Breast Cancer

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If Angelina Jolie lived in Mala Malaysia, ysia, wha what t wou would ld her options be? Find out what the experts have to say about breast cancer prevention By Professor Dr Teo Soo Hwang, Professor Dr Nur Aishah Mohd Taib, Professor W Woo oo Yin Ling, Professor Dr Thong Meow Keong and Ms Yoon Sook-Yee Sook-Yee

n 14 May 2013, Angelina Jolie made global headlines when she wrote an article for the New YorktoTimes reporting she had preventative double mastectomy reduce her risk that of breast cancer, cancer , upon finding that she carried an alteration in the breast cancer gene, BRCA1.

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Angelina’s mother had developed ovarian cancer at the Angelina’s age of 46 and was found to have a genetic mutation on the BRCA1 gene. She had a 50 percent chance of inheriting the gene from her mother, mother, and unfortunately, she did, thus giving her an 87 percent chance of developing breast cancer and 50 percent chance of developing ovarian cancer.

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FEATURES If Angelina Jolie lived in Malaysia, would she have come out so publicly to talk about her genetic status and her choices? The BRCA1 and BRCA2 genes are not new. However, However, genetic testing is expensive, there is lack of protection against genetic discrimination and the lack of awareness are reasons why testing has been very limited in Malaysia. These services are only available in two centres in Malaysia – Cancer Research Initiatives Foundation (CARIF) in collaboration

reconstructive surgery and had a partner who fully supported her decision. She felt no loss in her femininity. Preventative double mastectomy is not the only choice. For many, the best option may be to undergo intensive screening with mammogram and MRI and if breast cancer occurs, it can be caught at an early stage and treated effectively. Women may also choose to take tamoxifen or raloxifene to reduce their risk of breast cancer.

with Universiti Malaya (UM) and Kuala Lumpur Hospital.

Women Wo men can also choose to have preventative removal of ovaries as this will reduce the risk of both breast and ovarian cancers. There is no effective screening for ovarian cancer and the survival is generally poor. poor. Angelina has chosen not to have her ovaries removed, at least for now.. The decision to remove healthy ovaries now is a hard one, because of the menopausal-like side effects.

Since 2003, CARIF and UM have offered genetic counselling and genetic testing for breast cancer patients through the Malaysian Breast Cancer Genetic Study and since 2008, this has been extended to ovarian cancer patients through the Malaysian Ovarian Cancer Genetic Study. Study. In both of these studies, studies, breast and ovarian cancer patients are provided information about their chance of having an alteration in the BRCA1 and BRCA2 genes. Angelina Jolie had protection against genetic discrimination and could freely talk about her genetic status and her medical choice. Many women all over the world would have benefited by the increased awareness and the encouragement afforded by her actions. However, However, her bravery in speaking out would be lost in Malaysia if we don’t act by ensuring that women have easier access to genetic counselling and appropriate genetic testing and there is protection against genetic discrimination.

If Angelina Jolie lived in Malaysia, would preventative double mastectomy have been the most appropriate action for her? Every woman has a risk of developing breast cancer and ovarian cancer and on average, the risk is five percent for breast cancer (one in 20 Malaysian women) and one percent for ovarian cancer. But for women who inherit altered BRCA1 and BRCA2 genes, she has a 57 to 87 percent chance of developing breast cancer and a 15 to 50 percent chance of developing ovarian cancer. cancer.  Why do women women with altered altered BRCA1 and BRCA2 genes choose preventative surgery? Removing healthy breasts (preventative mastectomy) is the most effective way of preventing breast cancer. As described by Angelina, it is not an easy decision and she did it for her children, as this perhaps is the most definitive step to reduce her risk. But this is not the best option for for everyone. Angelina had access to money to pay for the best care. She had access to information and obviously understood her risks and the benefits of having the surgery. Angelina had access to

If Angelina Jolie lived in Malaysia, would she have been offered the right genetic test and the accurate interpretation? The genetic test that Angelina Jolie had was definitive – having an altered BRCA1 or BRCA2 gene does lead to a significant increase risk in breast and ovarian cancers. But for eight out of 10 women who undergo genetic testing, the results are not so conclusive. Unfortunately, for this genetic test, the phrase Unfortunately, “No news is good news” is not true – not having a mutation does NOT mean that one does not have increased risk to cancer! It just means that it is not due to BRCA1 or BRCA2 but other alterations in genes that we know a lot less about. The risk to cancer remains high if there is a strong family history histor y of cancer. cancer.

Is the Angelina Jolie story relevant to men? When Angelina Jolie made global headlines, she didn’t specifically mention that each of her children has a 50 percent chance of having the same genetic alteration. alteration. For her daugh daughter ter if she inherited the gene, she has an increased risk of breast and ovarian cancers. Her sons also have the same chance of inheriting the altered gene, and if they do, they have an increased risk of prostate and other cancers. Since 2008, researchers at CARIF CARIF,, UM and SDMC have taken part in a large international study to examine the risk of prostate cancer in men aged 40 and 69 years old with altered BRCA1 or BRCA2 and we now know that they have significantly higher risk to prostate cancer. We also know that the annual PSA blood test can be a sensitive and specific way of picking up prostate cancer in these men. Angelina was very brave to speak about her actions and the publicity can help millions of women be aware and take courage for their own decisions. Bravo, Angelina!

 About CARIF CARIF is a Malaysian independent cancer research organisation whose mission is to conduct fundamental and pioneering research on cancers prevalent in Malaysia, with potentially far-reaching implications for prevention, diagnosis, treatment and therapy. Together with Universiti Malaya, CARIF has established the Malaysian Breast Cancer Genetic Study in 2003 and the Malaysian Ovarian Cancer Genetic Study in 2008. It provides genetic counselling and genetic testing for the breast cancer genes BRCA1 and BRCA2, which put these women at risk to breast and ovarian cancers. So far, more than 1,600 breast cancer patients and more than 100 families have participated in the studies. The multi-disciplinary team includes Professor Dr Teo Soo Hwang (principal investigator for Breast Cancer Research), Professor Dr Nur Aishah Mohd Taib (consultant breast surgeon), Professor Woo Yin Ling (consultant gynae oncologist), Professor Dr Thong Meow Keong (consultant clinical geneticist) and Yoon SookYee (associate genetic genetic counsellor). counsellor). For more information, contact Yoon SookYee or Prof Dr Teo Soo Hwang, 03 5639 1874 or email [email protected]. i [email protected]. my or visit www.carif.com.my.

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