Jacqui Gal

Surviving breast cancer

Ashkenazi Jewish women are 10 times more likely to develop a genetic form of breast cancer. Carole Pillemer was one of them. She spoke to JACQUI GAL about the journey, her radical surgery and how she survived the ordeal.

Photo: Mark Morffew Photographers

When cancer strikes, it’s a devastating blow to the family and friends of the victim. And while there are a slew of treatments currently available, the sufferer can feel helpless.

For some the idea of undergoing a double mastectomy – removing both breasts – to avoid breast cancer may seem like an extreme measure. But for Carole Pillemer, it was an easy decision.
Pillemer, 33, found out through a genetic test that she carried a particular gene fault, associated with breast cancer and prevalent in Ashkenazi Jews.

“Five per cent of women develop breast cancer because they have an inherited fault in a gene,” explains genetic clinician Dr Lesley Andrews. “In the general population [the gene fault] is found in one in 500 women. In the Ashkenazi Jewish population, it’s one in 50.”

This phenomenon is due to relatively low levels of variation in the group’s gene pool. “With a wider population, you find a much wider spread of gene traits, but in a small population there are low levels of some traits and high levels of others. This is one of them.”

The relevant genes BRCA1 and BRCA2 were identified in the early 1990s. Individuals with one of the gene faults have a 60-70 per cent risk of developing breast cancer and a 20-40 per cent chance of developing ovarian cancer.

“The big difference with these gene faults is that you develop the cancer at a younger age than 95 per cent of other cancers which usually occur post-menopause. “So it not only occurs, but it occurs earlier and that has social implications.”

Pillemer, who lost her mother to breast cancer at 18, can attest to that. “My mother had breast cancer at 35 and died five years later. My youngest brother was only five at the time. “I watched my mother die a horrible death and I had a terrible fear of getting breast cancer and following her footsteps.”

Dr Andrews has been co-ordinating the Sydney Jewish breast cancer study since 1997,which offers women with any family history of breast or ovarian cancer the opportunity to undergo testing for gene faults. Six centres across Australia and the US pool results from the tests.

“When I first heard about it [the genetic testing] I went and asked about it right away,” says South African-born Pillemer, who was temporarily living in the US at the time. But Pillemer was advised to wait until she had finished bearing and breast-feeding her children before being tested.

“I had my children quickly and young,” says Pillemer, who gave birth to her first child at 26, and now has four in total. “When I did the test I knew I had the gene. I just had this feeling; it’s a genetic curse. “For a lot of girls they make you wait three-six months and sit on a decision about whether to have surgery. But for me, my breasts were my enemies.

“It depends on your experience. For people whose mothers have lived, they may not be so scared, but because I watched my mother die I knew I had to do it. “I was the quickest person they have ever done. I pushed it through; I wanted to do it quickly.”

The procedure that Pillemer underwent involves three separate surgeries. The first is a double mastectomy, where muscle expanders are implanted to stretch the patient’s chest muscles. In a second operation the expanders – which have been periodically injected with a solution to increase chest space – are substituted for implants. The third procedure is a nipple reconstruction.

Pillemer recently underwent the second of the three procedures. She also intends to have her ovaries removed. “People said to me, ‘Isn’t it radical?’”

“But I can’t understand why people wouldn’t do it. For me it was such a powerful knowledge to be able to have it done. People said to me that I was so brave. But really I was just scared of getting cancer.”

However, for some Australian Jewish women, family medical histories are unknown. “Because we have the highest proportion of Jews who are Holocaust survivors and descendants outside of Israel, many women of my age wouldn’t know their family history,” says Dr Andrews, 48. “And relatives may not have lived long enough to know if they would have had the cancer.

“Information about previous generations has been lost and there has been a dispersion of communities around the world, which creates a barrier to communication. You don’t always know about your family living around the world.”

Meanwhile, Pillemer, who has been flooded with calls from interested women, is keen to bring her experiences to light. This is a positive move since, according to Dr Andrews, many affected women feel isolated when they learn of their results. “It’s not something people talk about,” she says. “Some people are concerned that it might cause discrimination for their children in the community.

“Another issue is insurance discrimination. Women with the gene can be precluded from getting life insurance or certain types of income protection insurance.” But the over-arching benefit, says Dr Andrews, is the control that women can achieve by having this genetic information. “They don’t have control over their genes – they may still pass on or inherit – but they can do early screening, more intensive screening or have preventative surgery.”

Many women with the gene fault opt to have their ovaries removed after childbearing and a smaller number opt for mastectomies. “The take-home message is that women need to be aware that a family history of breast or ovarian cancer will have more impact on the risk than it would for someone who doesn’t have Jewish ancestry.

“If there’s a family history of breast cancer before the age of 50 or ovarian cancer at any age, they should discuss genetic testing with their doctor.” Women should also be aware that half of all women who inherit a gene fault receive it from their fathers, says Dr Andrews. So family history on both sides should be considered.

“It’s such an emotional thing,” adds Pillemer. “I woke up [from my surgery] on such a high. For girls living in fear, I want to tell them that it’s so great to wake up positive. “I have always sprinted my life. Now I can take it easy. Now it’s such a relief, the fear has evaporated.

“I’m thankful that I have this opportunity to live long. And I know that my mother would be so proud of me.”

Dr Andrews can be contacted at the hereditary cancer clinic at the Prince of Wales Hospital, where an information booklet for Jewish women is also available. Inquiries: (02) 9382 2551.