Are we creating a scare amongst the worried well

As a doctor, one must always remember an important component of the Hippocratic Oath: “Primum non nocere”, or ‘Do not harm’.
Angelina Jolie is a celebrity, and her brave decision to go public with her treatment received wide coverage in global media. This surely has helped raise awareness about genetic testing for breast cancer. However, there is a fine line between advocacy and creating a scare.
The recent media effect has tremendously increased anxiety amongst the vast majority of the ‘worried well’ who are NOT at increased risk for genetically-induced breast cancer. Over the past months since Jolie announced her ‘brave decision’ to the world, a number of friends and patients have asked me if it would be a good idea to get the genetic test done, ‘just in case’.
The Facts
Compared to the Western world, there is very little awareness in India about genetic testing for women considered to be at high risk of developing breast cancer. A number of women with average risk (one member of the family affected with breast cancer over the age of 40) get genetic testing done, which is most unnecessary and can cause unnecessary alarm.
It is vitally important to remember that only 5-10% of breast cancers are likely to carry faulty or abnormal genes (BRCA1 and BRCA2). Those testing positive for these faulty genes have a significant lifetime risk of getting breast cancer, but it is equally important to remember that not everyone who tests positive for BRCA gets breast cancer. Nonetheless, risk in this small subgroup is very high, so the test should only be done when there is a significant family history of breast cancer.
Significant family history of breast cancer includes (high-risk group):Definition of close relatives: mother, father, sister, brother, daughter, son, aunt, uncle, grandmother, grandfather, granddaughter, grandson, niece, nephew
• One or more close relatives who have had breast cancer before the age of 40;
• Two or more close relatives who have had breast cancer at any age;
• Close relatives who have had breast cancer and others who have had ovarian cancer;
• One close relative who has had breast cancer in both breasts (bilateral), or who has had breast and ovarian cancer;
• Male relative who has had breast cancer;
• Ethnic background where faulty breast cancer genes are more common – for example, people with Ashkenazi Jewish ancestry
There are several options, other than the double mastectomy Jolie opted for, for treatment.
Risk-Reducing Surgery (Bilateral mastectomy and immediate reconstruction)
• Having a double mastectomy significantly reduces the risk of developing breast cancer – in fact, this method offers the best chance of risk reduction – by well over 95%. It does not, however, completely eliminate the risk as some breast tissue is still left behind even after complete removal of breasts.
This drug has long been used to treat hormone receptor-positive breast cancers. Tamoxifen has recently been licensed for use in the US and UK for risk-reduction in high-risk women. Taken daily for five years, it substantially helps reduce breast cancers occurring
due to a faulty BRCA2 gene by up to 50%. However, this modality has not gained widespread use because of its potential side
effects – thrombo-embolism, deep-vein thrombosis (DVT), and a small risk of endometrial cancer. If Tamoxifen is used, it is usually recommended in younger women as these potential side effects are more often seen in older women, hence best avoided in women
over 45.
Close Surveillance
This option does not prevent breast cancer, but helps detect breast cancer very early. It is done through a combination of MRI of the breasts and bilateral mammograms alternating every six months from the age of 25 or ten years earlier than the age at which the cancer was diagnosed in the youngest member of the family.
The decision to have preventive mastectomy is not easy. It is a brave and major life choice for that individual. Whether or not to get it done is highly personal – there are a number of social and marital pressures and, equally, many apprehensions about getting preventive double mastectomy and immediate breast reconstruction in India.
Most women are unaware, and those who are aware that they are at high risk are not adequately counselled about all the options available. Breast cancer genetics clinics and centres undertaking risk-reducing surgeries are few and far between in our country.
In light of the recent ‘Jolie effect’, it is critically important for people in India to be empowered with all the facts so that the decision to get a genetic test is made judiciously. The ‘emotional drive’ to get the test done ’just in case’ should be resisted as a decision made in a rush can potentially have far-reaching, irreversible bearing – not just upon the individual taking the test, but the entire family.
Whatever the risk, a healthy diet and regular exercise can minimise the chances of developing breast cancer. As breast cancer cannot be prevented, it would be prudent to be ‘breast aware’ to ensure early detection, which is the only way to fight breast cancer.