Off my chest
- Kathy Malherbe
- 13 Jun 2013 01:31 (South Africa)
There’s more to breast cancer than Angelina. Her call for genetic testing and a double mastectomy has done little for breast cancer awareness. It’s a strong statement, one that is likely to have Jolie followers up in arms. But these are some of the issues around breast cancer that were lost in the Angelina hype.
Only 5% to 10% of women carry the BRCA gene. BRCA1 and BRCA2 are human genes that belong to a class of genes known as tumour suppressors. Mutation of these genes has been linked to hereditary breast and ovarian cancer.
Yes, a woman’s risk of developing breast and/or ovarian cancer is greatly increased if she inherits a deleterious (harmful) BRCA1 or BRCA2 gene mutation. Men with these mutations also have an increased risk of breast cancer.
According to the Breast Interest Group of Southern Africa, BRCA genes are found in all people. When functioning normally, these genes supress the development of cancers. However, when BRCA genes malfunction due to changes called mutations, women have a very high chance – up to 90% – of getting breast cancer during their lifetimes.
However, according to Dr Carol-Ann Benn, one of South Africa’s top breast cancer specialists and surgeons, says there is no evidence that a preventative mastectomy – the removal of a noncancerous breast – will completely eliminate the risk of developing breast cancer.
“Preventative mastectomies only decrease the risk of cancer by between 85% and 97%. Nothing can completely remove the risk of developing breast cancer. The procedure lowers your risk of developing cancer, but does not eliminate it,” Benn said.
Probably less than 1% of that 5% who have the BRCA gene has access to genetic testing, or can afford it. Cancer test developer Myriad Genetics, which has the patent for BRCA testing, earns 74% of its revenue from the kind of genetic testing. Which means that they can charge $3,000 a pop.
Then there is the complicated helix of genetic privacy to unravel and the need for laws to protect genetic discrimination. Those who do have access to genetic testing are often hesitant to do so for fear of it appearing on their medical records.
Not only are women damned by their DNA health-wise, if the BRCA gene appears on your medical records, qualifying for life insurance becomes a serious problem. In the US, the Genetic Information Nondiscrimination Act (GINA) is Federal law. But GINA only prohibits discrimination based on genetic information in relation to health insurance and employment. The law does not cover life insurance, disability insurance and long-term care insurance.
The thin excuse for leaving it out of the gazetted Protection of Personal Information Bill in 2009 in South Africa was that issues around genetic privacy are all “relatively new”.
That aside, Jolie’s actions and revelation fail to help women who fall in the “at risk” sector of the population or, for that matter, all women.
At a press conference, Jolie said she had been “very happy just to see the discussion about women’s health expanded and that means the world to me”. She also said it was important for her that other people knew this was available.
Other people? Considering a prophylactic double mastectomy will set you back around R65,000 and breast reconstruction as much as R85,000, the “other people” is probably a thimbleful of high-net-worth individuals.
For those on a medical aid scheme, various criteria have to be met, apart from the presence of the BRCA gene before the scheme will considering covering it.
Each year over one million women are diagnosed with breast cancer and 95% of them do not carry the BRCA gene. Breast cancer and cervical cancer dominate the global statistics for the number-one killer of women. The incidence has increased in undeveloped countries by 5% per year and accounts for three quarters of the total deaths from this disease. Many women in these countries have to deal with the lack of screening facilities, long delays from the time of diagnosis to surgery and limited access to treatment.
And then there is the stigma. A doctor from Pakistan relates the story of a father who would not allow his daughter to see a doctor until after her wedding six months later, although she had a large lump in her breast. He felt the prospective husband would see her as “damaged goods” and not marry her.
The word prophylactic doesn’t exist in many women’s vocabulary.
According to Dr Peter Johnson, chief clinician at Cancer Research UK, “For most women, genetics will not play a big part in whether or not they get breast cancer. The majority of women considering their breast cancer risk should focus on things such as reducing stress, a healthy lifestyle, eating a balanced diet, keeping a healthy weight and limiting alcohol intake.”
Elsabe Schlechter, a breast cancer survivor, advocate of early detection and supporter of women who have undergone breast surgery and treatment says, “I believe stress is a defining factor in the development of breast cancer and it’s not always easy to avoid stress when you are a women with a career, looking after a family and often carrying the emotional load in the home.”
She cites 32-year-old Zoleka Mandela, the former president’s grandchild, as a prime example. She had more than her fair share of trauma, loss and stress preceding her diagnosis. She lost her 13-year-old daughter in a car accident on the eve of the soccer world cup and the following year her baby was born prematurely and died four days later. Still struggling to get over her double tragedy, she discovered she had stage-2 breast cancer.
Zoleka, though, has reached a turning point in her life. She is determined to become an ambassador for the disease that robbed her of her breasts. She is going to help other people fight the illness by advocating early detection and helping women overcome the fear.
Dr Jenny Edge, a surgeon specialising in the management of benign and malignant breast cancer disease, spoke at the 17th Reach for Recovery Support Conference in Cape Town about the causes of breast cancer, existing diagnostic techniques and trends in breast cancer management. She said, “despite extensive research, the cause of breast cancer is not known. Although BRCA gene problems have been identified as one of the causes, they only account for a small percentage of all breast cancers. Most women don’t have a BRCA abnormalities – even those with a strong family history of the disease.”
Bearing this in mind, Edge feels that there has been so much research in laboratories around genetics that the emphasis should move to looking at patients themselves.
Advocates of breast cancer awareness – surgeons, specialists, NGOs, support groups and representatives from government – agree that the most effective way of reducing the incidence of breast cancer is through early detection and, who better to carry the mantle than breast cancer survivors. “They are living proof that cancer can be treated and are the most persuasive advocates of regular self-examination and screening.”
Jolie has been an excellent Goodwill Ambassador for UNICEF. She has respect and a voice. A voice that comes with a huge responsibility. But she is no stranger to the limelight for a number of reasons both positive and negative.
Is there not a danger that the nature of the disclosure could lose the message in its sensationalism? It did not come across as a quiet and deeply felt experience she needed to share. Jolie had the world as her stage to include some hard facts about breast cancer, instead of what amounts to a 5% soundbite in the complicated discussion of breast cancer.
Perhaps Jolie could have shared the fact that 95% of women who develop breast cancer do so for unknown reasons. Yes, stress, lifestyle, diet, smoking, a strong family history, older women on hormone replacement therapy, women who are pregnant for the first time over the age of 35 and women who have never had children who appear to be at a higher risk may all play a role but, in reality, experts and specialists know how breast cancer develops but not why.
Or that a double mastectomy is not a magic panacea. Some women who have double mastectomies have a recurrence in the breast tissue that remains. It is hard for surgeons, no matter how skilled, to remove every single cancer cell.
Perhaps that there is nothing, nothing, nothing glamorous about a mastectomy to remove cancerous growth. It is mutilating and is a deep psychological assault on femininity. Millions of women have mastectomies in an attempt to save their lives.
However, there is a plethora of other factors to take into consideration for a newly diagnosed woman: the diagnosis shock, the fear of mortality, the stigma, the pain and discomfort and possible lymphedema that comes with the removal of lymph nodes, the fear of leaving children behind, the hormone therapy, radiation and chemotherapy.
Breast cancer patients are, as a rule, unable to save their nipples. The possibility of a rogue cancer cell being in the nipple area is too great. They must make do with plastic surgery and tattoos. There is a chasm of difference between prophylactic mastectomy surgery and a mastectomy after the diagnosis of breast cancer.
Without detracting at all from what was a life-changing decision by Jolie, bravery may not necessarily be the reason women undergo elective or non-elective mastectomies. It’s called fear. And you can almost smell it on a newly diagnosed patient. Fear itself may even contribute to the absence of early detection and a life-saving intervention.
At the 17th Reach to Recovery International Breast Cancer Support Conference in Cape Town two months ago, South African deputy health minister Gwen Ramokgopa said in many cases women were too busy looking after other people to look after their own health.
There is also a huge fear about getting diagnosed. This, coupled with poor or non-existent screening programmes and often a deep-rooted suspicion that the disease is a “bewitchment” because of sin, means that many cases of breast cancer were often presented at an advanced stage – in some developing countries over 80% of cases are presenting at a stage where cancer is incurable.
Ramokgopa describes it as a “self-fulfilling cycle because we have people tell us over and over again: ‘If I have cancer, it is not treatable – so why would I want to know early? I’d rather be happy and go as long as I can before I know.’ So they don’t go for treatment and they die, and then people in their communities think that cancer can’t be treated,” she said.
As one of the journalists covering the conference, I interviewed eight breast cancer survivors. Not one carried the BRCA gene. Each one was humble, brave and strong, devastated by their surgery but getting on with life. Their surgery was private and deeply personal. Every single one of them was alive because of early detection through self-examination. Each one was working quietly in their communities educating, supporting and preaching early detection of breast cancer, overcoming stigma, fighting for access to treatment and sharing the strength of their spirit. They were all champions for the fight against breast cancer and united in their goal to help others. They were all in touch with reality.
Angelina, we salute your personal decision to have a double mastectomy. You had every reason to act: the gene and a strong family history, a mother and aunt lost to the disease. You are brave, you are strong, you are phenomenally influential. The world wishes you well. But you also have a powerful voice. Please use it to advocate early detection.
Announce to the other 95% of women in the world who don’t have the BRCA gene and who are at risk of developing and even dying from breast cancer, that self-examination takes five minutes in the shower once a month. Urge them to go for regular mammograms. Tell them it can save their lives.
Ramokgopa put it in a nutshell: “If there is a problem in the world that presents itself as an opportunity for women to stand in solidarity to resolve, it is breast cancer.” DM