Zoleka Mandela on Carte Blanche

Zoleka Mandela (Nelson Mandela’s granddaughter): ‘If I have to be honest with myself I think I was in denial.’
Nelson Mandela’s granddaughter, Zoleka Mandela discovered a lump in her left breast little more than a year ago.Zoleka: ‘When I had told my aunt initially, she had told me, ‘You have to go get yourself checked, get a mammogram,’ and so forth. So I always delayed it and delayed it because somehow in the back of my head I thought, ‘If this is cancer, it means death.”Zoleka knew all about the impact of breast cancer, her father’s sister had succumbed to the disease.

Zoleka: ‘I felt like I’m not in control of the situation, now here it is – cancer is going to have its way with me.’

Known for her beauty and physical attributes, actress Angelina Jolie made a decision to take control of the disease before it took control of her.

[Excerpt: My Medical Choice by Angelina Jolie] ‘Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.’

This is an excerpt from Angelina Jolie’s New York Times editorial in which she made it known that she’d had an elective double mastectomy.

[Excerpt: My Medical Choice by Angelina Jolie] ‘I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made.’

The article dominated world news, showing how powerful celebrities personal stories can be.

Devi Sankaree Govender (Carte Blanche presenter): ‘What was your reaction when you heard Angelina Jolie’s admission?’

Dr Carol Benn (Breast surgeon): ‘I felt desperately sorry for her. You know, we look at people and they seem to have such perfect lives, and so beautiful and yet, by the roll of a dice they land up with genetics such that they have a high risk of developing breast cancer and, in her case, ovarian cancer.’

Dr Carol Benn is one of South Africa’s leading breast surgeons.

Dr Benn: ‘Breasts are so emotive. There is a concept around beauty and external beauty. So now you’ve got this emotive issue around something that is actually a ticking time bomb.’

Angelina’s drastic decision was spurred by the fact that her mother had died from breast cancer when she was only 56.

Zoleka Mandela was also fiercely protective over her children. But her joy as a parent has been marred by tragedy. Her 13-year-old daughter Zenani was killed after the 2010 World Cup.

Zoleka: ‘I lost my daughter to drunken driving just two days after her 13th birthday and my life has never been the same ever since.’

Almost a year later she gave birth to a three-month premature son, Zenawe, who died in hospital. As if things couldn’t be bad enough, she then found the lump in her breast.

Zoleka: ‘I had found a lump in my left breast that didn’t so much concern me at the time because I had thought it was due to the medication I was given. I had actually given birth to my last born, Zenawe, who I lost two days after birth and I was given medication to stop the milk and so I thought that was the cause of it.’

Devi: ‘When you found out you had breast cancer, how did you feel?’

Zoleka: ‘I had just lost two kids, I’ve lost my daughter and my son, now I may not even be able to conceive and now should I conceive, I can never breastfeed ever again. So I think for me that must have been the scariest moment of my life.’

Ten-year-old Zwelami is her only surviving son. Zoleka was adamant she had to be there for him by protecting her health.

Zoleka: ‘I did not want to have to go through in just those couple of months and then have to face it again with my other breast and so I opted for bilateral mastectomy with immediate reconstruction.’

Angelina’s motivation was to protect her children from the trauma she went through when she lost her mother.

[Excerpt: My Medical Choice by Angelina Jolie] ‘We often speak of ‘Mommy’s mommy,’ and I find myself trying to explain the illness that took her away from us [...] but the truth is I carry a ‘faulty’ gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.’

Devi: ‘The BRCA 1 and 2 genes were discovered in the 1990s. Everyone has the gene but the test will tell you whether they have mutated.’

Dr Devan Moodley (Oncologist): ‘So when this gene exists in a mutated or abnormal fashion, it takes away that suppressant effect, thereby increasing the likelihood of developing a cancer.’

Devi: ‘But it’s not as easy as it sounds. Unlike a pregnancy test which will tell you whether you will be having a baby or not, these tests are very complicated.’

Oncologist Dr Devan Moodley says the South African gene database is very limited.

Dr Moodley: ‘Therefore the test in this country is not necessarily as accurate. We have many families in our local context who we see, for example, all three daughters have breast cancer, the mother has breast cancer, the dad had colon cancer – this is without a doubt a BRCA mutation. We found nothing.’

It’s not a completely reliable test and he says one should be cautious of taking medical decisions based on it.

Devi: ‘Before you had the cancer, did you know about genetic testing?’

Zoleka: ‘Absolutely not.’

Former TV presenter Janie Du Plessis has graced many magazine covers: she is a breast cancer survivor and like Zoleka Mandela uses her celebrity status to generate awareness. The NGO she supports is Cancervive.

Janie Du Plessis (Former TV presenter): ‘It was terrible – devastating for my life. Everything was taken away from me. Everything – I lost my marriage, I lost my confidence. It is like a domino is starting to fall because I wanted to make one change and then everything changed.’

Devi: ‘Would you have done the test if it was available at the time?’

Janie: ‘I just wouldn’t have thought about thinking about it. And that is what is so amazing about her [Angelina]. But the fact that you are so proactive is amazing.’

Most women know that they should have mammograms every year after turning 40, but Angelina Jolie’s double mastectomy has invoked a fear in some women who feel that they are not doing enough and that they should be considering genetic testing.

Genetic counsellor Noelene Kinsley says it costs R8000 to do the BRCA tests.

Noelene Kinsley (Genetic counsellor): ‘Firstly this test is not diagnostic, so it is not: if you have this, you have cancer and only if you carry these mutations in your genes are you at risk of developing cancer. If you don’t it doesn’t mean you will never get cancer, it is just that it is not an inherited cancer.’

Devi: ‘Who should consider genetic testing?’

Noelene: ‘Anyone in a family where there has been a first degree relative with breast cancer or ovarian cancer and where the age is young – before 50.’

Angelina’s public decision has been criticised because it could set a trend and because it did not stress enough that the BRCA mutation is very slight.

Dr Noluthando Nematswerani from Discovery Health says they’ve had enquiries.

Dr Noluthando Nematswerani (Discovery Medical Aid): ‘There will be a fair amount of panic. But doing a prophylactic mastectomy is not a small operation as well. It is something that requires courage from the person that is doing it and there must be some real risk that motivates such a decision and it has to be done within a well controlled environment. Because, I mean, if you look at most of these patients, it doesn’t just end there – they will also have to go and remove their ovaries, because the risk is not only related to the breast.’

While Angelina is unlikely to never need chemotherapy, Zoleka has had 16 doses of it.

[Archive] Zoleka: ‘I’m starting to feel slightly sick. So that causes the hair loss and it pushes me into early menopause. There’s the nausea, obviously losing the hair, the lashes, the eyebrows, loss of appetite and then the mood swings, blah, blah, blah…’

Dr Moodley: ‘The list of side effects are a mile long from all of these procedures. So the big advantage of this is providing you who are at significant risk when you do the operation. You then take away [that risk], you can never take it down to nought – you significantly reduce the risk.’

[Excerpt: My Medical Choice by Angelina Jolie] ‘My chances of developing breast cancer have dropped from 87 percent to under five percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.’

Janie: ‘I think that everyone around me is aware of the fact that my cancer can come back anytime, and I feel very responsible to remind them that it won’t.’

And it needs strong women to put out that message.

Zoleka: ‘I couldn’t go through this experience and keep quiet about it.’

Devi: ‘Where do you see yourself in the next couple of years?’

Zoleka: ‘I see myself having babies (laughs).’

After the interview Zoleka went to her oncologist and received the news that she’s cancer free.

26 May 2013 07:00
Carol Albertyn Christie 
Devi Sankaree Govender 
Carte Blanche


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