Lee's Story - a family's genetic twist

August 01, 2014
Lee's Story - a family's genetic twist

Driving through the streets of Perth en route to her parents and watching as the world around her suddenly shifted into slow-motion. There she was in the bubble that was her car, seeing everyone around her move through their life; and absolutely none of them had any idea what had just happened to her…

That’s how Lee describes the reality of a breast cancer diagnosis hitting her. Of course, up until that moment she was convinced she felt fine, she looked fine, she was fine. There was nothing to worry about.

She first detected the lump whilst breast-feeding less than a fortnight prior. She’d had hormonal lumps in the past and thought very little of this latest discovery. Besides – she had her son’s fourth birthday party in just a week’s time, and a lot to organise. So once birthday celebrations were over Lee made the presumably unnecessary visit to her GP, where she was reassured that it very likely was nothing. Lee’s father, a radiologist, suggested otherwise and urged her to head to Perth for immediate testing. The mammogram was all-clear. But then again, Lee was only in her late 30s and young breast tissue is usually quite dense, making it more challenging to detect abnormalities. The ultrasound however, delivered alternative news and a fine needle biopsy was urgently followed by a core biopsy. Not only did Lee have breast cancer, she had a 12mm grade three cancer, a highly aggressive form that was also a ‘triple negative’.

Lee remembers that drive to her parents, and sitting outside their home with her father, the two of them crying over the news. There was precious little time to react – less than a fortnight later and Lee had undergone a lumpectomy, before commencing six rounds of chemotherapy for 18 weeks, and then 30 days of radiotherapy. Up until her treatment Lee had felt fine – undergoing treatment made her feel very much like a cancer patient.

Lee Sieracki   A Fundraiser....hamming it up for the camera.

It was after her treatment that Lee fell into a deep abyss of depression. She remembers trying to explain to uncomprehending family members how horrible she felt, how intolerable it was to get out of bed and start yet another day. Her paternal grandmother had suffered from the illness, so Lee’s condition drew understanding and concern from her father. But (along with Lee herself) other family members found it more challenging to grasp – how on Earth could she possibly be depressed? She’d just dodged a breast cancer bullet. If anything – she should be feeling like she has a whole new lease on life.

Learning of a nearby Breast Cancer Network Australia (BCNA) support group meeting was the first step towards that new lease on life. It was here that Lee met women like her; women going through similar challenges as her; women feeling the way she felt. Lee was taken aback when BCNA suggested she consider a Community Liaison role, but she flew to Melbourne to undertake the course and has not looked back. On the contrary – she has flourished.

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Indeed it was whilst she was in Sydney at a BCNA event that Lee and a fellow friend and cancer survivor conspired until the wee hours of the morning… What could they do to get more women their age engaged with BCNA and informed about breast cancer? How could they raise funds and maybe do some good for themselves at the same time – get active again after such a long sabbatical dealing with breast cancer? The answer? ‘Pink Pedal Challenge’ – a 20-women strong, ten-day cycling tour starting in Vietnam and winding through some of the most rural, remote and spectacular regions into and around Cambodia. With half the cyclists having been diagnosed with breast cancer, and two of them with secondary cancer, it was a trip that delivered the highest of life’s highs and the lowest of its lows. Together the women raised over $141,000 (and counting) for BCNA.

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But alas, Lee’s cancer story doesn’t finish here.

At her five-year check-up, Lee became disillusioned and disbelieving of her GP’s advice that all was now fine; that everything would now be OK. Lee on the contrary had felt otherwise. A very distant cousin who had worked in the health care system and who had investigated the family tree unearthed some alarming anomalies – family members were dying too young and they were dying from cancer. The cousin insisted on a genetic test which, if you don’t know precisely what gene you’re looking for, is much like searching for a needle in a haystack.

Test one – all-clear. Test two – all-clear. Test three – bingo.

Her cousin had a BRCA 1 genetic mutation, meaning she had as much as 85 per cent higher risk of contracting cancer than people without the mutation. Lee was convinced she also had the mutation, and by-passed her GP’s laissez-faire response, taking the family tree history straight to her surgeon.

The result? Yes – Lee also had the mutation and was at high risk of several cancers. She underwent a bilateral mastectomy – a 12-hour surgery that included breast reconstruction. Four weeks later Lee then had her ovaries, uterus and tubes removed. It was shortly after that pulmonary emboli, or blood clots on the lungs, were detected. Lee had begun to experience intense pains in the chest that became increasingly frequent and worse. The first doctor to attend to her ran an X-Ray which revealed nothing wrong (X-Rays would never have detected clots). This same doctor dismissed the idea of clots given Lee’s youth and health. Thank goodness for Lee a more experienced doctor in Emergency insisted on conducting a CT scan.

There is a chance that when both her sons turn 18 and are tested they too might carry the genetic defect.

And Lee’s cousin? She elected to have her ovaries removed many years ago when first making the BRCA 1 discovery. However, unbeknownst to her the surgeon only removed one instead of both. Her cousin is now bed-ridden in hospital, dying of the ovarian cancer she thought she’d taken steps to eliminate. It is a tragic twist for a woman Lee credits with saving not only her life, but potentially other family members. It’s a sobering twist to an otherwise incredible family story of persistence and determination. As Lee says, she doesn’t doubt for a moment that the health professionals who supported her cared deeply for her and did their best to get her through… Yet ultimately Lee is one of countless other patients, all equally deserved and equally in need. In Lee’s words – “my experience with cancer has taught me to be proactive, persistent and to persevere. No-one knows yourself like you do. Query everything you feel necessary. Act on it.”

You call on the experts, you call on the support networks, but you have to empower yourself to get through this.

Find out more about breast cancer in Australia

Breast Cancer Network Australia (BCNA) works to ensure Australians affected by breast cancer receive the very best support, information, treatment and care appropriate to their individual needs.

Lee Sieracki   Most recent photo of me with Sam 3  and Bailey 6

Lee with her family

If you or someone you care about has recently been diagnosed with breast cancer, contact BCNA for a My Journey Kit, a free information resource for newly diagnosed women. For more information, support or to donate visit BCNA website or call 1800 500 258