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Thursday, April 7, 2016
My doctor told me I may be at risk of bleeding problems during chemotherapy. Why is this a concern? Is there anything I can do to prevent bleeding?
Chemotherapy can weaken your bone marrow's ability to produce platelets, a blood cell that helps stop bleeding by binding to the site of damaged blood vessels and helping your blood to clot. When you have low levels of platelets, you bleed and bruise more easily.
Tell your doctor immediately if you have:
Cuts that bleed excessively
Menstrual periods that are heavier or last longer than usual
Bloody vomit
Black or bloody stool
Reddish or pinkish urine
Dizziness, headaches or changes in vision
Unexpected bruising
Red spots under your skin
To lower your risk of bleeding:
Shave with an electric razor, not a razor blade.
Don't walk around barefoot.
Blow your nose gently.
Brush your teeth with a soft toothbrush.
Avoid contact sports and other rough activities.
Use sanitary pads instead of tampons.
Don't drink alcohol without first asking your doctor.
Don't take any over-the-counter medicines without asking your doctor.
Eat high-fiber foods to avoid constipation. Hard bowel movements can scrape at the lining of your intestines.
If you do start to bleed, use a clean cloth to press down firmly on the area until the bleeding stops. Call your doctor if the bleeding doesn't stop after a few minutes.
The author and her mother, Nancy O’Keefe Bolick, on the first day of first grade in Newburyport, Massachusetts.CREDITPHOTOGRAPH COURTESY KATE BOLICK
For most of my life, I had only one memory of my mother’s first mastectomy: On the day she returned home from the hospital, she took my little brother and me into the bathroom and lifted up her shirt. She was forty, he was six, I was ten, and the three of us looked at her reflection in the mirror rather than directly at her chest. The thick red scar where her right breast had been was a violent surprise, like a gash in an oil portrait of a mother and her children. She explained surgery, and cancer, and remission, and we asked questions. Then we all went out for pizza.
And so her illness became an everyday fact of our lives—though “illness”seems too loaded a word for a woman as healthy and vital as she was, all fresh green vegetables and swimming laps at the Y.W.C.A. three days a week. She never once made me worry, or feel afraid. My own breasts were just starting to develop, however, and, as puberty molded me into her same shape, I decided it just wasn’t possible to look and be so much like her and not also harbor the same disease. Cancer is like a secret that insists on being known.
When I was in college, I asked my mother if she believed in an afterlife, and she said no. This didn’t surprise me—she’d finished Catholic school an atheist—but it bothered me. I reasoned with her: “None of us can say for certain there’s no life after death because we’re still alive,” and, “What if there is an afterlife and, by refusing to believe in it, you lose your right to send signs from beyond the grave?” and, “How about this: let’s just agree to agree that there is an afterlife, and if there is, when one of us dies, we can send signs, and if there isn’t that’s that. But at least we’ll have the option.” She laughed and said no, thank you.
A year later, after her cancer had reëmerged and killed her more swiftly than we’d ever thought possible, I thought of this conversation often, and was annoyed. Thanks for leaving me alone in this cold, echoing void, Mom. Would it have hurt her to humor me? To at least be on the lookout for signs from beyond would have been a comfort. I envied people who deluded themselves by visiting mediums or psychics, and I bridled at those who said my mother was “watching over” me. Maybe other mothers did such a thing, but not mine.
In my thirties, I developed the habit of returning home at least once a year and working out of my mother’s office on the second floor, which remained entirely as she’d left it. When she was alive, I’d had no interest in journalism, and now here I was, writing for magazines and newspapers, exactly where she had. My father eventually dismantled her bulky first-generation PC and put the hard drive in the closet, but her desk, an old wooden door laid across two metal filing cabinets heavy with hanging file folders, didn’t budge. All I had to do to spend hours in her company was open a drawer.
And yet I never did. In 2012, when I started writing my first book, “Spinster: Making a Life of One’s Own,” I spent the entire summer in that office. Every morning I’d walk upstairs with a mug of coffee and sit down at that makeshift desk; never once was I tempted to open a drawer. When I needed to confirm a factual detail about her life, I’d e-mail and call her brothers and friends, as if the answers weren’t already there, at knee level.
I told myself that this was what resistance felt like. If I opened one of the drawers, something like her soul might slip out, and then I’d have nothing of her left. It was frightfully easy to imagine her on that last just-another-workday morning, finishing up a reporting call, dropping her notes into a folder, suddenly realizing she was running late, shoving the drawer shut, grabbing her purse, and driving into Boston for a routine doctor’s appointment, never to return. Her descent was so abrupt. How many articles did she abandon mid-draft? Did anyone call her editors to explain what had happened? She died too soon, hadn’t had time to hit her stride, to create something that would endure. Those files didn’t merely contain the last gasp of her living spirit—they were graveyards of journalistic ephemera, tragic monuments to all she’d never achieved, and in this way a cautionary tale, a physical reminder of what would happen if I didn’t hurry up and get my life in motion and make use of however much time I had remaining.
My first thought when the surgeon told me I had breast cancer was, Of course. I finally wrote a book. Now I die.
That sounds far more dramatic than I felt. When I turned thirty-nine without receiving my own diagnosis, then forty, then forty-one, I’d grown uneasy. Had I been crazy all this time? Was I actually going to skate through life evading the dreaded C?
But I had to wait only one more year. On that bright, cold afternoon in December, 2014, I was primarily relieved: this particular shoe had finally dropped. I watched the surgeon very closely to make sure I caught everything he said with his words and his face. His blue eyes narrowed in an expression that demanded I pay attention: “This is the best cancer you could have. Stage 1A. Tiny tumor. Very responsive to treatment. You are not going to die from this. You should thank your body for being so good to you.”
I scribbled his words in my notebook. Then I stopped.
“I am not going to die from this,” I said.
“You are not going to die from this,” he said.
In January, he wheeled me into an operating room, and I was put under general anesthesia. First, he made an incision in my left areola, tunnelled down to nearly my rib cage, and removed the malignant tumor. Then he cut into my armpit and retrieved three lymph nodes to confirm that the cancer hadn’t spread. When the surgery was over, I took a cab home to Brooklyn. Two friends came over with takeout.
It was the follow-up consultation, in February, that caught me off guard. Before treatment could be determined, the surgeon explained, I needed to be tested for the BRCA mutation, a genetic anomaly that can impair a body’s ability to suppress tumors. If I had it, a double mastectomy was advised.
I’d never doubted that I had the mutation.
“Doctor!” I said. “I don’t have time for an amputation!”
I was joking, but not really. The initial irony of dying just as my first book came out had seemed grimly appropriate, and frankly much easier. This more concrete likelihood of getting both of my breasts removed as publication day neared was like sprinting head first into an oncoming train. How could these two things happen simultaneously?
But, on March 11th, I learned I don’t have the BRCA mutation.
On March 16th, I began seven weeks of daily radiation.
On April 21st, “Spinster”was published, and I paused radiation to go on book tour.
On May 11th, it was over.
Three months later, in August, while home visiting my father, I walked upstairs to my mother’s office, crossed the room, and, before I knew what I was doing, grabbed the handle of one of her filing cabinets. The drawer slid open, the first time in nineteen years.
My eyes immediately landed on a folder labelled MASTECTOMY, which I recognized as a freelancer’s catchall: notes, drafts, research, pathology reports. Confronted by the evidence, I suddenly remembered that, two years after my mother’s first mastectomy, she’d written about it for Boston magazine.
I brought the folder to the armchair and cringed to think of why I’d forgotten this essay: when I was in college and my mother had tried to share her work with me, I’d privately dismissed the subjects she covered, such as breast cancer and divorce, as frivolous “women’s journalism”—the sort of writing that I, a poet in the making, was above. I’d responded arrogantly, and in the ensuing years had pushed the exchange—and the essay—out of mind.
There was a stapled photocopy of the article, “Diagnosis: Malignant,” published in July, 1985. Almost everything I read was news to me. Turns out she was thirty-seven when she first felt the lump in her breast. She made an appointment with her local doctor, who passed it off as nothing, and continued to say it was nothing for two years—even though it kept getting bigger. It was her dear friend Maureen who urged her to see a specialist in Boston. He took one look, decided the lump was a malignant tumor that had been growing for nearly a decade, and scheduled her to come back in ten days for a biopsy.
She was terrified, and rightly so, given the severity of her diagnosis and the probable outcome. “Those 10 days in limbo waiting for the biopsy were the worst,” she wrote. “The terror gnawed at my stomach; macabre fingers of fear squeezed my neck. Surprisingly, I didn’t dream of dying, but my conscious mind hardly gave me a break. I felt like Wile E. Coyote in the old Saturday morning ‘Road Runner’ cartoons, blissfully unaware that he’s run off the cliff until he looks down at the canyon yawning below his whirling feet.”
I learned that in 1983 it was still common for a woman to be admitted to the hospital for a biopsy, wait there for the results, and then undergo the surgery—in her case, a nearly two-week ordeal. The folder held a typewritten letter: apparently suspecting that she’d be away for a while, she had supplied a note to my father reminding him which days to pick up my brother and me from play rehearsal or soccer practice, and not to forget our Tuesday-night treat of one TV show.
She underwent chemotherapy for fifty-seven weeks. She lost her hair in big, furry clumps but refused to wear a wig, because doing so felt too much like giving in. She continued working and seeing friends and swimming laps at the Y. Overall, she reported feeling almost lucky. “I don’t go around town shouting about the virtues of cancer,” she wrote, “but I do believe that dealing with death as an immediate possibility, rather than as a phantom terror, has enriched me. . . . Contracting cancer certainly won’t make you like it, but assuming that you work through the pain and come out intact—or partially intact—as I did, you realize that the lessons cloaked in fear are the invaluable ones that most people simply don’t learn. Cancer taught me much more about life than it did about death, although I learned a lot about that, too.”
The mid-eighties were still the early years of what’s now known as breast-cancer awareness, when women were newly speaking openly about what had long been treated as a shameful condition, and seeking a sort of sisterhood. (The now-ubiquitous pink-ribbon campaign launched in 1991.) Hardly the frivolous “women’s journalism” I’d once dismissed it as being, her article was a crucial step in this process. Breast cancer is not a feminist disease, just as not all spinsters are feminists (as people sometimes ask me), but, because centuries of patriarchy have distorted every aspect of the female experience, both feminism and breast cancer were stigmatized and misunderstood until radical nineteen-seventies activists made them political issues.
This doesn’t mean one needs to be radical, or an activist, to be a feminist, of course. Feminism is an ecosystem of ideas that relies on a diversity of temperaments to be generated and disseminated. There are brazen trailblazers like Charlotte Perkins Gilman, who galvanized audiences by lecturing tirelessly on equal rights. There are solitary geniuses like Maeve Brennan, who, in co-opting the male tradition of the urban flaneur, gave voice to the experience of being a woman alone when marriage rates were at their highest (all without once identifying herself as a feminist). There are small-town freelance journalists, like my mother, who carried the torch lit by crusaders into the mainstream by writing about breast cancer for popular magazines; combined, their efforts brought the disease the public attention and research funding it had long been denied.
When I finished reading the Xerox, a new memory reared up: after that first mastectomy, my mother became something of a one-woman hotline for the similarly afflicted. Sometimes I’d come home from school to find her comforting a stranger in a headscarf over a pot of tea. I pictured a gum wrapper with her name and number in smudged pencil being passed from one suburban patient to the next. It wasn’t some ideal of female saintliness that motivated her—she had nothing but contempt for the holy fairy tales of her Catholic youth—but the unshakable conviction that talking is transformative, that, save for death itself, everything is improved with honest conversation, whether in person or on the page.
For the first decade after her death, I wore my mother’s rings and never removed them. One was too big, and I worried constantly that it would slip off my finger and be lost forever. Finally, it did. I returned home from shopping at a vintage-clothing boutique and realized it was gone; rather than call the store and ask if they’d found it, I decided to let it go. It was time I stopped constantly reminding myself that I’d lost her.
My mother’s fate wasn’t mine after all, genetically or sociologically. Just as I’d once been wrong to believe that I needed what she had—marriage, children—to find meaning and be happy, I was wrong to think myself her biological clone. I really am my own woman, apart from her. More crucially, I’d inherited a world that she’d had a part in making.
I still believe that my mother had much more left to do, but, reading her essay, I understood that she’d already done important work—for women in general, and for me personally. Thirty years later, I’d go in for my annual mammogram, and a series of highly sophisticated MRI and ultrasound tests would detect the presence of a minuscule malignancy lurking at the very bottom of my breast. While a team of doctors analyzed these results, I’d wait in the lobby tweeting with acquaintances about “breast pancakes” (each breast is flattened between two plates) and “those weird pastie things for nipples”—a long way from the days when a woman was sent home to worry alone about a lump she could both see and touch. By expanding the conversation around breast cancer, my mother had done much more for me than send those signs from beyond that I’d once craved.
During my own first brush with cancer, I’d been surprised and relieved to find myself thinking that, were I to die right now, I wouldn’t mind too much, because at least I’d finally made my life the way I wanted it. Maybe it took me so long to open a drawer because I couldn’t risk discovering that my mother had, after all, achieved her ambitions; if I did, I’d lose the drive to achieve my own. Or maybe I just needed to show myself that I could stand without her before I could admit that she’d been there all along.
This piece was drawn from the afterword to the paperback edition of “Spinster,” by Kate Bolick, which is out April 19th from Broadway Books.
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
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.
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.
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.
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
By The ASCO Post Posted: 3/16/2016 9:52:47 AM Last Updated: 3/16/2016 9:52:47 AM
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®.
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