With breast cancer claiming the lives of hundreds of thousands of women annually, many are choosing to remove their breasts before diagnosis, but is this a drastic alternative?
Kelly Clarke talks to women who have undergone prophylactic mastectomies
As young thirty somethings in good health, most women are making decisions about career moves or family life. But a new phenomenon has been hitting the headlines recently, which has left growing numbers of women with an unenviable choice — one that could have untold effects on their personal lives.
With breast cancer the most common cancer among women worldwide, research conducted by the Breast Cancer Statistics Worldwide has listed it as the most fatal type in women.
As a result, an increasing number of women are choosing prophylactic mastectomy.
This invasive procedure, through which women have their breasts removed despite no cancer diagnosis, is considered an alternative to intensive screening.
The reason for the trend, according to Well Woman breast consultant Dr Houriya Kazim, is because of family history and the introduction of genetic testing.
“We are now able to do a simple blood test for some high-risk women to determine if she is carrying one of the genetic mutations ... if they test positive they usually choose to have prophylactic mastectomies.”
But why? In a bid to reduce the risk of developing breast cancer, many of these women see the procedure as the only way of securing a worry-free future.
Forty-year-old Briton Dr Kavita Dhingra had the prophylactic procedure at the age of 36, three years after relocating to Dubai.
A general practitioner with three young children, Dhingra decided to go for gene testing after a close friend was diagnosed with breast cancer.
“To deprive my kids of a longer life with me ... how could I live with that? I knew in my head, my gut, what I wanted ... if the test came back positive I would have the full mastectomy”.
Although her maternal grandmother was diagnosed with ovarian cancer and her mother had her ovaries removed in her early forties as a precaution, Dhingra had no family history of breast cancer and was counselled against the need for genetic testing by several doctors in the United Kingdom.
“There was no real basis for me to have the test ... my family history wasn’t strong enough.”
But she took matters into her own hands and did a private blood sample with a doctor in Dubai.
Eight weeks later, in July 2009, she was hit with the news: she had a gene mutation.
“I was given an 85 per cent chance of getting breast cancer and I thought ‘You know what, I’m not living with that, I just want the operation’.”
The gene mutations that cause breast cancer also cause ovarian cancer and the moment the results came in, Dhingra decided she would also undergo a prophylactic oophorectomy — the surgical removal of the ovaries — once she turned 40.
She will be getting back on the operating table this summer, four years after her prophylactic mastectomy.
Dhingra had given birth to her third child just six months prior to obtaining her genetic results, but said it was difficult to know if her decision regarding the prophylactic oophorectomy would have been different had she not had children at that point.
“I had three kids ... I would have loved to have had another, but I thought that was tempting fate”.
Prophylactic mastectomy
With no genetic counsellors based in Dubai, Dhingra returned to the UK in August 2009 to talk through the emotional impact of the genetic results and her upcoming surgery.
Determined to undergo the mastectomy as quickly as possible, Dhingra had the surgery in the UK a month later — where costs were significantly cheaper.
She admits the decision was rushed and described it as “a bit of a shambles”, as she had not taken the right steps leading up to surgery.
“I chose my surgeon because she was happy to do things on my terms, without me having to discuss the psychological aspect of what I was planning.”
Her refusal to go through the recommended counselling procedures is a decision she now regrets.
“I panicked a bit and I thought ‘What if I develop cancer whilst waiting for the procedure?’...that was my urgency to have it done”.
Being the only medic in the family, she felt like she had to hold everyone together, she says.
“I was in doctor mode. I wasn’t thinking like a 36-year-old feminine woman.”
Following the mastectomy, Dhingra underwent basic reconstruction with a breast surgeon. She was advised that expander implants would give the least natural result, but at the time “it was about the medical result, not the cosmetic result”.
“Do I regret that I didn’t take time out for counselling and to research the best cosmetic result? Yes. However, it’s taken me three years to recognise that.”
With her second prophylactic procedure just weeks away, Dhingra says she has no regrets about undergoing the mastectomy but cautions that prophylactic procedures are not the answer for everyone, and those considering it should talk with a doctor about their risk of developing the disease, the surgical procedure, its potential complications, and alternatives to surgery.
Dr Kazim says women categorised in the moderate- to high-risk group who go ahead with the procedure can significantly reduce their chances of developing breast cancer by up to 90 per cent. Although alternative treatments are available, “prophylactic mastectomies decrease the risk (of developing the disease) to practically nil”.
When faced with the possibility of breast cancer, and the invasive treatments that go hand in hand with the disease — radiation, chemotherapy, hormonal treatments — this is a promising statistic for many.
Carol Doeringer lost two close relatives to the illness, which prompted her decision to get a double prophylactic mastectomy in July 2011, after being told she carried a marker for an elevated risk of breast cancer.
Doeringer said it came down to facing cancer on her own terms and schedule.
For the 58-year-old consultant from the United States, no deliberation was needed.
“I made my decision to have the bilateral mastectomy literally instantly,” despite friends telling her it was a draconian answer.
With a fully supportive family behind her this was the best chance she’d have at beating the disease, she says.
“I felt that I had been given (the) early warning signals my mother, aunt and grandmother had not benefited from. I had the opportunity to get cancer before cancer got me.”
In the same operation as the mastectomy, Doeringer had simultaneous reconstruction with surgeons using abdominal fat to fill the skin left over.
Post-surgery, some doubt did plague Doeringer.
“The reconstructed breasts are not pretty to see immediately ... they have this strange look (and uncomfortable feel).”
Fortunately, Doeringer had met a woman who had undergone the same procedure and warned her of the first reveal.
“In her words ‘I want you to see the end result, because when you wake up from the surgery, you will think you got the biggest botch job on the planet’.”
But after a few months of healing, Doeringer said the reconstructed breasts “look and feel much like a natural breast”.
And in regards to feeling any different as a woman, Doeringer says: “Not in the least.”
She says while breast cancer treatments today can be very effective, they are quite debilitating and she believes more younger women are choosing prophylactic procedures while still healthy, as it aids the recovery process.
Breast cancer in the UAE
The president of Friends of Cancer Patients Ameera bin Karam says it is hard to gauge the experiences of people who have undergone prophylactic mastectomies in the country, as the whole topic of cancer is still taboo.
She stresses that the country needs to be “more proactive when it comes to breast cancer awareness” and said there was a need for regular discussions about cancer, as breast cancer is one of the UAE’s three biggest killers.
And Dr Kazim agrees, saying it is vital that women are educated on their treatment options when it comes to preventing or battling breast cancer.
“What awareness does is picks up the disease at an earlier stage.”
Support for high-risk women was lacking, which could have a detrimental effect on women choosing to undergo the procedure. Dr Kazim says support is vital.
“I don’t know of any support groups here that just focus on the high risk ... but if we end up going down the road of them having to have mastectomies, I always have them talk to another patient one-on-one who has already had the surgery.”
Whether it was a case of low procedure numbers in the country, or a patient’s unwillingness to speak up, there was a noticeable lack of women in the UAE coming forward to share their prophylactic mastectomy experience.
Karam offered some insight.
“If the cancer patient is Emirati (you will find that) culture plays a major role in making those decisions”.
Family influences can prevent many local women from sharing their experience and Karam said at FOCP there have been cases where “the patient wants to speak up, but her family does not want her to”.
She says the oncology sector in the UAE isn’t as advanced as in the West, adding that for locals superstition often takes a front seat when it comes to cancer.
The ‘big C’ is not something readily talked about — with an ‘if we say the word we might get it’ attitude, she says.
So can cultural influences and superstition really be put before a person’s health?
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