Ovarian cancer: why don't we ever talk about it?

When I heard the diagnosis of ovarian cancer, I assumed it was a death sentence. Lying on a gurney in a hospital hallway in Indiana, where I live and teach in a university, I concentrated on accepting my impending mortality with equanimity. I remember a moment of extraordinary calm.

My composure contrasts sharply with the often expressed sentiment "why me?" But I never believed that people get what they deserve. Regardless of my efforts to live a responsible life, it never entered my mind that I might be exempt from the common lot. I have known many young and old people with cancer, whose plight convinced me that it could strike anyone, anywhere, at any time. Given the high incidence of cancer in my circle of acquaintance, "why not me?" might have been a more predictable question. Victims, patients and survivors know that cancer just happens, whether because of genetics, lifestyle, diet, ageing or a radically compromised environment.

The unwilled surfacing of this moment of calm seemed astonishingly unexpected and, brief as it was, I wanted somehow to bank on it, to find in it some resource to draw upon through all the hardship to come. I was old enough at 63 to have acquired my share of wrinkles, grey hair, and the comprehension that my case was not tragic, not the tragedy, for instance, of a young woman robbed of her maturity. Should my daughters be diagnosed with such a disease in their early 30s: that would be devastating news, just about the worst thing that could possibly happen. With my two girls healthy and grown and most of my scholarly work done, I could hardly rail against the injustice of my fate.

In various venues, courageous women speak poignantly about ovarian cancer as a chronic and treatable illness with which they continue to live. Statistics, however, tell another, more pessimistic tale. Long-term survival rates have hardly improved since the 1970s because more than 70% of women present with disease spread beyond the ovaries. Even with sophisticated medical care, most of these patients suffer terminal recurrences a few years after diagnosis. "People with ovarian cancer die of ovarian cancer," a blunt doctor explains in a novel by Richard Powers.

What do women experience between diagnosis and death? There were 21,550 new cases of ovarian cancer in the US in the 2009 and an additional 14,600 women died from it [in the UK, 6,500 women are diagnosed with the disease every year, and 4,400 die every year]. It used to be estimated that one out of 70 American women would get the disease, the deadliest of all gynaecological cancers, though recently the number sometimes cited is one in 55. There are very few published personal accounts for them to consult, since for decades, indeed for centuries, women have generally maintained silence about the silent killer. So I began to inquire into the disease, and to write about it. Even at the moment of diagnosis, my age, family history and scholarly habits helped me to accept the disease and then to describe subsequent medical responses.

But I was not prepared for the horrific ordeals many ovarian cancer patients undergo. Acquiescence upon hearing the diagnosis would not sustain me during the six months that followed. Resolute acceptance tangled with dismay, and snarled with depression as I descended into deeper circles of an inferno in which I suffered less from the disease itself and more from grotesque surgeries and procedures performed by the most enlightened practitioners of contemporary medicine.

Yet weirdly, even after those horrific six months, I continued to seek out medical interventions. If I started out sceptical about the current treatments, and soon grew convinced of their barbarism, why did I continue to pursue them?

We have come a long way in the treatment of ovarian disease. Or have we? In 1998, one contributor to an anthology entitled Ovarian Cancer Journeys recounted that she heard a doctor at a nationwide conference declare: "Few ovarian cancer activists exist, because women don't live long enough to become activists." Over the next decade, there was little improvement in survival rates. Put another way, unlike early-detected breast or testicular, colon or prostate cancers, most ovarian cancer cases cannot be cured simply because they are not discovered before the disease has evolved into its third or fourth stages.

A Gynecologist's Second Opinion, published in 2003, opens a chapter on the disease with a sinister warning: "If 'cancer' is one of the most dreaded words in the English language, then for most women, 'ovarian' is the worst adjective to place before it. In all the bad news we sometimes deal with in gynaecology, this is the most frightening."

It is because warning signs and detection devices fail to reveal the early onset of most ovarian cancers that the diagnosis sounds like a death sentence. The leading cause of American and British women's deaths from gynaecological cancers, ovarian cancer exhibits warning signs that are easily missed or dismissed. What woman, after all, does not experience and generally put up with one or several of symptoms including bloating, fatigue, indigestion and back pain?

Discussing frequent delays in diagnosis, one influential study concluded that "women with ovarian cancer do have symptoms in contrast to what is stated in most textbooks and taught in most medical schools". If women and their physicians were educated about early warning signs, they could assign them proper significance and receive more effective treatment: ovarian cancer can be cured when it presents in its early stages.

Seemingly inconsequential, muted signs of the disease are easily blocked out, forgotten, or not experienced at all. The character in Powers's novel Gain wonders: "No warning signs at all. How could that be?" The philosopher Gillian Rose, who had to cope with a chemo-resistant ovarian cancer, answers this question by explaining that her fitness led her initially to overlook nausea and untimely premenstrual tension. Symptoms are often misunderstood because, as one oncologist puts it: "Ovarian cancer is the great impostor – it masquerades as some of the most common symptoms in middle life."

Misdiagnosis can also result from the unreliability of the CA-125 blood test often used to measure levels of ovarian cancer. While mammograms, MRIs, ultrasounds and needle biopsies can discover cancerous growths in the breast before they can be felt by fingers, no reliable screening tool for ovarian cancer exists. Nor does the disease silently advance only in older, postmenopausal women. Rosalind Franklin was 37 when her death from ovarian cancer made her ineligible for the Nobel prize awarded to Francis Crick and James Watson for the discovery of the structure of DNA.

No reliable screening device, no cure for the vast majority of patients; but what about causes? Low parity has been considered a factor or, as it is sometimes called, "poor reproductive performance". Frequent ovulation has been blamed, with some physicians touting the benefits of oral contraception. Asbestos exposure, talcum powder, hormone replacement therapy, and fallout from nuclear testing have all been linked to ovarian cancer, as have a diet high in fat, fertility drugs (or the infertility that caused them to be taken), and a number of the pollutants discussed with respect to other forms of cancer.

Recent research has shown that the genetic markers BRCA1 and 2 account for about 10% of ovarian cancers. But should healthy girls spend their young adulthood worrying about whether or not to be tested for a mutation? A positive result in such a test can trap an individual into the horrific conviction that she is doomed.

A second medical advance in ovarian cancer research, announced in 2010, promises progress in early detection. Dr Karen Lu used the CA-125 blood test over a period of eight years to screen post-menopausal women. No invasive tumours were missed, and most of those found were in early enough stages for successful surgical interventions. Because of Lu's small sample, unfortunately, American women will not receive standard annual testing. A larger British study should appear in 2015. Meanwhile, as some scientists experiment with emerging treatments, others speculate that there may be many different types of ovarian cancer that should be treated differently, and that gene sequencing will provide an approach to each case.

With warning signs easily ignored or misread, and descriptions of the disease's progress marginalised in cancer literature, ovarian cancer – whether or not it is genetic in origin – establishes a series of issues quite distinct from those in breast cancer. No visible, external body part gets sliced off the ovarian cancer patient in surgery. She need not mourn an amputation and ostentatious scarring on her body, nor the loss of an erogenous zone. Nor need she display or conceal the ravages of her cancer. Except for a vertical line of stitches down the belly, the wounds remain inward, invisible, though they can rob younger women of their fertility. Many breast cancer survivors today believe that if you've got to have breast cancer, it's a good time in history to have it. The same claim cannot be made about ovarian cancer.

In her book Blood Matters, about illness and heredity, Marsha Gessen calls ovarian cancer "breast cancer's poor neglected cousin", in part because breast cancer is imagined as a disease that can be overcome, whereas ovarian cancer remains "intractable, unimaginable, unspeakable". "You hear about breast cancer all the time," one ovarian cancer patient points out, "but you never hear about ovarian cancer." According to one British patient: "For the average person who is not a hypochondriac, or a reader of medical journals, ovarian cancer seems one of the best-kept secrets in the medical world."

There are very few personal accounts of dealing with ovarian cancer, not only because it is difficult to narrate progress within a cheerful recovery framework, but also because such stories would inevitably address still stigmatised (and thus hidden) bodily afflictions. Who, in search of inspiring or comforting assurances, wants to buy, much less read, a yucky downer? Breast cancer, which has received much more attention and research money, and afflicts many more women, has its own patron saint, St Agatha, who offers her sliced-off breasts on a platter.

To my knowledge, there is no patron saint of ovarian cancer, and most people could not name the colour of its ribbon (teal). The state of medical responses to ovarian cancer corresponds to the state of medical responses to breast cancer half a century ago.

Of course, no one person can represent all the women struggling with ovarian cancer. Nor can I, as a privileged professor at a university that provides me job security as well as health benefits. Those who credit their survival of ovarian cancer to "positive thinking, trust and hope" may judge me defeatist, or worse, complicit in my illness. Yet after my diagnosis, and despite my hunch about the disease's fatality, I did undergo all the operations, therapies and interventions specialists advised. Given my love of life and of the people in my life, it seemed wrong simply to submit to the cancer's inevitable progress.

Motivated by a desire to tackle a writing problem that Virginia Woolf believed the literary women of her generation had failed to solve – telling the truth about the experiences of the female body – I sought in writing about my illness to record precisely what I could not or would not say to most of my family and friends. Too often, it seems to me, squeamish euphemisms glamorise the fight against cancer and inhibit efforts to deal with suffering and death. Why I can report on a computer keyboard what I cannot bear to say aloud remains a mystery to me, but so it goes.

Women need to heed the muted or misunderstood symptoms of ovarian cancer, and to agitate for early detection tools. We must save our successors from an undetectable and then unfixable condition that continues to threaten the health and welfare of future generations.

This is an edited extract from Memoir of a Debulked Woman: Enduring Ovarian Cancer by Susan Gubar, published by WW Norton on 4 September, price £16.99.

GuardianUK