A reader mentioned she regularly is faced with “people’s…recommendation for how to live life as a menopausal woman at increased risk for ovarian cancer.” Others’ awareness of her risk, like illness and even pregnancy, has made her body public domain.
Any reader of Susan Sontag (Illness As Metaphor), has thought about the ways language, society and culture can work together to define a person by the disease he or she suffers or to blame a person for his or her disease. Cancer in particular – so frightening and beyond our control – is like a blank slate on which a society smears all its fears and fantasies. I would guess that women-only cancers attract even more complicated hopes, desires, disappointments and other societal debris. It all adds up to seeing a woman cancer patient not just as responsible for her illness but as her disease rather than a person with an illness.
Similarly a daughter of a woman with ovarian cancer must work to see herself and the rest of her life as something other than an ongoing risk. Quality of life is most frequently discussed when considering treatment alternatives for a patient, not usually when discussing the futures high-risk family members. But learning to integrate a high-risk status into you life is also a quality of life issue.
Today genetic information can turn our ability to predict the chance of future health problems into a liability. You are BRCA positive therefore you must: have a prophylactic oophoroectomy or mastectomy, withstand menopause without hormone-replacement therapy, undergo regular stress-inducing screening tests. But just because you can spend the rest of your life accessing everything medical science has to offer in the way of prevention doesn’t mean you should.
Women at greater risk for ovarian cancer can use birth control pills to possibly lessen their chance of developing the disease, avoid hormone-replacement therapies, have a bilateral oophorectomy, and/or make sure to have biannual CA-125 testing and pelvic ultrasounds. But not only do none of these measures provide a 100% guarantee against disease, each introduces new risks.
Any woman at high risk for ovarian cancer has the right to decide for herself whether a measure of prevention is in her interest. She has the right to decide she doesn’t like taking birth control pills because they could increase the chance of other cancers and/or heart disease, because they make her feel crazy, or because she just doesn’t like taking synthetic hormones. She has the right to take hormone-replacement therapy because her hot flashes are like being turned intermittently into a blast-furnace, her insomnia is making her moody and irritable, or vaginal dryness is interfering with her sex life. She has the right to avoid a surgical procedure and general anesthesia. She has the right to keep her ovaries and the protection (via estrogen) they provide against other diseases such as osteoporosis. She has the right to choose meditation and acupuncture and herbal remedies over all that western medicine has to offer. She has the right to live her life as she wishes without being blamed for not doing “enough” to prevent cancer.
She has the right to be a person not a risk.