When my silent assassin emerged last autumn, I pressed my surgeon about the prognosis for a form of peritoneal cancer that strikes women in stealthy fashion.
“Do you really want to know?” he replied. “Your cancer is incurable.” As I gazed at him in disbelief, he coolly recommended palliative care at a nearby regional hospital with an easy commute. My memory of this moment has a Caravaggio-like quality, a camera obscura scene of shadows and shock. I did not weep. I rebelled. I raged at the notion of being ushered toward a comfortable death by male doctors from a community hospital who confidently assured me that this was the sole treatment for a female malady.
I had ignored the symptoms for long enough that it appeared to my physicians to be too late for aggressive action. Last November, on a Thanksgiving journey to New York, I noticed I wasn’t hungry, and blamed my lack of appetite on enormous New York restaurant portions. But when I returned home to France, waiters were prodding me to eat my comfort cuisine: a warm goat cheese appetizer or puréed potatoes. “Is there something wrong with the food?” they asked. Embarrassed, I assured them the food was fine.
But I wasn’t. Soon I could barely sip plain broth, yet my belly was bulging almost into the curve of pregnancy. The day I vomited blood, my husband rushed me to the nearest community hospital, not far from where we live in a village by the river Oise, northwest of Paris.
This was strange territory. I had not entered a hospital since my daughter was born 21 years earlier. I was stunned to be hospitalized immediately, and then endured three weeks of a relentless series of blood tests, CT scans, and exploratory surgeries — tended by a parade of male doctors. My surgeon finally informed me that the tests indicated a rare form of peritoneal cancer.
This merciless killer attacks the peritoneum, the thin layer of tissue that lines the abdomen, and seeds it with tiny tumors. Peritoneal cancer is furtive because the early, vague symptoms are often overlooked or mistreated and there is no screening test for it. Diagnosis usually comes late, after the cancer has spread. It is cared for in the same way as ovarian cancer, because the surface of the ovaries is made up of the same kind of cells that compose the peritoneum.
Through the long days in the hospital, an odd question nagged me in my dreams and waking hours: How were these paternalistic doctors so confident about their edicts for women? It gave me solace to challenge them with questions. After an eternity in the journalism business, it was all I knew how to do. What about alternative treatments at other hospitals? New medical techniques? Fresh hope? But clearly it annoyed my doctors.
Every hospital, the surgeon assured me, follows the same standard treatment. Another physician grew exasperated with my questions about test interpretations. He snapped at me for interrupting him; for not behaving like a patient. “Madame, you are too impatient.”
I had no choice. Time was the very thing I was losing. In that instant, as the doctor turned his back on me and rushed away to see other patients, I made a decision to be my own advocate. Panicked, I started researching online from my hospital bed and reading studies. Prognosis: bleak.
I learned, though, that others shared my concerns about the treatment of female illnesses. A 2013 survey of 13,000 women with ovarian cancer in my native state of California showed that nearly two-thirds did not receive standard care because they were patients at hospitals that didn’t treat many women with ovarian cancer. African-American women were even more likely to receive inferior care. The lesson was clear: Low-volume hospitals may not have access to gynecologic oncologists who are aware of the latest treatments with better success rates.
I fled the hospital with advice from the nurses in my circle of family and friends, shepherded by my brother-in-law, a doctor in Sweden. He identified and arranged for my transfer to Gustave Roussy outside of Paris, one of the top cancer research centers in Europe. It was an hour and a half commute from my home to this vast cancer land, a campus where about 50,000 French and international patients are treated annually.
The reception area had the brisk efficiency of an airport check-in desk, dispatching visitors to numbered sections for blood tests, chemotherapy, the surgical wards, and a style center selling chic turbans and makeovers for cancer patients. Like most patients in the French system, my care was 100 percent covered by the state, including the wig I eventually needed.
And here, at last, a woman took command of my care as the leader of an ovarian cancer research project. This oncologist listened to my questions. She explained medical approaches. She promised me that her goal was a cure instead of surrender. And she was the very first to propose immunotherapy, which harnesses the patient’s own immune system to attack cancer. It is an approach that has revolutionized the treatment of many forms of the disease and, earlier this month, reaped a Nobel Prize for two scientists, one in the United States and the other in Japan, whose work led to the development of this groundbreaking approach.
I enrolled in a new trial of just six women with ovarian-related cancer, knowing all too well that immunotherapy is not always successful and there is a randomness about who survives and who succumbs.
By the time my treatment started with a more classic chemotherapy in mid-February, the assassins inside me had multiplied into an angry horde. Blood tests measured their presence through CA125, a protein used as a marker for ovarian and peritoneal cancers. A normal range is zero to 38. My count had soared toward 22,000.
When immunotherapy was added, I settled every three weeks into a chair beside an IV pole with tubes of liquid drugs running to a port implanted in my shoulder. I wore earbuds blasting a playlist of soundtrack music from spy movies. To the beat of “Kill Them First” from “Skyfall,” I imagined my white blood cells hunting down my enemies.
Under ordinary circumstances, immune cells try to attack tumors, but are fended off by a molecular shield. The immunotherapy drugs transformed my white blood cells into a deadly resistance force that crushed the shield and destroyed the lurking tumors. I experienced no major side effects, although I was fatigued for days after the infusions.
To my amazement, I emerged as the poster girl for my tiny trial. With the addition of immunotherapy, over the weeks my CA125 count started plunging dramatically to a normal count of four. After a hysterectomy as part of my treatment in May, my new surgeon examined the dead cancer tissues and rushed to tell my oncologist that “something is really working.” A month later, my oncologist used my chart to illustrate the power of immunotherapy to researchers in France and others in England, where she delivered a lecture, “Immunotherapy: Hope or Hype?”
Some days I gasp involuntarily for air, savoring this new hope. Today, 10 months after my symptoms first appeared, I am cancer free. Researchers are analyzing my tissues to see if there might be a genetic reason to explain why I thwarted cancer while the other women in my tiny group made progress, but not to the same extent. Six more women have begun another trial.
I took my daughter to one of my follow-up exams so she could meet the woman who helped save my life. While we waited in a corridor for the appointment to start, my daughter asked me a surprising question: “Would you ever again let a male doctor treat you for a woman’s illness?”
I paused. “Maybe not,” I told her, and then backtracked. “I’m not sure.” But her question prompted me to send an email along with my medical charts to my first surgeon, who had assured me on that distant winter day that my cancer was incurable.
I told him that I wanted to share my positive results to help the next anxious woman who needs the newest alternatives for an ovarian-related illness. “Tell her to seek the research,” I wrote. “Give her the latest information. Give her hope.”
Weeks later, I am still awaiting a reply. With impatience.
Doreen Carvajal is a Paris-based journalist, author, and former reporter for The New York Times.
What is the immunotherapy drug that they used when you have peritoneum cancer
Can you please guide us more on this?
We are from bangalore, india
Thanks a ton
What was the immunotherapy drug used?
Does anyone know what happened to Doreen Carvajal?
@Diana If you click on her Twitter handle above, it looks like she is still active there. Maybe that will help you! I do wish she would post an update.
My dear friend has just been diagnosed with peritoneal cancer after a hysterectomy for suspected fallopian cancer two weeks ago. Her gynaecological oncologist has recommended chemotherapy but I’m in a race to help find a better first treatment.
My mother has been diagnosed with PC. Can you please advise who treated you and if there are any oncologists proficient in this treatment in the New York metropolitan area?
I wish there were more solid details & references in this article. I also am interested in connecting with others who have Peritoneal Cancer. [email protected]
I notice that you have not included any references. Please provide links to valid research supporting your results. Surely your oncologist or the immunotherapy researchers published their results?
My husband was diagnosed with peritoneal cancer. What can we do, if anything?
I have peritoneal cancer and would like the name of the immunetherapy that they treated you with. I was told by my oncologist that there is no immune therapy for my type of cancer and that only chemo is available.
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