori and I offer without equivocation to newly diagnosed cancer patients – slow down…take your foot off of the accelerator, and realize that you have begun a journey not a sprint.  Though certain diagnoses mandate prompt action, it should never be at the expense of level-headed thinking that leads to a clear understanding of your options.

The Role of a Caregiver

Your first order of business is to identify a caregiver, often times a family member, who will accompany you on your journey. There will be moments when you are unable to process important information about your diagnosis and treatment.  That is when your caregiver becomes your scribe – taking notes, recording comments, doing whatever is necessary to retain critical data to help you make informed decisions.

The Right Care Team

The second order of business is to ensure that you are enlisting the right health care resources to give you the optimal chance of a positive outcome.  Your cancer care team will likely include a multi-disciplinary array of providers. Physicians, like all human beings, vary significantly in their knowledge, competency, experience, and interpersonal style. Since you are entrusting your health to these individuals, you should get to know them, and feel comfortable with them.

As part of this process, you need to also consider the health system with which your doctors are affiliated. Health systems, too, vary dramatically in their capabilities. If you have a complicated diagnosis or a difficult condition to treat, some systems may be better suited to meet your needs, such as National Cancer Institute (NCI) affiliated centers or more sophisticated community cancer centers.

Understanding Standards of Care

Next, it is imperative that you understand your diagnosis. For virtually every diagnosis, there is a standard of care – pathways that define the optimal methods for treating a disease at different stages of development.  As a consumer, there are tools that describe many of these care pathways. You can find them online at

You will quickly discover that there are often multiple options or pathways for treating your disease. Different treatments may be equally effective in controlling or eliminating your cancer, but vary in other important ways. Take the treatment of Stage 1 breast cancer for instance. A lumpectomy followed by radiation has the same statistical likelihood of curing your cancer as a mastectomy, but is far less invasive, requires little to no reconstructive surgery, costs less, and involves a far shorter recover. Yet, for some very legitimate reasons, many women still opt for the mastectomy. There’s not a right or wrong decision…as long as the patient is truly informed as to the options and trade-offs.

Seeking a Second Opinion

Once your care team has provided you with a diagnosis, including the location, stage, and grade of your cancer, as well as treatment recommendations, it’s time to consider a second opinion. A second opinion may be less critical for early stage cancers that are easily treated than for complicated diagnoses. A second opinion should provide peace of mind that a proper diagnosis has been rendered and appropriate treatment options explored.

When seeking a second opinion, we advise people to consider consulting with a new team of physicians at a different health system. Once again, an NCI-designated center may be a great option if available in your area. Prior to arranging the second opinion, be certain that you have all of your medical records, including diagnostic imaging and other tests, readily available for the consulting physicians.

Discernment and Prayer

Once you have the requisite information about your condition and recommended treatment in-hand, it is time to think carefully about everything that you have heard. Use your caregiver, family, and friends as a sounding board as you work through the best options for you.  Once you have discerned the answer, you can put your foot gently back on the accelerator, and pray for a safe journey ahead.

All of these topics are covered in far greater detail in After You Hear It’s Cancer: A Guide to Navigating the Difficult Journey Ahead, available at