Friday, March 18, 2016

Dignifying life: care delivery in an oncology ward in rural Rwanda


Susan’s Special Needs, a specialty retailer dedicated to servicing the needs of women undergoing cancer treatment has an ongoing donation initiative seeking mastectomy bras and breast forms for breast cancer patients at the Butaro Cancer Center for Excellence (BCCOE) in Rwanda, Africa.


Following an overwhelming response to recent breast prostheses donations, Susan’s Special Needs and Partners in Health have come together to collect product donations for the women undergoing treatment at BCCOE – small, yet simple solutions to help patients cope with their experiences and transition following breast cancer treatment.


Dignifying life: care delivery in an oncology ward in rural Rwanda

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Dr Paul Park (© Calvin Kennell-Heiling)
I can still hear his cry echoing through the entire ward.
“Clarisse, when was the last time we gave him morphine?” I pressed the nurse. “Less than 30 minutes ago,” she replied.  “Give him another dose anyway.”  Jean Paul was 11 years old and had a facial cancer compressing the entirety of the right side of his face as well as part of the left.  His right eye was pushed outwards to the point of being dislodged out of his eye socket and no longer functional.  His throat was squeezed such that he could barely swallow or speak.  Worse of all however, was the excruciating physical pain inflicted by the tumor.    The mass was compressing thousands of neurons triggering constant pain. He was a bedbound child with little reason to laugh or smile, not that he could with his face engulfed by the mass.  The mere thought of him would immediately trigger a scarring visual, auditory, and emotional recollection.  And if I had a moment to clear my mind while gazing across the beautiful landscape of Butaro, then he quickly reminded me of his reality as I could hear that agonizing scream even from outside the hospital walls. 
“This would never have happened in the US.” That was my initial thought when I first met Jean Paul.  He was Rwandan, and I was working at Butaro District Hospital in rural Rwanda.  The Rwandan Ministry of Health had constructed a state of the art hospital in the rural highlands of northern Rwanda through a collaboration with the non-profit organization, Partners In Health (PIH).  The stunning architecture is only surpassed by the natural beauty of the surrounding landscape.  The breathtaking views epitomized the country’s reputation as the “land of a thousand hills.”  Every morning at the hospital, I could breathe in the brisk cool air and appreciate the rolling green hills with a glistening lake in the distance, just bordering Uganda.  Unfortunately, the majestic natural environment was a stark contrast to the realities of the challenges faced in the oncology ward. 
Butaro District Hospital opened the country’s first dedicated cancer ward to become the national referral center for oncology care.  Before the Butaro cancer ward, limited chemotherapy medications were available in-country and were too expensive for most.  The fortunate few who received government sponsorship would travel outside the country to receive life-saving treatment.  Thus, Butaro Hospital was a true game changer.  Now, cancer patients could receive life-saving chemotherapy at no cost, and PIH also fully subsidized referrals for diagnostic and staging studies, surgery, and radiotherapy.  After registering over 500 patients into the cancer program in its first six months in 2012, word quickly spread to patients who previously had no accessible treatment options, and this number more than tripled in 2013.  The oncology program today has registered over 4,000 patients.  I joined the Butaro Hospital staff in the midst of this massive influx in 2013, and could immediately see that we had been caught off-guard.  The 24-bed oncology ward became a crammed, loud 40-bed ward and it was not uncommon to have two patients per bed.  With limited staff, rounding on all the patients could take the entire day with the last patients receiving their chemotherapy courtesy of the night-shift nurses.  The clinics would run well-past sunset with many patients having to be seen the following day.  During the rainy season, the heavy downpour would pound against the tin roof in the congested ward with people crying for help making it nearly impossible to hear oneself talk nonetheless think.  However, beyond the high patient volume, the biggest obstacle was the late stage presentation of patients.  This factor was completely unlike my exposure to oncology in the US, and explains much of the gap which determines if the patient can be cured or just palliated.  
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Click to zoom
In the US, the medical culture of routine well-child visits, annual check-ups, public health awareness campaigns, in addition to advanced diagnostic technology allow for early detection of a myriad of diseases.  For cancer, the disease stage reflects how advanced or spread the cancer cells are throughout the body.  As the stage progresses, the chances of successful curative treatment diminish.  Unfortunately, low and middle income countries (LMICs), where cancer kills approximately 12 million people annually, consistently have higher stages at initial presentation.  For example, in the US an estimated 13% of breast cancer patients present at an advanced stage.  However, at Butaro Hospital, that figure is over 60%.  Globally, LMICs have a 75% mortality rate among cancer patients in comparison to 46% in high income countries.  This reality means that most patients at Butaro Hospital will not qualify to start curative therapy and will be immediately started on palliative treatment.  In cases of hematologic cancers or “blood cancers” such as leukemia, late stage presentation could mean low blood counts so severe that any chemotherapy treatment would likely kill the patient.  Too often we had to decide between treating the patient with a potentially lifesaving drug versus focusing on comfort care only due to the toxicity which that same drug imposed.  I became accustomed to telling parents shortly after their arrival to the hospital that there was nothing for us to do for their child, but that we would make him or her as comfortable as possible.  After arriving to the hospital with such hope, in less than 12 hours the parents were with our social workers arranging payments for transportation of the deceased.
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Late stage presentation in LMICs cannot be simplified to mere patient ignorance or “poor choice.”  The cost of clinic fees or transportation alone may preclude an individual from seeking care.  Furthermore, why would someone take time away from work to pay for a bus and clinic consultation fees if he or she cannot afford the tests or medications?  Thus for cancer, it is not uncommon for patients to wait until the pain or unsightliness of the tumor becomes so severe that they give in to the financial burden and present to clinic out of desperation.  I recall one day when I was working in the oncology clinic, two consecutive patients presented with large, necrotic, malodorous facial masses. I asked each of them how long they had had the mass.  Both replied, “10 years.”
Upon seeing Jean Paul, I feared the same story of late stage presentation with the same painful outcome.  We performed a biopsy and waited for the result.  Due to limited services in Rwanda, the pathology department of Brigham & Women’s Hospital (BWH) in Boston generously supports our work by providing remote services via telepathology.  However, telepathology services were not yet available in 2013, so at that time we would ship all of our specimens to Boston for review.  This process would typically take up to 6 weeks.  Sending the patient home to wait was not an option given his severe pain and lack of appropriate oral pain medications.  His only relief was intravenous morphine.  During his first few weeks of the waiting period, his mother would hold a bottle of soda for him to sip on through a straw.  Food was too bulky and painful to swallow.  However, as we waited for the pathology result, I noted that each day even the swallowing of liquids became more and more painful.  With no oncologists at Butaro Hospital, we significantly rely on the technical expertise provided by Dana-Farber Cancer Institute (DFCI) in Boston.  DFCI and other partnerships such as that of BWH have been absolutely critical to the Butaro cancer program from the start with not only technical expertise and clinical service, but also staffing, educational, research and financial provisions.  As such, we repeatedly discussed by phone and email with oncologists at DFCI our potential treatment options without having a diagnosis.  After receiving preliminary results that the mass was a cancer but which was not yet fully determined, we ultimately decided to provide a trial of a chemotherapeutic drug that could potentially provide relief for some of the cancers which we suspected could be most likely.   In the US, cancer treatment is typically not treated until a clear diagnosis is available.  However, we made this decision, because the alternative of doing nothing and watching him die in pain was not acceptable.  He deserved a chance to fight.  
A new chapter of my visual, auditory, and emotional recollection of Jean Paul emerged.  First, I noticed that he stopped asking for morphine as frequently.  Then the mass began visibly shrinking.  Next, he could eat; then, sit up; and finally, stand.  After living in the cancer ward for over 2 months, for the first time he could walk outside on his own and put his feet in the grass and feel the brisk air against his face.  The most memorable moment was his smile.  Despite the mass encompassing the majority of his face, I could finally see that corner of the left side of his mouth curl up.  Each morning that I rounded on him, he would smile and give me a high-five.  On some nights, my colleagues and I would return to the ward just to play soccer with him simply because it was now possible.  His cries of pain were completely replaced by laughter. He quickly became the ward’s symbol of hope amidst long days of emotionally tasking work.  Jean Paul could now do what he was supposed to do: laugh, smile and be a kid.  The pathologic diagnosis was still not clear, but at least we had bought him some time to continue our investigations.
Access to essential medicines in low-income countries is a critical challenge.  The World Health Organization (WHO) Essential Medicines List (EML) comprises the bare minimum pharmaceutical needs for a basic healthcare system.  It serves as a launching point of recognition and advocacy for accessing these essential medicines globally.  Since my arrival to Rwanda, oral morphine has become available in the public sector after being added to the national EML.  However, further clinical training in its increased and proper use for palliative pain control is still needed. This past August, PIH and others successfully advocated for the addition of 16 cancer drugs to the WHO EML.  While this list contains several key cancer drugs that are patented and thusly expensive, there are also generic cancer drugs, including cyclophosphamide, the medication which Jean Paul received.  Cyclophosphamide was discovered in 1954 and is typically given in combination with four other drugs as first line treatment of non-Hodgkin lymphoma.  Despite its longevity and critical value, this single generic drug can cost PIH up to $10 per dose to procure.  In the private market, patients will pay much more.  Despite the impressive economic growth in recent years by Rwanda, more than 60% of the country lives below the international poverty line ($1.25 per day), particularly concentrated in rural areas.  This reality for the rural poor is simply not compatible with such costs.  For this reason, among others, PIH chooses to fully subsidize drug costs.  
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One morning I entered the ward to start the day and that same ominous cry echoed through the ward. My heart sank.  I knew immediately what this meant: Jean Paul’s cancer had stopped responding to the chemotherapy.  Despite performing all the necessary studies in the BWH’s pathology lab, there was still no definitive diagnosis.  His condition steadily declined.  His pain worsened; he became bed bound; then could not eat; no more smile.  He returned to sipping soda from a straw delicately held by his mother.
As part of my job requirement, I worked three months per year in the oncology wards of BWH as a part-time hospitalist.  That November, I handed over Jean Paul’s care and uncertain future to my colleagues and returned to Boston to work.  While celebrating Thanksgiving weekend with my family, I received an email from Rwanda.  Time had run out.  Jean Paul had passed away.  
The oncology wards of BWH are also challenged with indeterminate pathology diagnoses. While greater than 95% of tumors do receive a definitive diagnosis with matching treatment, even with the best pathology resources, some cases are not completely diagnosed.  However, as described, the frequency and severity of late stage presentations are quite different.  We will never know, had Jean Paul presented earlier, if it would have provided us enough time to discover a definitive diagnosis and proper treatment.  Similar to the massive global response to HIV, robust community-level public health awareness and screening campaigns are needed for non-communicable diseases (NCDs), such as cancer, to encourage early detection.  PIH in collaboration with the Rwandan Ministry of Health is looking to establish such a network at the community level.  Furthermore, the cost of essential medicines, even generic drugs, precludes access to care for millions.  Again, a global response similar to that of the HIV pandemic is needed.   Advocacy for price reductions by drug manufacturers as well as large scale investments, such as the Global Fund to Fight AIDS, Tubuerculosis, and Malaria, have had an incredible lifesaving impact on millions.  As long-term survival of HIV patients continues to improve, by 2030, for the first time the WHO Africa region is projected to suffer more deaths from NCDs than infectious diseases.  The PIH-supported model in Butaro illustrates the feasibility of quality cancer care delivery if the proper investments are made, and a scaled-up national cancer control model for Rwanda and other low-income countries will require similar support. 
Since its beginnings in 1987 in rural Haiti, PIH has focused on delivering a preferential option for the poor.  From the community-based tuberculosis and HIV treatment models to the Butaro Hospital cancer program, PIH has shown that providing quality care in rural communities is possible.  Without such support, patients such as Jean Paul are inherently precluded from accessing quality care due to limited local infrastructure, financial poverty compounded by high drug costs, and – the frequently overlooked – structural violence stemming from historical injustices.  For far too long, we have been able to say nothing, except “that’s just how it is.”  While there is always uncertainty in the ability to cure a given disease for a particular individual, what should never be uncertain is the provision of dignity to each person, regardless of race, class, or nationality, to have the chance to fight the disease, if so desired. 
Every time I arrive to the Butaro oncology wards, I think of Jean Paul.  His times of both joy and suffering are indelibly implanted in my memory, and at times, I still shed tears thinking of him.  I had hoped so fervently that he would make it and have the opportunity to live the life which every kid in this world deserves.  At the very least, I am honored to have taken part in dignifying Jean Paul’s life.  And I remain honored to continue fighting alongside the Rwandan Ministry of Health against the rising tide of NCDs.
I can still hear his cry echoing through the entire ward.  However, his voice is no longer a dark, piercing memory, but a call to action.
Paul Park is the Director of Non-Communicable Disease for Partners In Health – Rwanda.  To learn more about and support PIH’s work, please visit pih.org.

Study Finds Many Patients With Breast Cancer Develop Symptoms of Post-Traumatic Stress Disorder; Symptoms Diminished Over 1 Year

Key Points

  • During the interval between diagnosis of cancer and the initiation of treatment, 82.5% of all patients were found to exhibit symptoms of post-traumatic stress disorder, such as recurrent and intrusive reminders of the experiences associated with cancer, feelings of detachment and emotional numbness, increased arousal, sudden outbursts of anger, and an exaggerated startle response.
  • Although a full diagnosis of post-traumatic stress disorder was found in only 2% of patients 1 year after the cancer diagnosis, more than half (57.3%) continued to display one or more symptoms of the disorder at that point.
  • When patients who had already had a traumatic experience—such as a serious accident or a violent assault—prior to the development of malignancy, some 40% of them rated having breast cancer as the more severe traumatic event.
According to a study led by Ludwig-Maximilians-Universitaet (LMU) researchers, a majority of patients diagnosed with breast cancer go on to develop symptoms of post-traumatic stress disorder, and in most of these cases, symptoms persist for at least a year. These findings were published by Voigt et al in Psycho-Oncology.
The majority of women suffering from breast cancer develop symptoms of post-traumatic stress in the months following receipt of the diagnosis. The latest results of theCognicares study, led by Kerstin Hermelink, PhD, of the Breast Cancer Center in the Department of Gynecology and Obstetrics at the LMU Medical Center, show that such symptoms can still be detected a year after patients have been informed of their condition.
Study Findings
In the multicenter Cognicares study, Dr. Hermelink and her team studied a group of 166 patients who had been newly diagnosed with breast cancer. Over the course of the following year, the participants were assessed at three specific time-points for the presence of clinically significant symptoms of post-traumatic stress disorder. The results were then compared with those for a control group of patients without a cancer diagnosis.
During the interval between diagnosis of cancer and the initiation of treatment, 82.5% of all patients were found to exhibit symptoms of post-traumatic stress disorder, such as recurrent and intrusive reminders of the experiences associated with cancer, feelings of detachment and emotional numbness, increased arousal, sudden outbursts of anger, and an exaggerated startle response. Although a full diagnosis of post-traumatic stress disorder was found in only 2% of patients 1 year after the cancer diagnosis, more than half (57.3%) continued to display one or more symptoms of the disorder at that point. In contrast, the rate of post-traumatic stress disorder symptoms due to other traumatic events was very low in the controls and the patients alike.
“That the high level of stress should persist for such a long time is particularly striking,” said Dr. Hermelink. Indeed, the severity of the psychological and emotional impact of the cancer diagnosis is underlined by another result reported in the study. When patients who had already had a traumatic experience—such as a serious accident or a violent assault—prior to the development of malignancy, some 40% of them rated having breast cancer as the more severe traumatic event.
Cognicares Background
“Cognicares is one of the very few longitudinal studies of traumatic stress associated with breast cancer,” said Dr. Hermelink. Moreover, the data on which the study is based come from diagnostic interviews conducted by psychologists, and not from self-assessments. Only patients who were free of metastatic disease, and could therefore hope to be permanently cured, were recruited into the study, and women who had a history of psychiatric disease were excluded. “Indeed, we assume that the study is likely to somewhat underestimate the true incidence of post-traumatic stress symptoms in breast cancer patients,” Dr. Hermelink added.
The researchers also set out to identify factors that could account for the varying incidence and the varying duration of symptoms of post-traumatic stress disorder among their study population. “Neither the type of surgery nor receipt of chemotherapy had any significant effect on either of these variables, but a high level of education did have a favorable impact. A university education is evidently a marker for resources that enable patients to recover more rapidly from the psychological stresses associated with a diagnosis of breast cancer,” Dr. Hermelink explained.
The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.

Thursday, March 17, 2016


Tired of feeling tired? Strategies for cancer-related fatigue

By Sheryl M. Ness, R.N. March 8, 2016
Do you feel some days that you're so fatigued nothing seems to help? One of the primary concerns we hear about during and after cancer treatment is that you're exhausted. This fatigue may feel different than anything you've ever experienced.
Cancer-related fatigue is a persistent feeling of physical, emotional and mental tiredness or exhaustion related to cancer and/or its treatment. It doesn't go away with rest and can be long lasting — at times for months and years after treatment's done.
Most people experience fatigue during treatment. Symptoms may be due to the cancer itself and/or your reaction to treatment. Think about the energy it takes to heal from surgery, chemotherapy and radiation. On top of that, your daily routine may be completely interrupted by appointments and tests. Plus, there's the stress and anxiety about your diagnosis.
Try these strategies to decrease your fatigue.
First, nutrition and hydration provides the fuel to help you heal, recover and maintain energy:
  • Sip on water, tea or other liquids throughout the day.
  • Focus on foods that are good sources of protein, healthy carbohydrates and calories.
  • Experiment with frequent smaller meals and snacks.
  • Keep foods on hand that are quick and easy, with little preparation (cheese, yogurt, peanut butter, nuts, etc.).
  • Eat your main meal when you feel well-rested.
Exercise is one of the most effective ways to reduce cancer related fatigue:
  • Plan exercise for the time of the day when your energy is highest.
  • Begin slowly with short bursts of exercise and work up from there (start with 10 minutes).
  • Partner with someone who has similar goals.
  • Make exercise a daily habit.
Sleep is like a reset button for your body and is important to help you heal and recover each day:
  • Be consistent with bedtime and wakeup times.
  • Limit naps to 20 minutes.
  • Keep your bedroom quiet and comfortable.
  • Avoid using cellphones and computers for an hour before bed.
  • Practice deep paced breathing to fall asleep.
Stress may play a part in your level of fatigue:
  • Try guided imagery and meditation exercises.
  • Experiment with the gentle movements of yoga and tai chi.
  • Practice mindfulness by focusing on what brings you joy each day.
Keep in mind that nutrition, exercise, sleep and managing stress work together to decrease fatigue. Consider setting new goals in each area.
I'd love to hear what's worked well for you.
With
Follow on Twitter: @SherylNess1

Tuesday, March 15, 2016


John Grisham book turns spotlight on futuristic cancer treatment

Reuters 
Author John Grisham and Neal Kassell are seen in an undated handout picture courtesy of the Focused Ultrasound Foundation
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Author John Grisham (R) and Neal Kassell, neurosurgeon and founder of the Focused Ultrasound, are seen …
By Amrutha Penumudi
(Reuters) - A new book by bestselling author John Grisham is giving new impetus to a handful of companies striving to develop what they say could be a trailblazing treatment for cancer and Alzheimer's disease.
"The Tumor" is a fictional account of a 35-year-old man with brain cancer who, a decade into the future, is treated with focused ultrasound - a real-life technology that is currently being researched as a potential cure for more than 50 diseases.
Focused ultrasound uses soundwaves to destroy damaged tissue deep within the body, doing away with the need for incisions or radiation therapy. It has been approved in the United States as a treatment for several conditions, including prostate cancer.
As a treatment for brain and other cancers, it remains a futuristic concept. Research is at an early stage and, with clinical data in short supply, U.S. insurers have so far been reluctant to provide coverage.
But the book, which Grisham has released free of charge, could help developers to make a case for funding needed to take this niche technology into the mainstream, said several company executives and physicians interviewed by Reuters.
"Having a world-famous author talk about it can only help raise awareness," said Mark Carol, chief executive of Charlotte, North Carolina-based SonaCare Medical LLC.
SonaCare has two focused ultrasound devices on the market, one to treat diseased cells in soft tissue and another to ablate prostate tissue.
Men using SonaCare's device as a treatment for prostate cancer had a 9-in-10 chance that an MRI scan would show no sign of a tumor after 12 months, according to a study published in The Lancet Oncology in 2012. (http://bit.ly/1ppfkHR)
InSightec Ltd, an Israeli company backed by General Electric Co's GE Healthcare unit and York Capital Management, has approval for different uses: the treatment of bone metastases and uterine fibroids, benign growths in the walls of the uterus.
Maurice Ferré, InSightec's chief executive, said enquiries from patients about the company's devices for the brain had increased "by a factor of a hundred" since the book's release.
'LACK OF AWARENESS'
Grisham is on the board of the Focused Ultrasound Foundation, a non-profit organization. He describes "The Tumor" as "the most important book I've ever written."
The author of legal thrillers "The Firm" and "The Pelican Brief" says he was neither paid to write the book nor stands to gain financially.
In an emailed response to questions, he said "a lack of awareness about focused ultrasound is a major impediment to development of widespread use of this promising technology."
For Sherman Oaks, California-based BrainSonix Corp, which is conducting early-stage research on brain mapping, the book has led to a spike in enquiries from scientists and investors, said Chief Executive Alexander Bystritsky.
Other companies, such as Ann Arbor, Michigan-based HistoSonics Inc and France-based, Nasdaq-listed EDAP TMS SA, say the main benefit of the book will be to spread word among patients.
To date, successes such as this month's first prostate ablation treatment using technology developed by EDAP, have not translated into any prolonged bump in stock prices.
That's partly because focused ultrasound has been used only on small tumors that were diagnosed early and are easily visible on an imaging device, said Ashutosh Tewari, chairman of urology at Mount Sinai Health System, a New York City hospital network.
"I don't think this will become standard of care any time soon," said Tewari.
Treatment is more expensive than lasers and other thermal devices in everyday use. Big U.S. insurance companies have paid out on a case-by-case basis, unwilling to provide widespread coverage for what is a relatively untested technology.
Thomas Andreae, marketing director of magnetic resonance therapy at Philips Healthcare, said demand for the company's focused ultrasound devices was strongest in countries where a reimbursement structure was in place.
The company, part of Dutch conglomerate Philips, sells devices for the treatment of uterine fibroids outside the United States.
Ultimately, the potential for focused ultrasound could expand beyond surgical oncology to the treatment of Alzheimer's and other neurodegenerative diseases, said Kevyan Farahani, program director at the National Cancer Institute's imaging guided intervention branch.
The technology's potential to cut through a protective layer known as the blood-brain barrier would make it capable of delivering drugs straight to the brain, tackling a crucial issue in treating such diseases.
(Reporting by Amrutha Penumudi in Bengaluru; Additional reporting by Ankur Banerjee; Editing by Robin Paxton)

Friday, March 11, 2016


I Confronted the Doctor Who Missed My Cancer

When a 'Grey's Anatomy' writer ran into the doctor who failed to catch the tumor in her knee, she didn't get mad. She made an appointment.

For nearly two years, I've been obsessed with medical journals. Volumes of fascinating, disgusting material that could only be described as NSFAnyoneInHerRightMind. But I read them all, equal parts wide-eyed and nauseated. No, I'm not a doctor. I just write about them for TV.
The writing staff of Grey's Anatomy is fortunate to have countless resources to satiate our curiosity and our desire to accurately portray surgeons at the top of their game: access to top medical professionals, writers with past lives as doctors, and a researcher who's a walking medical dictionary (and someone I'm convinced could perform an appendectomy if asked nicely). But as someone who was diagnosed with a rare bone cancer in my thirties, I'm in constant pursuit of stories that start the same way mine did: This rarely ever happens, but… The more unexpected the source, the better: distant relatives at Thanksgiving; flight attendants; the heart surgeon I meet while downing Mai Tais on my Hawaiian hiatus from writing onGrey's
THE LONGER HE SPEAKS THE MORE I FIGHT THE URGE TO LUNGE ACROSS THE ROOM AND PUMMEL HIS PERFECT FACE.
On one of my more traditional research excursions, I attend a university lecture featuring top Sports Medicine doctors in Los Angeles. Since my diagnosis, I've gleaned more firsthand knowledge of orthopedic surgeries than I ever hoped to, but I go anyway, expecting 85% boredom, 15% awesome. What I don't expect is to see him.
He is perfectly coiffed with salt-and-pepper hair, a perfectly sloped nose, and perfectly smug grin. He recognizes me immediately, and waves as he finds his seat onstage. You look great, he mouths. You must be well. I smile in tacit agreement as I instinctively zip up my hoodie so he can't see the bandages covering my port-a-catheter.
Dr. Perfect, my former doctor, has no clue about the tumor in my spine, the years I spent chasing dead ends and clinical trials across the country—and I have no intention of telling him. Instead I sit, stock still, while he regales the audience with stories of rebuilding cartilage and Olympic dreams from scratch. The longer he speaks, the more I fight the urge to lunge across the room and pummel his perfect face. But I don't lunge. I don't pummel. I smile. I nod.I behave.
ON A BREAK FROM CHEMO AND WRITING.
Behaving is what I was taught to do—as a child, a student, a woman. Sure, I was a pain in the ass at home, where my parents made it safe to test boundaries. But it was a point of pride to me that I was considered "raised well." I placed a high premium on pleases and thank yous (and thank-you notes). I kept every promise and commitment I made. Teachers were rulers and doctors were gods—whatever they said, I didn't just listen, I wholeheartedly believed.
So several years ago (pre-cancer diagnosis), when Dr. Perfect sat me down after four failed surgeries to repair the knee I damaged in a hiking accident and said: "I don't know what to do with you anymore," I didn't see his limitations, only mine. I found nothing wrong with his favorite question: "What is your chief complaint?" I felt mollified when he half-joked: "Neurotic Jewish Women are my specialty." I didn't question him when he prescribed anti-depressants—rather than another MRI—after I confided I was sleep deprived from constant knifing back pain. I convinced myself that his inability to fix me was my failure, not his. I wasn't tough enough. I weighed too much, exercised too little. It was my fault I couldn't walk to the grocery store without a cane and a fistful of Vicodin.  He called me "impatient" and "emotional." It never occurred to me that being "female" was perhaps the most dangerous label of all.
Soon after Dr. Perfect "released" me as his patient, I found another surgeon. He saw the 17% cartilage remaining in my knee and declared that a knee replacement was the only solution. Halfway through the procedure, he discovered a mass on my tibia. They biopsied it twice because he couldn't believe what he was seeing: chondrosarcoma—a form of bone cancer almost unheard of in anyone my age (the average age of diagnosis is 51). The knee replacement surgery itself was successful, but my cancer prognosis was poor. An additional tumor encroached on my lower spine. Chemotherapy rarely shrinks chondrosarcoma, but it was my best option. The next three years, off and on, were an onslaught of PET scans, surgeries, and harrowing clinical trials. Additional tumors took up shop in my lung and liver. My kidneys took a major hit. My pride and relationships did, too.
At the time of my initial diagnosis, I didn't bother asking how or why it took so long to discover the cancer. I had neither the energy nor the desire to play the "What If" game—I was too busy juggling full-time work and bi-weekly chemo. Now, years later, my lung and liver are cancer-free; but my spine is home to a small cluster of cancer cells that doctors continue to watch like hawks. I'm moving forward with my life.
I DIVED INTO A PILE OF RESEARCH, DETERMINED TO DISPROVE MY SUSPICIONS THAT I WAS A VICTIM OF GENDER BIAS.
Yet there I was at that lecture, sitting square in front of Mr. Perfect, wondering: what had Imissed? The moment it ended, I slipped out and dived into a pile of research, determined to disprove my suspicions that I was a victim of gender bias, and instead just a freak medical case I'd be happy to hear about at a dinner party. The first article I read was a case against Kaiser Permanente where Anna Rahm was awarded $28 million dollars. She'd complained of severe back pain, and instead of an MRI, her doctors sent the five-foot-four, 125-pound 17-year-old to a nutritionist to lose her "belly weight." Her tumor went undetected for months, and Anna's right leg, half her pelvis, and part of her spine were amputated.
Next in the pile: Maya Dusenbery's article asking "Is Medicine's Gender Bias Killing Young Women?" I found her answers chilling. She cites a Yale School of Public Health report that reveals how women delay or downplay their need for treatment—often for fear of being labeled a hypochondriac —despite the fact that women under 50 are approximately twice as likely to die of heart attacks than men.
WITH KATHY KRAEMER, ONE OF MY BEST FRIENDS, WHO'S BEEN THERE THROUGH THE WORST.
Dusenbery also illuminates that 75% of autoimmune disease patients are female, and it takes an average of "five years and five doctors" to diagnose them—half of whom report being labeled "chronic complainers." Both "The Girl Who Cried Pain"by Diane E. Hoffmann and Anita J. Tarzian and Karen Calderon's "The Influence of Gender on the Frequency of Pain and Sedative Medication Administered to Postoperative Patients" uncover that "Women are more likely to be given sedatives for their pain and men to be given pain medication." Lena Dunham and Jenni Konner's Lennydevoted an entire recent issue to endometriosis—nearly every piece echoing the same journey: years of debilitating pain, delayed diagnosis, and what Padma Lakshmi describes as a "mangled" relationship with her body.
As I moved through each study, I flashed back to being doubled over in agony in the ER during graduate school. A doctor and two nurses told me: "We'll help you when you stop screaming." I bit my tongue until it bled to stifle the pain, and they reluctantly agreed to a CT. Only when they had irrefutable evidence that my pain was real—I was passing three kidney stones—did they give me pain medication.
NEARLY EVERY ARTICLE, STUDY, OR FIRST-PERSON ACCOUNT REVEALED SIMILARLY ALARMING PATTERNS: WOMEN ARE SEDATED (I.E. SILENCED), DIMINISHED, OR DISCOUNTED, WHILE MEN'S SYMPTOMS ARE TRUSTED, VALIDATED, AND TREATED.
Nearly every article, study, or first-person account revealed similarly alarming patterns: Women are sedated (i.e. silenced), diminished, or discounted, while men's symptoms are trusted, validated, and treated.  Yet women continue to do the apologizing. We too often shrink under the weight and shame of appearing difficult. We use the word "just" to temper our complaints or accolades. We soften and qualify and endure. We behave.
I stared at the pile of overwhelming research and felt the same urge to lunge and pummel. I unearthed the worn accordion file of my medical history and found Dr. Perfect's business card. I made an appointment.
WHETHER HIS FAILURE TO DIAGNOSE ME WAS MALPRACTICE OR NOT, HE EFFECTIVELY SILENCED ME.
A week later, I'm sitting in his perfectly sterile patient roomevery file and scan laid out in front of me. I catch my profile in the mirror. My eyelashes are growing back in. I need a haircut for the first time in a year. On the outside, I look as if nothing's changed. And for all Dr. Perfect knows, nothing has. When he arrives, he's perfectly polite. He asks to see my knee scar to note how it has healed. I pull up my pant leg and he stares, befuddled. It's now a six-inch zipper scar across my kneecap. I ask: "Would you like to see the rest? The gash where my port was put in twice? The base of my spine? The space where an eighth of my tibia used to be?"
He sits back in his chair and takes a deep breath. I point to the scans, reminding him how my story started, then I tell him how it ends. For one brief moment, his eyes betray him; he's stunned silent. Then, a switch flips. He spouts vague legal terminology at me until I sign on dotted lines, agreeing that I won't sue him—that I'm just there to talk. I spend the next hour shooting questions at him, rapid-fire: "Knowing what we know now, is there any evidence of chondrosarcoma in my previous scans?" "How else might my cancer have revealed itself: Blood work? Bone density tests? Further investigation of my family's cancer history?"
I have every intention of asking him why, out of all the people he saved, he failed to save me. But that answer is finally clear: You can't save someone you insist doesn't need saving.
We sit in painful, protracted silence as I stare at his perfectly tanned, inscrutable face. I'm hoping he'll say something, anything to make me feel better. He cocks his head to the side: "You seem angry..." 
I leave feeling empty. I expected fireworks and an epic speech in which I righted every wrong and brought him down to size, swooping out in a superhero cape and a flurry of self-righteousness. But there were no fireworks. No capes. And no answers. Only more questions. I walk aimlessly around the neighborhood for an hour when I spot a group of mourners outside an old stone church. I know nothing about Episcopalians and they know nothing about me. But I slip inside anyway, unnoticed, and sit in the back pew. A choir sings an out-of-tune hymn I don't know, for a woman I'll never meet, and I dissolve into silent, relentless tears.
A TOAST WITH MOLLY FAST, ANOTHER OF MY BEST FRIENDS WHO'S BEEN THERE FOR ME.
Weeks later I'm in a conference room, surrounded by my mighty team of oncologists—all male, none of whom appear to have seen daylight in months. They propose a game plan for the upcoming year: scans every three months; weekly lab work; and daily medications. We debate, at length, the risks versus benefits of such frequent scans, but we're all advocating for the same thing: me. They end our meeting withtheir favorite question: "Did anything unusual happen this week?" I consider telling them about Dr. Perfect, but I don't waste their time. They have all the answers they need. 
I do, too. I have no proof that Dr. Perfect missed something, nor do I have the desire to point fingers or make him feel as small as he made me feel. Besides, what possible reward could I get for being right? Whether his failure to diagnose me was malpractice or not, he effectively silenced me. For years. I no longer want to lunge and pummel anymore—I want my voice back.
Dr. Perfect doesn't bill me for our two-hour appointment. I buy an absurdly expensive thank-you card (old habits die hard) and I stare at the blank page inside. Two weeks and two whiskey shots later I finally write: "Dear Dr. Perfect: Thank you for your time. I'm not angry. I'm just done behaving."