Angelina Jolie's Double Mastectomy Disclosure May Be More Harmful than Helpful
There has been much recognition of Angelina Jolie's public revelation that she has had a prophylactic double mastectomy and reconstructive surgery to avoid breast cancer. She says that although the decision was hard, she made the right choice for herself; that she looks good and feels whole, again. As a gorgeous famous woman and sex symbol, her public sharing is seen as a generous move towards destigmatising breast cancer and a gracious concern for women who might face similar dilemmas.
But what does "similar" really mean here? We think that Jolie has inadvertently added to the notion that breast cancer is a genetic disease, which is not helpful for most women. In reality, her particular story of genetic breast cancer has relevance for very few women, and to the degree that this relevance is not understood, her disclosure may be more harmful than it is helpful.
Jolie has had Hollywood-style access to the best medical treatments that money can buy, and to incredible publicity given her fame. It must be recognised, however that most women across the globe do not have access to the same level of health care that was and is available to her. We will take the publicised opening she has created and use breast cancer to shine a clear lens on the environmental hazards and damage that play a role in compromising the health of all of our bodies, along with the planet.
Jolie has the BRCA1 gene mutation. This mutation is extremely rare. It most often is found in Ashkenazi Jews. Genetic mutations such as this make up about five to ten percent of breast cancers. There is harm in not recognising the true rarity of this mutation because breast cancer is not a uniformly genetically inherited disease. And even for those of us with the BRCA1 mutation, and both of us - including us, mother and daughter - with a BRCA mutation, the mutation is a pre-disposition that greatly increases risk, but does not completely determine the disease. Triggers are often needed to activate the disease - and these are largely environmental. You can have the BRCA mutation and not get breast cancer. And, most importantly, youcan not have the BRCA mutation and still get breast cancer.
We are not biological/genetic determinists nor environmental determinists, because neither can be fully understood as cancer risk in isolation from each other.
Breast cancer is complex and it is "man-made" (See Zillah's discussion of this in her Man-Made Breast Cancers, 2001). Nothing about it is neutral or singular. There are multiple kinds of breast cancers and many lenses - social, cultural, medical, demographic - through which to define and classify these types. In such a plural disease, there are many directives that can make sense. The breast is already culturally and psychically filled with meanings. Culture and its practices are always in place and define treatment protocols - detection and treatment are never merely scientific.
Many of the dominant and popularised discourses of breast cancer parade themselves as scientific and dis-inform as much as they inform, and create false closure and dichotomies when openness and complexity is needed. Much caution is needed in these discussions to avoid unnecessary melodrama, and honest complexity is more helpful to sort out both one's fear and one's choices.
I have lost two sisters at a very young age to breast and ovarian cancer and have suffered the pain and agony of these diseases myself. And yet, Sarah and I think that breast cancer suffers from too much exceptionalism as a disease. More than one woman dies every minute across the globe from causes related to pregnancy and childbirth. Poverty prevents most of the globe's women from having access to cancer screening and the treatment options needed.
You are not born with breast cancer - so there needs to be a focus on the environments that trigger and enable it to grow and spread. Breast tissue appears to be more vulnerable to damage from carcinogens, pesticides, radiation, biopsy needles and so on. There is some evidence that breasts may be more susceptible to carcinogens than other parts of the body.
Individual detection is important. Individual options are key. But more important than either of these is a determination to focus on the environmental and changeable determinants of cancer. Access to detection and to treatments also must be put more fully on the agenda. This demands a politics that addresses poverty, the drug industry, health insurance, and more.
Breast cancer, rather than seeing it as simply an individual problem with an individual solution - which it is - also needs to imagine the political/biological problem created by the food and tobacco industry, the militarised and corporatist complex and industrial polluters. Use the breast as an interior site for the exterior globe and its coming environmental destruction.
What of the women in Congo and Iraq and Afghanistan who suffer the destruction of their environments in war? Without medical care their bodies are endangered to everything, including breast cancer. Here in the US, women without health insurance have little chance at preventive or diagnostic care, let alone a $3,000-test for the BRCA gene. The cost of reconstructive surgery is also often well out of reach.
Aftermath of mastectomy
Let us also be reminded that women can choose widely about how they deal with the aftermath of mastectomy. I am remembering the intrepid black lesbian feminist Audre Lorde who, after her mastectomy in 1978, bravely rejected the use of a breast prosthesis (that came in only white flesh colour at the time). She thought that wearing a prosthesis was a form of lying, of covering up the trauma of breast cancer. As she wrote in The Cancer Journals, she would be a militant one-breasted woman rather than practice what felt like self-deceit. She wanted breast cancer to remain visible. Of course, lumpectomy has sometimes changed the issue of (in)visibility.
I have had a double mastectomy and reconstructed my chest and cleavage with my own muscle rather than through reconstructive surgery. Two of my closest friends have done the same. Sarah, who has annual MRI breast screenings at 28 years old, continues to hope for new breakthroughs both in terms of disease prevention and treatment, and reconstruction. There are too few choices for all breast cancer patients, and yet also many personal narratives to be built and listened to.
And what of public health? There remain bigger issues in breast cancer and public health than ensuring access to testing for the BRCA1 mutation. Other interventions - access to screenings, ensuring cleanerenvironments, establishing health care networks - will potentially save more lives than BRCA testing. So let us think bigger than the breast. Think about a world when corporations make money by preventing disease instead of screening for them. This means changing the medical and pharmaceutical industries of and for profit. This means protecting all our environments from harm.
Let us really get serious about preventing breast cancer. This means ending industrial farming with its insecticides and herbicides. This means addressing and redressing climate change and global warming. This means no fracking for natural gas and contaminating water supplies.
Dream and hope for vaccinations for all everywhere; mosquito netting wherever needed, health screenings from mammograms to pap smears free of charge. Treatments will be available to all who need them. Healthy bodies will be a human right. Maybe in this world we will no longer need either pink or red ribbons.
We have travelled from Jolie's breast cancer to the health of the globe. Fellow friends and activists Eve Ensler and Sandra Steingraber make similar cancer journeys, but from different body parts. Meanwhile, Sarah and I with our BRCA1 mutations remain determined to de-essentialise breast cancer and work towards a radically improved public health.