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Pascale’s Story

16 Sep 2014 by Krystal Barter
Pascale’s Story

My name is Pascale and I am 37 years old. This is my Pink Hope Story.

I emigrated to Melbourne from Kent in England nearly ten years ago and I have been without my mother, Christine, for just over twenty years. Over time it is something that has become so normal to me but today it is a situation I can not begin to contemplate for my own two small daughters, Florence and Isla, aged 4 and 20 months. Now that I am a mother I have so many questions for Mum that I am unable to ask, and I do not want them to ask the same ones if they also become mothers. I am from a family of women taken too soon by breast cancer, and very possibly ovarian cancer, although due to the vagueness of a history of “stomach” cancer I do not know whether this is one and the same thing. My youngest affected cousin was aged 32 when she died. Mum was 42, in the prime of her life, and so good looking!

Mum was French, very French. She loved clothes, jewellery, perfume, good food, fun company, fine wine, a very occasional cigarette and the sun, the sun and more sun. She was also an only child which, as I have come to realise, has served to penalise me on this journey. She lost her own mother, my grandmother, Marinette, aged 46, to the same disease. Sadly I never knew her. Then there was the so-called “family of doom” in France whom we occasionally visited on our summer holidays: a legacy of maternal aunts and cousins who had also lost battles to breast cancer. I remember woeful talks of remembrance over coffee at the kitchen table.

When Mum was diagnosed with breast cancer in 1991 she said to Dad, “I have been waiting my whole life to get this”. She was 40 years and 1 month old, which became significant later on in the drawing of lines in risk assessment. Dad always thought of Mum as such a strong person that it seemed impossible to him she could lose against breast cancer but almost three years later she did just that.

She had a lumpectomy, radiotherapy and took Tamoxifen to treat the breast cancer. Everything was looking positive but about a year later she had a niggling feeling and sure enough cancer had returned in her hip. She had chemotherapy, lost her hair (I helped to shave it off in the bathroom), wore hats and a hot and itchy wig, and continued working until the end of 1993 when she collapsed at the school where she worked as a teacher and was taken to hospital in an ambulance. Her hip was massively weakened. She used a crutch to get around, then a wheelchair (Dad had to rapidly learn to drive), then came paralysis on one side of her body and soon afterwards she was moved from home by ambulance to the Pilgrim’s Hospice in Canterbury.

The cancer quickly spread to her liver, through her body and finally it became a brain tumour. Hallucinating on morphine she saw “G O L D I N F I N I T Y” spelled out on the wall of her hospice room and beautiful ghostly girls dressed in roses and gypsophila came towards her. She wrote a farewell letter to her daughter with a wonky hand and listed out her jewellery by writing on paper hand towels from the dispenser. She died on the second day of my G.C.S.E . final school exams – Maths and History – a teary, blurry day at sweet sixteen I will not forget. Even now, when I think about that day, the tears come back, thick and fast. We had lost her and all within three short years.

Not long after moving to Australia I was asked by my G.P. about my family history of breast cancer and she suggested she refer me to a surveillance program at the Peter MacCallum Cancer Centre in Melbourne where I would be risk assessed and then monitored in a familial cancer clinic at 6 monthly intervals with annual mammograms. This was 2007 (I was 30) and my risk was considered moderate but I would be monitored as high risk, based on the fact that Mum was an only child and had no other immediate family members. At this time I still felt young and had my head buried in the sand about my situation. In 2009 I also became eligible for annual MRI screening through new funding which was a big relief as I knew mammograms are not as effective in young, dense breast tissue.

Pacale girls

In 2011 and 2014 I had a couple of scares while breastfeeding my two daughters. The first was a benign cyst that was drained and the second was a painful infection. Both times sent me into a panic, going from A to Z in a heartbeat thinking this was finally the big C coming for me. I was scared witless. I was starting to feel like a ticking time bomb, in “the zone” age wise, and in truth realised that I had never really projected life beyond my mid 40s. The rite of passage into motherhood had made me see clearly. After a mammogram and an MRI at the end of 2014 and lots of thinking about the future of my little girls, safe in the knowledge that my family was complete, I knew it was time to square up to my risk and do what I always knew was in wait for me.

Gene testing had suddenly become more “affordable” for unaffected women through new funding and I decided it was time to do it. The option had been raised at the time of Mum’s diagnosis in 1991 but because of the newness of the testing there were concerns relating to discrimination with insurance and personal privacy and, as I was only a teenager, it was decided not to do it.

In 2014 I discovered that Mum’s tumour had been preserved according to a 30-year protocol at the William Harvey hospital in Ashford, Kent, and was therefore viable for another ten years. I spent 6 months at the end of 2014 trying to establish whether it could be tested in the U.K. with newly available science. Mum’s tumour is now here in Melbourne because the U.K. is not yet set up for the new testing. It will be tested in a new pilot scheme, meaning that fortunately for me it is funded. The test is to see whether Mum’s tumour is positive or negative for the faulty BRCA gene, a tumour suppressor. My own test has shown that I am negative. I am planning on going ahead with a prophylactic bilateral nipple-sparing mastectomy with implant reconstruction through the public system if Mum’s test is negative or has no result (there is a 30% fail rate), since in this case it can be assumed my family has a mutation that has not yet been discovered by science. If Mum’s test is positive then I will not need surgery as it means I do not have the faulty gene. (There is a 50/50 chance of inheriting it from your parent.)

The medically calculated risk of my developing breast cancer is 40% and this percentage has led to me spending a good many weeks obsessing over “risk” and the perception of it and I have ultimately realised that it is my emotional experience of witnessing the effects of “fast and furious” breast cancer that has shaped my decision making, and not the numbers. With the love and support of my husband, Rob, despite his difficulty to fully understand it all, I feel that it is the only decision I can make for the sake of my family’s happiness. Fortunately I am now in the best position with a great medical team to support me in my next steps. I am very grateful to my lovely genetic counsellor for holding my hand throughout this journey, listening to my “scanxiety” and putting up with my impatience for control.

I recently read some negative remarks about Angelina Jolie’s advice to those women in my situation. They inferred that she could only have made this choice because as a celebrity she is privileged and she had the disposal of the best surgeons without any significant out of pocket costs. I don’t believe that this is true and I think that my story shows this. If in May 2013 Angelina Jolie had not told the world what she had chosen to do to her body I really believe that I would not be contemplating this “previvor” status now. I am so very thankful to her for raising the profile of this issue and accordingly for directly bolstering charities like Pink Hope, helping them to grow and provide essential support and networks for many women just like me. It will be amazing to live worry free without that big black cloud rumbling in the distance. I hope that in twenty years’ time when my girls are grown the choices will have developed even further for them, just as Mum predicted for me twenty years ago.

Today I know I have been given the luxury of choice about my future that was simply not available for her or her mother, aunts and cousins. And if I make it to forty with new boobs I will most definitely be having a “Bring Your Best Cleavage” party!

 

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