Rick Boulay, M.D., is a board-certified gynecologic oncologist. When cancer faced his family and his medical training left him ill-prepared to manage the day-to-day needs of cancer treatment and survivorship, he found wisdom, support and love in the patients he treated. As a result, Dr. Boulay, who is also a singer, now writes and performs on topics at the intersection of cancer and society.

Rick Boulay, M.D.

Personalized medicine (also termed “precision medicine”) is the tailoring of medical treatment to the individual characteristics of each patient.

Traditionally, cancer treatment progressed along the predictable pathways of surgery, radiation and chemotherapy, prompting my more emboldened patients to quip, “If you can’t cut it out, then burn it out. If neither of those work, then poison it.”

Although the oncologist in me gasps at these language choices, the humanist in me concedes its wisdom. After all, my five-hour commitment to either a surgical procedure or chemotherapy administration generally requires several weeks of medical care to manage the damage I’ve created. That is to say, in an effort to stomp each and every cancerous cell, my interventions initially leave folks worse off than when we first met. My tools are indiscriminant. They not only kill and injure cancer cells, but they harm the good ones too. It’s kind of a scorched earth policy. And to quote Dr. Susan Love, “Cancer treatment leaves collateral damage.” But cancer is cancer. And we need to be aggressive with an aggressive disease. Everybody wants to fight it.

Lets stop right there. These three statements are not generalizable truths. And the more we scientifically probe them, the more falsehoods we uncover.

All cancers are not the same. A cancer, by definition, has the capability to invade nearby normal tissue and spread, or metastasize, to distant organs, like lymph nodes, the liver or the lungs. But not all cancers behave like well-trained warriors, establishing a beachhead and poisoning the local drinking water. Some simply act as bad neighbors, hosting a noisy party well into the evening. Annoying, but not lethal. What accounts for the differences in behavior? Most cancers act in accordance with the DNA mutations, or the genetic changes, which accumulate within them.

Since sequencing the human genome in the year 2000, we now know that every human being inherits about 30,000 genes from each of his or her parents. These genes govern the way our bodies look and function: eye, hair and skin color, height, weight and proclivity toward certain diseases like high blood pressure, diabetes and cancer.

But every gene passed along by our parents isn’t always perfect. Just as your mom can pass along her brilliant sapphire eyes or curly red locks, she may also inadvertently donate her mutant BRCA1 gene with its 85 percent lifetime risk of breast cancer and a 42 percent lifetime risk of ovarian cancer. These are called “germline mutations,” and unfortunately, she does not get to choose which one you get. Additionally, even the perfect genes we are born with, can go bad, and become cancerous. These are called “somatic mutations.” Environmental exposures to a myriad of toxic agents can result in cancer development over time. For instance, the ultraviolet (UV) rays in sunlight damage skin cell DNA causing skin cancers including melanoma. Viral infections like Hepatitis B and C disrupt liver cell function and can result in liver cancer. Toxic chemicals called carcinogens found in everyday substances like cigarette smoke or alcohol or chemical cleaners change the DNA in the cells they poison. Surprise. They also can cause cancer. Even medications, like the hormones prescribed for menopausal symptoms cause breast and uterine cancers. And perhaps the most unkindliest cut of all, cancer treatments including radiation and some chemotherapeutics can ironically cause new cancers.

Just as the genetic injuries occur in many different ways, the resultant gene alterations manifest in many of the 30,000 genes we possess. And though our bodies can correct many of them, the mutations leading to cancer development generally affect genes regulating the machinery that controls cell growth by permanently turning these cells “on.” These cells then grow unchecked, compromising the orderliness of the neighborhood, disrupting the functioning of nearby organs and spreading unchecked across the body. Furthermore, these new mutations also make the affected cells a setup for further genetic errors making the cancerous cells even more aggressive. And finally cells, normally programmed to die off over time, lose that ability, making them immortal. They just keep on growing.

But what if there were some way to identify gene mutations causing the cell to behave as a cancer and then, with a medication, undo the effects of the errant gene? This is the basis of personalized medicine. Rather than killing each and every cancer cell (and occasionally the host), what if we could simply persuade them to behave? To act neighborly. To grow as necessary, function as intended, and die off when damaged. And never, ever trespass on territory that isn’t their own. In short, coax them to behave like normal cells.

Over the past few decades, scientists have identified many laboratory techniques that do just that: find evidence of the gene abnormalities which allow cancers cells to behave badly. Once the abnormal genes are identified, newer treatments can be invented to exploit these discoveries and treat the resultant cancer, rendering the cancerous cells harmless. Some, such as estrogen and progesterone receptors (ER/PR) in breast cancer have been utilized for years. Others, such as the Philadelphia chromosome in chronic myelogenous leukemia (CML), have been known for decades, but have only recently been made “actionable” (treatable with newer medications). While still others, like PD-1 and PD-L1 expressions, define effectivity of the exciting new immuno-oncology medications. Each month, in the medical journals delivered to my office articles on the recently elucidated mutant genes, their molecular pathways, and the newly developed medications to control them fill my required reading list. The excitement and hope generated from new treatment options with higher cancer control rates are, quite frankly, somewhat quenched by the realization that the medicine I have practiced to-date will need to be completely relearned. That is, of course, a small price to pay for the cancer control benefits of this era of the “Rapid Renaissance” in oncology. (i.e. “Locking yourself in a library a few times a year won’t kill you, Doctor. Not doing so may kill me.”)

But I think there is more to be said of personalized medicine. Genes and mutations and novel drugs mean nothing if inappropriately used. In fact, they can and will cause harm. In my mind, the most important caveat to personalized medicine is the one least often discussed: “How do you, as a cancer patient, desire to live out your days?”

This seemingly simple question quickly leads to others, more difficult, that will guide your consent to various treatments offered. Are the hardships of cancer treatment tolerable to you? Or would you just plain rather not, no matter what happens. What if available treatments can’t cure you but can control your cancer for some time? Five years? Or perhaps five months? Or five weeks? What if curing your cancer ruined something precious to you? Your hearing? Your vision? Your ability to walk? What if this little pill could control your cancer forever, and it didn’t make you sick, but it cost $150,000 per year? And what if insurance only covered a portion of it? What if it didn’t cover it at all?

These are the questions of personalized medicine. Getting to your values. Your goals. Getting to the heart of what is important and meaningful to you.

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What if there were some way to identify gene mutations causing the cell to behave as a cancer and then, with a medication, undo the effects of the errant gene? This is the basis of personalized medicine.

Cancer, Redefined: Personalized Medicine

: A previously unfamiliar or atypical situation that has become standard, usual, or expected (according to OxfordDictionaries.com)

“I never expected this — this whole cancer thing,” Jane told me toward the latter part of her prechemotherapy visit. “One day you’re fine. You’re working and doing your thing, you know? Then you get sick and someone tells you its cancer. It’s shocking! Your whole world turns upside down. Surgery and chemo. Doctors and nurses. I just wanna go back to the way it was before. I just want my old life back.”

Every other American man and one in three American women will be diagnosed with cancer during his or her lifetime. These statistics give credence to the impression that so many folks seem to carry a cancer diagnosis, especially the elderly, for whom cancer is most common. Presently, over 15 million Americans find themselves classified as survivors — each one shocked, stunned and horrified to be considered amongst the ranks; each one desirous of returning to a former life and lifestyle.

Cancer, defined biologically as an abnormal proliferation of atypical cells, generally involves less than a percent or two of the total body weight. Yet, this tiny biological intruder soon confronts everything we are and everything we hold dear. Bodily changes from the disease itself and subsequent treatment often affirm the stereotypical images that we associate with a cancer diagnosis: fatigue, baldness, surgical scars, pain, stomas, drainage tubes, nausea, Mediports and difficulty getting around. Subtler yet equally vexing are the social adaptations to our environment: depression, anxiety, fear, interactions with others, workplace issues and expectations of our future. Additionally, spiritual questioning and bargaining with (and occasionally cursing at) God or other higher powers often occur as folks wrestle with the meaning of their own existence.

Yet despite these intense challenges, survivors endure and often thrive.

So how can this be? How can you successfully navigate these treacherous times? Cancer survivorship requires transformation of the status quo. Cancer survivorship demands a new lifestyle, a new normal.

Fortunately, human beings come pre-equipped with resiliency and creativity and problem-solving skills aiding in the transition to the new normal. In fact, many of the changes occur organically and reflexively, without our specific attention paid to it. Surgical scars fade over time. Drainage tubes, wires and Mediports are removed when no longer necessary. Medications control nausea and pain. And hair almost always sprouts, though often curlier and wilder than before. Some changes remain long-lasting and require adaptation. Bowels may run while limbs limp. And a glimpse in the mirror may no longer jibe with the remembrances of our precancer bodies.

Though less visible, the psychosocial and spiritual changes can manifest in profound changes in behavior. Time, our most precious commodity and lamented as it slips away in early survivorship, becomes a gift generously shared with those who need it. The depression and anxiety of “Why me?” give way to “Why not me?” as we discover that we are no different from others along the cancer journey. We quickly learn to live in the “now” and allow the future to remain out of reach, beyond our ability to control it. And an apparent vengeful God reveals a merciful side. As my wife, a 10-year 

 survivor, describes herself, “I’ve become a new and improved version of me.”

The difficult but powerful lessons learned along the cancer journey define the wisdom of cancer survivorship. Each teaching, forged in the flame of adversity, challenges our perceptions of our bodies, our resilience, our courage, our universe and ourselves. Under such stressors, we must change. We must adapt. Everything about us is different. And there is no going back to before. Why would we go back to before, negating these hard-earned lessons of survivorship? We’ve established a new normal.

As every survivor experiences cancer and its treatment differently, each transition to the new normal varies. You’d expect those diagnosed with more aggressive cancers and prolonged, toxic treatments to struggle with their new normal. That is often but not always the case. Likewise, survivors with early-stage disease requiring less-aggressive interventions may get to their new normal relatively easily. But again, given the profound changes to self-identify as a cancer patient, even those with indolent disease may stumble. And although 70 percent of cancer survivors live at least five years after diagnosis, according to the American Cancer Society, some with very advanced or treatment resistant disease tragically do not live long enough to establish a new normal. Others, cured of their disease, live with significant limitations in quality of life. I stand in awe and admiration of those remarkably resilient individuals who, in the early part of their cancer journey, utter a sentence that begins “The blessing of my cancer is that …”

Jane’s comment on wishing to return to the life that she knew before cancer is, as you can imagine, quite common in early survivorship. As an oncologist, I never challenge it. It is real, and it is honest. But I often return to the concept later on in the cancer journey, after establishment of the new normal. Answers to simple questions like “How’s everything going?” cue me in to the survivor’s adaptation. When patients reveal thoughts that are not focused on the self, symptoms or disease, I know there has been growth toward the new normal. Topics of grandchildren, hobbies and work goals brighten my day. But when I hear of advocacy work or spiritual reckoning or a sentence that begins “I never ever thought I’d do this, but …” then my heart leaps. I know that profound inner work has accomplished the new normal.

At this moment, my thoughts on Jane’s comment reflect the beauty of the inner growth along the cancer journey. Cancer and its treatment are beastly. Period. They will strip you bare and leave you quaking. But as you recover, you will see the world anew. Platitudes become truths. Gratitude replaces fear. And although your body, mind and spirit will not work as they did prior to your diagnosis, they will be acceptable to you. You will make it so. As for turning the clock backward to the time before the struggle, that will not work. That cannot work, for you are no longer the same person. You have been tested and developed the skills of survivorship. You have earned your new normal.

“One day you’re fine. You’re working and doing your thing, you know? Then you get sick and someone tells you its cancer. It’s shocking! Your whole world turns upside down. Surgery and chemo. Doctors and nurses. I just wanna go back to the way it was before. I just want my old life back.”

Redefining Cancer: The "New Normal"

: To eliminate (a disease, condition, or injury) with medical treatment.

Second only to diagnosis itself, nothing in the lexicon of the cancer journey conjures more emotion and power than the word “cure.” Strangely enough, “cure” rarely appears in medical literature. Clinicians use this term when speaking with patients, not other doctors.

It’s not that we aren’t hopeful (OK … usually). And it’s not that we are noncommittal (now that’s a downright lie). It’s just that we’re … well… cautious and exacting. And we want our language to reflect what we truly believe. And “cure” is a really big commitment — one that cannot, must not be proven wrong over time. There is far too much pain and tragedy (and, frankly, embarrassment) when we are wrong in pronouncing a cure to someone whose disease subsequently recurs. Instead, doctors prefer “five-year survival” and “remission” as more accurate terms in describing the condition where testing finds no further cancer in response to treatment.

As my colleague says, “The crystal ball’s a little cloudy.”

Upon completion of treatment, one of only two scenarios exists. Either all cancer cells are annihilated by surgery, chemo or radiation, never to return, or some of the little cells escaped and plan to mount a future counteroffensive. The trouble is that technical limitations thwart our ability to measure small volumes of cancer cells. Blood work, imaging like PET scans and CT scans, and physical exams are simply too crude at present to predict, always and accurately, whether cancer will recur. And so, as with Schrödinger’s cat experiment, a quiet cat placed in an opaque box is assumed to be both alive and dead at the same time. You just don’t know. Likewise, cancer cells after treatment are assumed dead, but we go on testing to discover any signs that the disease may have returned — CT scans, blood work, physical exams, ad nauseam. Only time will tell.

This we do know: Others previously endured your disease, at your stage and with your treatment. And we’ve recorded how they did: responses to treatment, how long the disease stayed away and if people lived or died. In fact, depending on which disease’s commonality, we may have lots of data to predict what we can expect. Therefore, we build a statistical model of what you can expect from your disease and its treatment. Called “survival curves” or Kaplan-Meier curves, these graphic representations plot the percentage of folks alive on the y-axis and time, in months, on the x-axis.

Using a graph, we can predict a patient’s percent chance of being alive at any point in time after treatment.

Ready to take it up a notch? For the advanced beginners, we can then plot several curves, each representing a different stage of the same cancer on the same graph. We get more information from one graph but increase the complexity of what we are looking at.

A couple of caveats here: First, we generally observe patients for five years. After that point, for most diseases, the curves are flat, meaning that we anticipate few further cancer deaths. Thus, the doctor’s five-year survival is equivalent to a layperson’s “cure.” So when docs uncomfortably utter the word “cure,” it’s usually after five years from diagnosis. At that time, we generally feel confident that the disease is gone. Secondly, these are dry, boring statistical models. So we know where the group will plot out. Each individual patient, however, that’s another story.

Early on, we don’t know with any certainty who will be cured. That’s where the term “remission” comes in: when there’s no sign of any cancer, but it is still too early to tell. When the clock strikes 12 on the fifth anniversary of your diagnosis, voila — “remission” magically transforms to “cure.” Sort of like a reverse Cinderella moment.

And thirdly, and perhaps most importantly in a time of rapidly evolving treatments, all published data are at least five years out of date because you have to wait that long to collect the data following the treatment performed. Treatment options change a lot during five years.

Finally, outliers exist. Unfortunately, patients with early stage disease can recur and die, and those with late-stage disease can outlive their predicted expiration date. My patient Lisa fits into the latter category. Lisa would occasionally end up in the hospital for bowel obstruction treatment when her home remedy of Dilaudid and a six-pack (not medically recommended) failed. Although we could say that Lisa found this a nuisance, she preferred the description “It just pisses me off.” Once, during a hospitalization, Lisa, her nasogastric tube, her IV pole and her angst rode the elevator down to the lobby for a walk outside to have a smoke (again, not medically recommended). A gray-haired attending physician in his crisp white lab coat, followed by a bevy of dutiful medical students, joined them for the ride.

Gesturing toward her cigarette pack and lighter balanced on the IV pole, Dr. Attending lectured, “You know, you should really give up that habit. It’ll give you cancer.” Unwittingly, he challenged a worthy adversary.

“I’ve lived for 10 years with stage 4 ovarian cancer. You think smoking’s gonna make it worse?! I don’t need you to tell me how to live my life,” she growled, standing her ground in a crowded, slowly moving elevator. There were some choice words mixed in there, too.

The elevator relented, opening its doors, and Dr. Attending and his ducklings and the awkwardness fled, leaving a cloud of smoke à la Wile E. Coyote. When Lisa recounts this story, she remarks that she didn’t think they got out on their anticipated floor. They just retreated to safety.

Whether we choose powerful language like “cure” or the clinically expedient “remission and five-year survival,” the concept remains the same: surviving cancer to live a full and meaningful life. The trouble is, at the beginning of the cancer journey, nobody knows fully what to expect. The crystal ball is indeed cloudy. That leaves the cancer survivor with two options: Live life as though you are cured, or live life as though you are dying. But perhaps a better analogy can be drawn from Schroedinger’s cat: Live life as though you are both cured and dying at the same time.

Live life as though you are cured. Be joyful. Plan events. Live gratefully. Share friendships. Tend to others. And live as though you are dying. Be thoughtful. Plan a legacy. Live humbly. Share memories. Tend to your own needs. And in this new normal of life after cancer, where little is taken for granted, meaningful coexistence between the planes of cure and dying defines our best living.

A blog series of words and terms common to the cancer journey by Rick Boulay M.D.  

Redefining Cancer: "Cure"

sur•vi•vor (s&#601;r&#712;v&#299;v&#601;r/) noun : A person who is able to live their life despite experiencing difficulties.

“I can’t wait to get through my cancer treatment so I can go on living my life. I want to be a survivor,” said my patient with a newly diagnosed ovarian cancer.

You are a survivor, my dear. You already are.

Cancer survivorship begins at diagnosis. The commonly accepted definition of “survivor” within the cancer community is simply a person diagnosed with cancer. So once the terrifying sentence, “I’m so sorry, the biopsy shows that you have cancer,” leaves your doctor’s lips and pierces your soul, you begin life anew as a cancer survivor. And although nothing actually changed, everything changes.

The notion then, that disease outcome (whether you live or die) determines if you are a survivor is therefore erroneous. The accepted definition presupposes no end result of the diagnosis. So if you choose treatment for a curable or controllable cancer or reject therapy for any reason, you remain a survivor until separation of body and spirit. Resultantly, survivors experience their journeys uniquely. Folks enduring harsh surgical, chemotherapeutic or radiation therapies for aggressive disease often feel an increased urgency compared to those offered “watchful waiting” for more indolent (non-life threatening) cancers. However, a sense of mortality, or even an existential crisis, commonly hijacks all cancer survivors, regardless of the anticipated outcome of their disease.

Life after diagnosis (AD) feels completely different to that before cancer (BC). Time in survivorship, often viewed through a lens of palpable mortality, assumes new meaning and increased value — a preciousness of days often reserved for the birth of a child, and a sense that each passing minute holds wonder and mystery to be cherished. And with it, a burden to find and capture and distill the value of each moment.

This newly felt sense of urgency can manifest in a couple of different ways. Survivors describe time wasted akin to a mortal sin. My wife, a leukemia survivor, laments waiting in the grocery store checkout while screaming in her head “Here I am, dying of leukemia, and you’re holding up the line looking for exact change? C’mon lady, I got some living to do.”

Alternatively, as a cancer physician and caregiver, I found meaning and beauty where I never had before. One night, after catching a particularly beautiful sunset, bike-riding home from work, I grabbed my daughter from her highchair and took her outside to share it. Holding her closely in my arms I whispered, “ Look, God painted the sky for us.” She looked at me and said, “Dad. It’s really cold. Can we go inside?” I must conclude that urgency and beauty and time are relative experiences where value is perceived differently by all involved. But I am very certain that survivorship intensifies life’s colors.

Survivorship is not static. It is my theory, not yet supported by data, that survivors traverse a predictable pattern of timeline and milestones. The first phase “shock and awe” commences at diagnosis and carries through the first year or two AD. This period is characterized by chaos and turmoil of mind, body and spirit resulting from cancer and its treatment. The next phase, “finding the new normal” in years one to three AD, encompasses healing, recovery and acceptance of those changes brought on by cancer and its treatment. Shortly thereafter, the “advocacy” phase begins, in years three to five AD, as activities of giving back to the cancer community through mentoring, raising awareness and fundraising. Generally, after year five AD, folks “move on” allowing cancer to take a back seat to more traditionally activities of life thus appearing more like the lifestyle in the time BC. This timeline can be disrupted by recurrences and other traumatic cancer-related events including cancer or treatment-related death. It may also accelerate in particularly resilient individuals.

The term “survivor,” accepted by the medical community and most others along the cancer journey, leaves many cold. Some prefer more descriptive and colorful monikers avoiding the bland, vanilla-like nature inherent in the word “survivor.” For instance, some refer to themselves as ”cancer thrivers,” demonstrating that cancer has not limited them in any way. A quick run down of twitter handles such as @WomanofTeal, @BreastAdvocate. @LivingBeyondBC, @AliveandKicknDD, @CancerConnector and @GBM_WARRIOR can give you a sense of some folks’ preferred titles. Although no single word is universally accepted, negative terminology such as “victim” should be avoided.

Presently, over 15 million cancer survivors live in the United States. And due to earlier detection and better treatment, this number is projected, by the American Cancer Society, to grow to 20 million by 2026. That’s a lot of people. A lot of people sharing a similar story of fear, courage and resiliency. A lot of survivors. Survivors who may not all agree on a single name to describe themselves, but share consensus that each precious and vibrant minute of life is to be cherished.

Next in our series “Cancer, Redefined” we will explore the surprisingly often misunderstood word, “cure.”

The notion then, that disease outcome (whether you live or die) determines if you are a survivor is therefore erroneous.

Rick Boulay, M.D.

Cancer, Redefined: Personalized Medicine

Redefining Cancer: The "New Normal"

Redefining Cancer: "Cure"

Cancer, Redefined: Survivor

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