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Cancer, Redefined

Catherine Boulay Foundation Learn About Cancer

“Before we start, when you talk to us about how you plan to take care of my wife’s cancer, make sure that you use language and terms we all understand,” said every husband of every patient I have ever treated.

After completing my undergraduate college degree in biochemistry/molecular genetics with minors in chemistry and psychology, I began medical school: a four-year accelerated program that was a roller coaster ride in human biology and disease. Prior to med school, I had taken exactly one biology class, and that was in high school. Despite biology, anatomy and physiology having not changed too much in the prior seven years, I still had a lot of catching up to do. I spent the first two years of medical school seated in front of a book, 12 hours a day, with chest pain. There was much to learn and I wasn’t so sure I was up to the challenge. My daughter, on the other hand, a current third year in medical school, has a different experience. “It’s not that the concepts are difficult. It’s just that there is so much of it, so fast.” But, she was a Biology major in college. And the high school valedictorian. I was neither. And for that matter, neither are most people.

For me, the language of medicine was most daunting. Super-long, complex, compound words filled each of the 700 pages in each of my books. It may as well have been Latin or Greek for all that I could decipher. In fact, much of it was. And in the beginning of each new course, there was more new language. With time, my trained brain sorted this alphabet soup and word salad into digestible patterns of information. I began to instinctively dissect these previously unintelligible phrases into manageable chunks that made sense. “Hepatobiliary adenocarcinoma”, initially read as hepato-what of the adeno-who but now immediately translates as “a liver or bile duct glandular cancer.” I began to understand and use the language in which doctors communicate. A language that I call “Medicalese.” Although initially cumbersome, Medicalese proved to have advantages over regular English, or “Human” as I now call it. Medicalese was far more precise. For instance, in “Human” I had an arm bone. In “Medicalese”, my radius, ulna or humerus provided the skeletal support of my upper extremity. Furthermore, each bone had terms that described the sections (ramus, epiphasis, intrarticular portion), the joints (ball and socket, symphasis) and the functions (structural, calcium sink and marrow production of cellular components of blood). And now, as Medicalese is my primary language, if you were to tell me that you busted your arm, I would have no fricken idea what you meant.

My primary job as an oncologist is to create a cancer treatment plan that meets the goals and values of each patient. Success requires me to be bilingual. I must be fluent in Medicalese to understand cancer: the disease, its treatment options, its prognosis and future expectations of the disease and its treatment. I must also understand the nuances of Human to understand my patient: her goals, that which she is willing or unwilling to tolerate, her values, her culture, her religious beliefs, her strengths, her limitations. Subsequently, in discussions with a patient, I constantly find myself mentally translating, back and forth, between Human and Medicalese. I often feel like I work for the U.N. with two languages scrolling simultaneously through my brain. Occasionally, during a patient conversation when word searching for an appropriate English phrase, I’ll close my eyes and search the memory banks saying, “In Medicalese we call it ‘proprioception.’ I’m trying to think of the Human word for it.”

Conversations with other clinicians, on the other hand, are precise and efficient. Sure, the words can be humongous, but their meanings are exacting. And when the terms get too long, we abbreviate. All doctors know that a GBM is a glioblastoma multiforme, the brain tumor that Senator McCain was recently diagnosed. Furthermore, these three letters not only identify the specific cancer, they telegraph its prognosis and treatment as well as anticipated side effects and complications. That’s a lot of information from three letters. This is the benefit of Medicalese. And according to W. Edwards Deming, as each system is perfectly designed to get the results that it gets, doctors often fall back into their efficient, primary language whether or not the intended audience is fluent in Medicalese. For us, it’s a language of convenience. For patients, gobbledygook.

Expecting our patients to comprehend Medicalese is both unfair and unwise. Yet in our haste, and for the sake of brevity and efficiency, we occasionally slip up. Patients, caught in the vulnerability of their disease, feel uncomfortable asking for clarification. The result is a noncommunication on the most important issue of their lives: their disease and its treatment. This scenario plays out every day to every doctor and every patient. And as a result, people make bad decisions regarding their health. Sometimes, really bad decisions. After all, this is not like getting the car fixed. The mechanic examines my car, reports to me in effusive language, and all I hear is that my car needs a new set of balls and has some sort of disharmony going on. He fixes it. I give him my credit card. Done.

Medicine, especially cancer and its treatment, is not only very complex, it is also rapidly changing. Making the right treatment decision for you requires an understanding of a vague and foreign landscape replete with enormous words, pretty charts and graphs, crazy biostatistics, novel concepts, new discoveries and an ever-growing list of nonpronounceable drugs. Understanding this landscape is the key to managing your disease. As we docs are not always reliable in conversing in Human, Cure Magazine has allowed me the honor of presenting a new blog series, “Cancer, redefined” to better define some of the newer cancer concepts, treatment philosophies, and options in the current climate of personalized medicine. I hope that you find this series both enjoyable and informative. We begin next time with the word “survivor.”

This article was recently published on cure.

The Peer-to-Peer Consultation: you are not my peer.

Catherine Boulay Foundation: The Peer-to-Peer Consultation

I am a GYN Oncologist. I work in the high stakes realm of cancer care. I strategize complex treatment plans involving surgery, radiation, chemotherapy and the newer biological agents to treat the myriad of disease that we call collectively “cancer”. Cure, or at least control, requires urgent and timely administration of these modalities along with various imaging or blood work to assure that the treatment prescribed is effective. I love my job as each day; I am privy to observing the resiliency and grace from those of whom I am fortunate enough to care. Oncology remains a profoundly rewarding profession.

But the care I provide comes at a cost. In addition to the human toll the prescribed therapy takes out of the patient and her family, there is, of course, a financial burden. Chemotherapy can cost tens of thousands of dollars per month and imaging, such as a PET scan can cost upwards of five thousand dollars per test. In efforts to control cost, insurance companies have implemented numerous policies to reduce the number of what they consider to be “nonindicated” tests. My favorite (yes, I’m being facetious) is the peer-to-peer consultation.

Most patients are unaware of this, but your physician is likely your biggest advocate when it comes to getting your care covered. At least weekly, and occasionally daily, insurance companies deny payment for some cancer treatment that I prescribe. In my career, I cannot think of a single aspect of the cancer care continuum that HASN’T been denied: surgery, chemotherapy (I once had to cancel a patient’s scheduled chemotherapy which was both effective and well tolerated, 3 months into treatment due to an insurance company refusing to pay for more treatment. They also wanted their money back for the three previous treatments. In the end, they covered the service), consultations to other medical professionals such as Genetics and physical therapy, medications to cover chemo induced nausea, imaging such as CT scans and PET scans, oh and this is a good one – back billing of a patient’s estate for the three grand after she died, for a test to see if the chemo would be effective. It was not.). As expected, as the cost is so high, denial of payment equates to a denial of service. After a series of denials and re-requests (which can delay treatment for weeks), the final step in the process of getting the service paid for is the “peer to peer consultation”.

In the peer to peer consultation, Peer 1 (that sounds too much like a store so let’s say) Peer A, the insurance company physician, almost never trained in oncology and Peer B (i.e. me) discuss, by phone, the medical scenario of the patient and why she is in need of the previously denied, prescribed service. It may go something like this (in fact this one happened last month):

Peer A – Insurance Doc: (matter of factly) “I’ve reviewed your patient’s case and see that you would like the denial of services for her PET scan overturned. Is that right?”

Peer B – me: (pleasant, business casual) “Yes that’s right. Let me tell you her story.”

Peer A – Insurance Doc: “Sure.”

Peer B – me: “This patient has a history of recurrent metastatic cervical cancer. She is presently in remission. She was initially treated for stage Ib squamous cell carcinoma with radical surgery. She recurred in the pelvic a year later and was treated with concurrent chemoradiation therapy and was in remission for another year. A PET scan then found two lung lesions. These were NOT seen on a CT scan prior to that. These lung lesions were removed surgically and she’s been in remission for the past year. I would like to do a PET scan to make sure no small recurrence is present as she is at such high risk having recurred twice already.”

Peer A – Insurance Doc: “You said she’s in remission, so there’s no need for a PET scan.”

Peer B – me: “Her CT from three months ago was normal, but as I mentioned, in the past her CT was falsely negative and her recurrence was only identified on a PET scan, giving us time to effectively treat her and get her back into remission.”

Peer A – Insurance Doc: “Let me check the policy… Wait, do you know if PET scans are approved for cervical cancer.”

Peer B – me (now annoyed): “Yes, PET scans are approved for cervical cancer and may have saved the woman’s life. What is your specialty training?”

Peer A – Insurance Doc (now annoyed): “I’m board certified in Family Medicine. Oh, here it is. The policy states that if the CT is positive, then the PET will be covered. So I’ll approve a CT scan.”

Peer B – me (trying to maintain composure): “I’m board certified in GYN Oncology. And in oncology school we review the data to determine the most effective treatment and follow up. Clearly, CT scanning is suboptimal in this patient. She really needs a PET scan.”

In the end, the PET scan was denied. I couldn’t convince Insurance Doc by scientific reasoning or rational argument, that his circular logic was faulty and the patient may pay with her life for Insurance Doc’s inability to look beyond policy. Her CT was approved, performed and was normal for whatever solace that gives us.

I have been doing peer-to-peer consultations for at least five years now. In the past, a discussion of the clinical scenario and available patient data would not infrequently overturn the denial. Not so much now. My approach of educating the insurance physician reviewer to present oncology standard hasn’t changed, but is now rarely successful. My tone may have degenerated a bit over time as the frustration of getting care covered has increased. And I wonder aloud, didn’t we have the same degree? Didn’t we have the same training? Didn’t we have the same idealistic view of changing the world one patient at a time? Didn’t we take the same oath that began primum non nocere – first do no harm? So when did our paths diverge? Our values and goals to provide our patients with the utmost in cutting edge and compassionate care, once the same, have strayed. And although it may have been so in the past, presently I must conclude: Insurance Doc, you are not my peer.

This article was recently published on KevinMD.com.

Trust

Catherine Boulay Foundation: Trust

“I love a happy ending,” Mary Clancey said as we completed our interview documenting the surgical removal of her 140-pound ovarian cancer. It is, however, the beginning of our story, the development of a trusting doctor-patient relationship, that I find fascinating. As her lead surgeon, I met Mary a mere 4 days before the big event. She told me from the very beginning that I was the man for her. She was confident that I could get her well. And I still wonder, “Why?”

After a visit to the emergency department because she could no longer walk, Mary underwent a CT scan revealing the enormity of her problem. She was then transferred 60 miles to our facility for care. I saw the scan before I saw Mary, but it did not prepare me for the physical ravages of a body under tremendous duress. She lay recumbent on her left side, the only position she could tolerate. Her left leg swelled nearly three fold due to a blood clot within her veins. She whispered and took shallow breaths as the mass compressed her diaphragm. She could barely eat and general activities of daily living (toileting and bathing) were nearly impossible. In staunch contrast to her compromised physical state, her mind and spirit remained focused, resilient, and above all, charming. She could no longer live like this. She wanted and needed surgery to reclaim her life.

Though Mary and I discussed options, she really only had one: an aggressive and life-threatening surgery often performed, but rarely on a tumor this big. So her recovery would be difficult to predict. How would her body respond to losing half its weight in a few hours? Would she be able to breathe or need a ventilator? Would her heart function better or worse no longer perfusing the 140 pounds of resected tissue? Would the blood clot break loose stopping her heart? Would her likely cancer need further treatment? Though we could not know the answers to these questions, Mary signed the “informed consent” document stating that she understood the goals, risks and benefits of the proposed surgery. How could she understand when we didn’t? Yet, she trusted.

My ultimate goal was to remove the cancerous mass safely and intact. Preoperative assessments by colleagues were required: cardiology to evaluate heart reserve, radiology to place a venous filter to catch any wayward clot, plastic and general surgery to repair her distorted abdominal wall and anesthesiology to assess the intricacies of putting Mary to sleep. Each intervention carried risk. And each required a separate informed consent document, one paragraph describing the procedure followed by two pages of potential resultant harms. Throughout this four-day process, Mary remained jovial and expectant of a full recovery. When I told her, that we would need to remove her umbilicus (“for my belly button collection,” I said), she had her son bring me a mason jar of belly button-like chocolates.

At surgery, we fastened two operating room tables together, one for her, the other for the mass. Once asleep, we placed Mary on her side. This position put less stress on her heart and lungs while facilitating removal of the mass. After incision, the huge blood vessels supplying the ovarian mass (inconveniently located behind it) were cut, tied and burned. I wasn’t taking any chances. The mass itself was then detached from nearby structures and simply rolled out onto a waiting sterile cart.

Our pathology colleagues weighed and examined portions of the specimen and determined it to be malignant. We repositioned Mary onto her back and completed the cancer staging operation. Our plastics and general surgery team then repaired her abdominal wall, removing a further 40 pounds of redundant skin. The success of the 5 hour procedure resulted from equal parts training, MacGyverism and luck.

After completion, we transferred Mary to the ICU where she recovered under the watchful eye of the intensivists. For ten days she required a ventilator, as her diaphragm muscle could no longer breathe on its own. Yet despite a breathing tube, Mary remained optimistic and met each goal. She joked via touch screen that she could once again see her ankles. And she walked. For the first time in weeks, still attached to a ventilator, she walked. And she trusted, but why? There are many answers, though none, in my estimation, explain why people put their lives in my hands every day. I asked Mary several weeks postoperatively why she consented. Her response was definitive. “You made me feel comfortable. I just knew you could do it.”

As the guy who consults Consumer Reports for anything over 100 bucks, I found this answer unsatisfying. I wanted something more quantifiable.

Everyday, I ask patients to trust me with their lives. And everyday, with little hesitation, they comply. And I still wonder how this happens. Do my graying temples and quiet confidence telegraph technical proficiency? Am I riding the coattails of the trust of the doctors who referred these patients to me? Is there some institutional aura glowing behind me? Or in these urgent circumstances, any port in a storm will do. But perhaps there is something more.

I think the doctor-patient relationship is a sacred space. It defies definition or measurement. And in this space I am my best self. The idealized version of me. Judgment, preconception and blame are left outside the door. There is no room for that here. In this intimate space, honesty, transparency and mutual respect quickly form the basis for deep and trusting relationship like no other.

It is here we discuss your abortion, your sexual orientation, your son’s suicide, your mother’s cancer and the stressors of your difficult job and tremendous family pressures in a confidential and healing manner. It is here that I will share the meaningful and private aspects of my life relevant to your journey. Things I rarely talk about outside this relationship. We will converse on the hopes and expectations you have of your unborn baby. And when no more can be done for your illness and death is nye, we will decide how best to manage your last few days weeks on this earth with quality of life, as you define it, being our only goal.

It is in this space where I can say “I love you” out of deep respect for who you are and the grace with which you’ve carried yourself throughout your illness. So, when we make the decision for a life changing and death defying surgery, it is simply an extension of this powerful relationship. A faith that within the doctor-patient relationship, we bring our best selves each time. That together we will preserve your health. Mary and I do. We trust.

This article was recently published on cure.

Close to Home Concert

Catherine Boulay Foundation Close to Home: Songs and Lessons of Cancer Survivorship Concert

Songs and Lessons of Cancer Survivorship
Performed by Rick Boulay, MD

Miller Symphony Hall
Allentown, PA

Saturday, April 29th • 7 pm | Buy tickets!
Sunday, April 30th • 3 pm | Buy tickets!

Donation $25
Join us for cocktails 30 minutes before performances.

For tickets, visit allentownsymphony.org or call (610) 432-6715!

The Power of a Word

Catherine Boulay Foundation: The Power of a Word

She had known many losses over her forty years.

Her husband died several years ago. She lived in a car. Her eight children were under the protective care of her sister-in-law. After her recent diagnosis of cervical cancer made at a local emergency department, she required a four-week psychiatric admission for depression. Recently discharged, she was admitted under my care for treatment of her cervical cancer.

“I can feel a mass on your cervix,” I began. “The CT scan and my exam show that mass to be only in the cervix. That’s good news. This is curable, but will take some work to get there. First, I’ll have to find the results of the biopsy done in the ER last month.”

My words were met with hollow eyes and a vacant stare.

“What are you most afraid of?” I continued.

A whisper followed a long pause. “My kids,” she replied, barely audibly.

Her response was only a partial answer, the subject of a longer sentence. A thought, which when completed, sounded more like “My kids… after I die. How will they get on?” After all, there was really only one thing she had left to lose.

Although much has been researched, explored and written on the subject of cancer, its prevention and treatment; relatively little is understood about cancer survivorship; the way our minds and bodies cope with and react to cancer diagnosis. For instance, the American Cancer Society Annual Report 2016, describing the most up to date information of cancer facts and figures, reports that 92% of cervix cancer patients with local disease are cured. And due to effective prevention with HPV vaccine, smoking cessation and effective screening with pap smears, the risk of dying from this disease continues to decrease every year. Women with advanced disease are living longer due to recent interventions with newer active biological agents.

However, despite the increased cure rates, relatively little is understood of the long term consequences of cancer and its treatment for the two thirds of people diagnosed, who can expect to live at least five years. From Cancer Patient to Cancer Survivor: Lost in Transition describes several goals of survivorship care, all of which are geared toward general biological functioning and prevention of future cancers. And although understanding the psychosocial burdens of cancer (i.e. the day to day consequences of a cancer diagnosis) is advocated by major national cancer treatment societies, research into their understanding has been largely left to nongovernmental organizations such as Livestrong.

Cancer does not only affect an organ or a body. Cancer affects people and the society in which they live. Cancer affects the way we think about others and ourselves. Cancer affects the way we behave and interact. In short, a cancer diagnosis changes everything. As people are living better and longer after a cancer diagnosis, it is now time to understand how cancer changes our day-to-day behaviors, our interactions, our fears and hopes, our work and family lives, our finances, and our societal biases. It is time to understand how this one word can change everything.

I never found the result of the biopsy that proved her cervical cancer diagnosis. Instead, as her treating oncologist, I would need to perform the biopsy myself. Reexamination clearly showed a golf ball sized mass protruding through the cervix. A 30 second office procedure removed the mass. The pathology report proved this to be noncancerous.

She will quickly recover from the procedure. But it may take a lifetime to recover emotionally from the burden and trauma of a four-week misdiagnosis of cancer. A word so feared that merely assigning it could render us nonfunctional.

This article was recently published on Thrive Global.