By Clara Gaff, Walter and Eliza Hall Institute and Clare Scott, Walter and Eliza Hall Institute
Angelina Jolie’s recent announcement about her double mastectomy likely caused many women to think about their own chance of developing breast cancer. But before you rush off to have a bunch of possibly unnecessary tests, take a deep breath and read on.
When celebrities such as Jolie and Kylie Minogue talk about their personal experiences, the statistics about breast cancer risk suddenly become very real. This seems to be particularly true when those celebrities are young women.
Media reports of Kylie Minogue’s breast cancer, for instance, led to a 40% increase in overall bookings for cancer screening within two weeks.
“Faulty” genes and other risks
In the New York Times op-ed where Jolie made her surgery public, she spoke about the “faulty” gene that can cause both breast and ovarian cancer. The way these genes (BRCA1 and BRCA2) are sometimes described can be confusing because, usually, they help stop cancers from developing.
Everyone has two copies of BRCA1 and BRCA2. But, in some people, like Jolie, one of the copies has a fault and doesn’t work properly to prevent cancer. The result of inheriting a faulty copy of either BRCA1 or BRCA2 is a high risk of developing breast and ovarian cancer at younger ages than usual.
Even though all women have some risk of being diagnosed with breast cancer, most of us are not in Jolie’s situation. In fact, roughly ten out of every 11 women not carrying one of the gene mutations won’t ever develop breast cancer.
Most breast cancer is diagnosed in women older than 50. For this reason, and because breast cancer is one of the more common cancers, Australian women over 50 are encouraged to have a free mammogram every second year through the BreastScreen program.
We now know more about the factors that can increase breast cancer risk. Some of these can be changed, for example by drinking less alcohol and avoiding weight gain after menopause. Cancer Australia has an online risk calculator you can check out.
Family history also plays a large part, but breast cancer is quite common, so many people have a relative who has had it.
The National Breast and Ovarian Cancer Centre describes women who have not had breast cancer as being in one of three categories based on how many of their blood relatives on the same side of the family have had breast cancer and the age at which their cancer was diagnosed (as well as a few rarer features).
What you need to do
Media coverage of a celebrity’s experience, a friend’s revelation that she has cancer or turning the same age as a close relative when she was diagnosed can provoke quite a lot of anxiety about the illness. People respond in different ways to these feelings with some actively seeking testing and check-ups, while others avoid information for fear that it will make them feel worse.
What you need is good advice tailored to your own situation so you can avoid the harms from too many unnecessary tests or too few beneficial ones.
The first step is to have an initial assessment through a general practitioner or the Cancer Helpline (13 11 20). They will ask you questions about your family’s medical history and suggest the appropriate next step based on your level of risk.
Women with a high-risk family history can be referred to a family cancer service, where medical professionals and genetic counsellors provide specialised advice and information about inherited cancer risk, testing and management options. These services are in public hospitals so there’s no direct cost to the patient for a consultation.
About one in 1000 women has a faulty BRCA1 or BRCA2 gene. Testing to find an error in these genes is usually performed through a familial cancer service, either on women with breast or ovarian cancer and a high risk of having inherited cancer (rather than it occurring by chance alone).
The test, which is paid for by the service, costs approximately A$2500, but is very unlikely to be informative for other women. If a gene mutation is found in a woman with cancer, her relatives can be tested to see if they’ve inherited it too.
Although testing sounds straightforward, it can have a large impact on those undergoing it. And this impact is often not only on the person tested but also on her or his children, who – like Jolie’s biological children – may learn they have a risk of inheriting a tendency to develop breast or ovarian cancer.
Genetic counselling helps people prepare for the potential emotional and social consequences of testing and provides support as needed afterwards. Medical advice provides options to lessen the chance of developing breast and ovarian cancer, and for early detection.
Choosing the right path
Jolie said that surgery to reduce her risk was the right option for her. After discussion with their doctors, some women with BRCA mutations do choose to go down that path. But others prefer to have regular examinations and mammograms.
Some women at high risk are also eligible for screening by MRI. And hormone treatment with Tamoxifen is another option to reduce risk.
Each of these options has pros and cons that need consideration. Women with BRCA mutations also have a higher risk of ovarian cancer and are advised to have their ovaries and tubes removed (for example, around the age of 40) as there’s currently no effective way of detecting ovarian cancer early.
The decision to have surgery is a very personal one and should be made after full discussion with specialists. Risk management clinics provide this service to women with BRCA mutations.
Surgery and breast reconstruction is covered within the public hospital system in Australia when performed to reduce a high risk of breast cancer. But the majority of women do not have a risk high enough to warrant surgery.
Jolie finished her piece by saying that the challenges we can take control of shouldn’t scare us. Remember that control is as much about not pursuing unnecessary tests and procedures as it is about doing those that are beneficial.
Jolie clearly obtained information about her personal risks and options, and then made difficult decisions based on her own values and circumstances. It’s important to remember that her situation is a relatively uncommon one and many women wouldn’t need to make the same choice.
Instead of being blindly followed, Jolie should be seen as a model for having sought to better understand her risk, received medical help to become aware of her options and then made a decision that best suits herself and her family.
If you are worried about your risk of developing breast cancer, take the online risk assessment test or contact the cancer helpline, then seek guidance from your doctor.
Clare Scott receives funding from Cancer Council Victoria and the Victorian Cancer Agency (Sir Edward Dunlop Cancer Research Fellowship). She is affiliated with Cancer Council Victoria, as well as The Royal Women's Hospital and The Royal Melbourne Hospital where she is a consultant medical oncologist.
Clara Gaff does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.
This article was originally published at The Conversation.
Read the original article.