Living With Cancer: Teal Ribbons by Susan Gubar

New York Times Living with Cancer

“Does anyone know that September is Ovarian Cancer Month?” Antoinette Gallelli asks in “Ovarian Cancer, My Walk With It,” a memoir self-published two years ago. A banner in an infusion room reminded her of the commemoration. “The saddest thing was that I didn’t hear it on the television; in fact, I personally didn’t hear it anywhere. I would hope that in time this will change.”

As the title of her slim book indicates, Ms. Gallelli viewed herself as a typical casualty of a cancer once called “the silent killer” and then “the whispering disease.” From my perspective, she suffered all the miseries of traditional medical approaches without benefiting from the innovative treatments now being developed by researchers.

Like many of the 98,000 American women annually stricken with gynecological cancer, Ms. Gallelli experienced muted symptoms that were misdiagnosed for several years by a number of different gynecologists and internists. Abdominal bloating, weight loss, and a sense of satiety eventually made her ask for a CT scan that finally confirmed the disease. In June, 2007, at the age of 62, Ms. Gallelli received the diagnosis and underwent a four-hour debulking operation that removed all reproductive and intestinal organs affected by cancer. Subsequent rounds of Taxol and Carboplatin, administered through a surgically implanted port, brought her a remission of 18 months.

She only understood that the disease had recurred because a CT scan showed a hernia. During an operation to repair it, her doctor saw “what looked like sawdust all over — all of which was cancer.” Shocked that the scan had failed to display the malignancy, Ms. Gallelli found the side effects of the second cycle of Taxol and Carboplatin more difficult to endure: painful constipation, the need for blood transfusions, a fall brought on by neuropathies, blood clots and fevers sent her frequently back to the hospital.

With gratitude, Ms. Gallelli records her doctor’s aggressive response to the insidious persistence of ovarian cancer. During a succession of chemotherapies — Topotecan, Gemzar, Carboplatin again (which caused an allergic reaction), and Taxotere — she developed Venous Thromboembolism and a blood clot in her lung, for which an inferior vena cava filter was surgically inserted. Finally Doxil caused such terrible blisters on her fingers and in her mouth and throat — as well as cuts along the heels of her feet — that on the advice of her doctor she temporarily stopped treatment.

In the last chapter of her narrative, dated March 2013, Ms. Gallelli expects to resume chemotherapy. A quick online search informs me that she died seven months later. I wonder if she ever got to hold her book in her hands. I hope she did.

Ms. Gallelli’s case history illuminates widespread frustration at the lack of an early detection tool and at the so-called gold standard medical response. It also explains widespread excitement about new sorts of protocols being developed through clinical trials.

In December 2014, the Food and Drug Administration approved Lynparza to treat advanced ovarian cancer. A so-called “Parp” inhibitor that blocks enzymes involved in repairing damaged DNA, it is the first of several drugs being tested in clinical trials like the one in which I participate. A colleague of mine, one of the first to benefit from Lynparza, is not sure how long her insurance will be willing to pay AstraZeneca more than $10,000 a month for the drug.

Current trials of targeted drugs include patients with and without the BRCA1 and BRCA2 gene mutations associated with increased risk for ovarian cancer. New information on these mutations helps women make difficult decisions about prophylactic oopherectomies. Physicians are also trying immunotherapy which reprograms T-cells to enlist the patient’s body in destroying cancer. A national repository for blood and tissue samples will aid efforts to devise new screening techniques.

The new approaches extending survival seem far superior to the old protocols. I swallow my pills daily at home and only travel to the hospital for tests once a month. Though I am somewhat fatigued and nauseated, the pills have worked for three years and the side effects pale in comparison to the afflictions endured by Ms. Gallelli.

Despite the advances from which I benefit, however, most women with ovarian cancer are still diagnosed with late-stage disease; most will have a recurrence after first-line treatment; and most will die of recurrent disease within five years. Additionally, most will receive chemotherapy intravenously, even though a recent study showed that intraperitoneal chemotherapy, which pumps chemicals directly into the abdomen, would be more effective.

As for those contending with subsets of gynecological cancers, the situation remains bleaker. Carrol, a member of my support group who deals with Malignant Mixed Mullerian Tumor, has been unable to access trials or specialists focused on her condition. “Because such rare diseases do not represent a source of profit for Big Pharma,” she believes, “very limited research is being done, with the result that outcomes are significantly worse than for conventional ovarian cancer.”

In an online conversation about finding a fund-raising slogan for “ovarian, the barbarian, cancer,” one pseudonymous woman suggested “Silent but deadly.” The childhood phrase cracks me up, but it also reminds me that more, much more, needs to be done. This disease is a stinker.


Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer.

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