"Survivors in advance": Why do women who have removed their breasts tell about it
Olga Lukinskaya
Perhaps one of the most important achievements of today's medicine. - reducing the taboo of talking about a number of diseases, including oncological ones. Recently, accounts have appeared on social networks of those who did not have cancer, but had a high risk of it - and they performed a preventive operation. Such people are called previvors - "survivors in advance," unlike survivors, who have already survived cancer and its treatment. Active previewers are not only stars of Angelina Jolie level, but also ordinary women who keep blogs, popular social media accounts and participate in talk shows on television about cancer prevention, especially breast cancer. We tried to figure out why they talk about themselves and how it can help others.
Forty years ago, the word "cancer" was uttered in a whisper, and there were no months of awareness and multi-colored ribbons as symbols of the fight against tumors. That all changed in 1974, when US First Lady Betty Ford spoke openly about breast cancer and mastectomy - and made a revolution, thanks to which the stigma of cancer began to decline. People who survived a malignant tumor are increasingly not shy to talk about the disease itself, its treatment and the difficulties that they had to go through. On the one hand, it can help other patients with the same diseases, on the other - to increase awareness, make someone else see a doctor for examination or understand what a sick person is experiencing.
Many types of cancer, especially if detected in a timely manner, are well cured, and the word itself has ceased to be an unequivocal death sentence - but, nevertheless, it causes fear and is at first shocking. In addition to the disease itself and treatment, often giving severe side effects, it is necessary to solve a variety of problems: financial ones due to expensive treatment or disability, and psychological ones like depression and anxiety. Relatives and friends often do not know how to behave, how and what to talk about with the person who was diagnosed with cancer. This is a time when family support is critical - and, unfortunately, at this moment many families do not stand the test of strength.
As science progressed, it became clear that in some people the risk of certain tumors is higher — this can be determined by examining heredity and environmental factors and conducting a genetic analysis. For example, women whose immediate relatives had breast cancer are shown the analysis for BRCA1 and BRCA2 mutations. The presence of BRCA1 increases the risk of breast cancer up to 55-65% (and according to some data up to 87%), and such patients may be recommended preventive removal of the mammary glands - as did, for example, Angelina Jolie. Perhaps the actress has become the most famous "prior", but the movement of "survivors in advance" appeared earlier. Many women after prophylactic operations talk about their experiences, including misunderstanding on the part of friends, and that they made the right decision.
Those who have made preventive mastectomy go for “paranoia” and “hypochondria”, and breast removal for cancer prevention is compared even with eye removal to prevent cataracts.
Of course, in relation to other types of cancer, you can take certain measures: to quit smoking, to lead a healthy lifestyle, to be examined as often as possible. But with a high genetic predisposition, every such examination is a fear that doctors will find a tumor. For most types of dangerous tumors, preventive surgeries are not available: a healthy person’s lungs, liver or colon cannot be removed to prevent cancer — the same one who has a very high risk of breast cancer, the operation allows to prevent it completely — and live peacefully. Therefore, prioritizers are primarily women who have undergone prophylactic mastectomy.
Sixteen thousand people signed to instagram Paige Mor - and she says that she doubted her choice and was upset, but now she is convinced of the correctness of the decision. She found out about a malicious mutation at 22 years old, and she was offered several options for action, including enhanced surveillance, in which MRI and other examinations should be done every six months. It sounds easy, but according to Page, when you have the highest risk of breast cancer, this strategy turns into a daily fear: "You wake up and think that today you will develop cancer." Therefore, she chose a different approach - the operation. Stephanie, who also underwent preventive mastectomy, discusses in her blog that it is not life that “happens to us,” and we can actively build it in many ways. If you have a high risk of breast cancer, then a mastectomy is likely to have to be done sometime; then you have to live the rest of your life in fear of a cancer recurrence - and, probably, die from it.
It would seem that the ability to prevent a terrible disease is the most important achievement of science, but pre-payers are often criticized. According to Dina Roth Port, author of the book Previvors, some breast cancer survivors consider the movement to prevent the disease as offensive and distract attention from them. Those who have done preventive mastectomy go for “paranoia” and “hypochondria”, and breast removal for cancer prevention is compared even with eye removal to prevent cataracts — an obvious exaggeration, because the absence of the breast and the eye is clearly associated with a different quality of life. It is unlikely that someone is happy with the prospect of breast removal - but there are no other methods of prevention with the same effectiveness. BRCA mutations also increase the risk of ovarian cancer, therefore, in some cases, a preventive surgery is performed to remove them - which is also often to be condemned.
It turns out that talk of mastectomy easily passes from the plane of medical advances to the plane of objectification - and doubting the choice of a woman to remove the breast, surrounding essentially condemns prospectors for putting health and life above beauty standards. Compare: people with high risk of melanoma, who refuse from the beach, do not go out without sunscreen and prophylactically remove suspicious moles, they are also a kind of prevailors, but they are not publicly criticized. Is it possible to condemn women who do not want to repeat the path of their mothers and grandmothers, or is it too early to leave the children? Of course, the decision must be balanced and justified, it must be taken by the woman together with the doctor - but whatever that decision may be, it deserves respect. The openness of pre-payers, their stories about their experiences, including the reactions of others, help to normalize the situation and tell those who are faced with the choice that they are not alone.
Photo: Personalized cause