The Lucky One

by Krystal Barter

Riley, that’s why. Riley was the reason I finally decided to bite the bullet and take a genetic test for breast cancer and I’m so lucky I did. My future could have taken a completely different path if it hadn’t been for my little guardian angel. For the second time in his short life, my son saved me.

  I had a blood test for the BRCA genetic fault in August 2006 when I was 22 years old. The test took place at my local GP’s surgery and was just like any other blood test. They could have been testing me for the flu or for my glucose levels or for a niggling vitamin D deficiency, for all I cared. After all my agonising for so many years about whether or not to get tested, when I finally did it, it was an anti-climax. Like, that was it? That’s what all the sleepless nights were about? I was in and out of the clinic in less than twenty minutes and as I wandered back to my car I couldn’t help but feel strangely disappointed. I’m not sure exactly what it was I had expected. A certificate? A plaque on the wall? Perhaps an overhead fireworks display? (The doctor, it must be said, had congratulated me on my brave choice and on being so proactive about my health.) But still the enormity of deciding to take a genetic test and the simple act of giving blood in order to do so were ridiculously incongruous.

  Of course, the sleepless nights weren’t over the test itself; they were over the results. Chris and I had talked about these at length and he showed such unbelievable support, always saying things like, ‘Babe, I knew when I got engaged to you what I was getting myself in for. Cancer gene, or no cancer gene—I’m not going anywhere. I’m right by your side no matter what.’

  One of the things we did discuss was how I might approach the news: what my mental state should be when I went in to get my results and how I could best prepare myself for the worst. I was like an elite athlete psyching myself up for competition and this was my macabre Olympics. But, unlike most athletes, the strategy Chris and I came up with was: think negative.

  ‘Look at it this way,’ Chris reasoned, ‘if you go into this expecting to learn you’ve got the breast cancer gene, then you’ll be as ready as you’ll ever be to hear the bad news. Whereas, if you blindly hope right up until the last minute, then there’s a good chance you’re going to be disappointed.’

  ‘And the shock will be hell,’ he added quietly.

  I closed my eyes and physically braced at the thought.

  ‘But if you expect the worst and you get the all-clear,’ he continued, ‘then you’re laughing.’

  I tried to imagine a scenario, any scenario, where laughing might be in order. The idea seemed so foreign to me at the time. I knew when I took the test that it could be up to six months before I had the results. But having spent years deliberating over whether or not to take the test, now that I’d done it I wondered how I could possibly wait that long for the outcome. Could I really get on with life as normal while elsewhere, off in some lab somewhere, a technician was scrolling through my DNA to see if I might die an early death from cancer? Could I really wake up every day for six agonising months and feed Riley his Weet-Bix and mashed banana and wave Chris off to work and pretend like it might not all be about to come crashing down like a house of cards?

  It turns out, I didn’t have to.

  Three weeks after I took the blood test I received a phone call telling me my results were available and that I was welcome to come in and meet with my genetic counsellor. Already? And, genetic counsellor?

  ‘Genetic counsellor!’ I exclaimed to Chris as soon as I hung up the phone. ‘I’ve got my own genetic counsellor. That can’t be a good sign. And what does it mean that my results are in so quickly? Was it really that painfully obvious that I’m going to get cancer?’ So much for all the sports-psychology stuff that Chris and I had been practising. Here I was panicking and before the starter’s gun had gone off.

  ‘Just breathe, sweetie,’ Chris said, sweeping me into one of his enormous bear hugs. ‘I’m sure these days they’re required to get genetic counsellors in to deliver this sort of news regardless of the results. Plus, surely it’s a good thing we don’t have to wait any longer? And, anyway, what happened to “thinking positive”?’

  Chris and I had nicknamed our approach ‘thinking positive’, as in testing ‘BRCA1 positive’ (meaning cancer-prone) and not ‘thinking on the bright side’. Although our strategy was to plan for the worst and to expect to hear the words ‘BRCA1 positive’, we somehow felt that by referring to it as ‘thinking positive’ we were taking charge of the situation and not just being victims.

  But the situation now felt like it was sliding out my control and fast. Sure, I wanted to know my genetic test results—I was desperate to end the worrying and the wondering and the biting my nails to the quick—but was I really ready to hear what my genetic counsellor had to tell me? Was I ready to even have a genetic counsellor in the first place? Sure, just minutes ago I thought I had months to prepare for this news and now I was only going to get a few weeks. But if I was freaking out this much at only a slight hiccup in my plan (and a good hiccup at that; I mean, three weeks of waiting is better than six months, right?), then how on earth would I cope if my test results were not what I expected? And what did I expect anyway? I thought I expected to learn I was BRCA1 positive, but was I really prepared for that eventuality? Really? Deep down? And, if so, was I ready to hear it or did I just think I was ready? Maybe I was trying to convince myself I was fine when I wasn’t? Maybe I wasn’t even close to being fine? Hell, could anyone really be fine with hearing that they’re highly likely to develop cancer, and soon? I was infinitely unsure the day Chris and I travelled to the Hereditary Cancer Clinic at Prince of Wales Hospital in Randwick, in Sydney’s eastern suburbs, to meet my genetic counsellor.

  ‘Krystal? It’s good to see you!’ An intelligent-looking woman smiled at me from the far side of her desk. This was no genetic counsellor; this was Dr Kathy Tucker, head of Hereditary Cancer at Prince of Wales and a long-time friend of the family. I’d known Kathy since Mum and Nan first tested positive for the BRCA1 gene, back when I was only eighteen years old, and she’d been part of our lives since.

  ‘How could I not meet with you today?’ she asked me, seeing my confused face. ‘I’m afraid I hijacked your meeting as soon as I heard you were coming in here.’

  I was immediately relieved that Kathy, someone I knew so well and trusted, would be the person delivering my test results.

  ‘As you were told over the phone, the results of your recent genetic test are now available, Krystal. But we’ll get to those in a minute. First, I’d like to ask you, are you ready to receive your results today?’ Kathy asked.

  In just about any other situation I could think of (exam results, driving test results, the final week of Masterchef ), this would be a redundant question. Of course I’m ready! Don’t leave me in suspense! But not this time.

  ‘Yes, I’m ready,’ I said and I reached out for Chris’s hand. Then I baulked. ‘At least, I think I’m ready. I’m trying to be ready! How do I know? Can you take a test to see if you’re ready to get your test results?’ I joked lamely. I wasn’t sounding like someone who was anywhere near ready.

  ‘Think positive,’ Chris said in a low, steady voice as he gripped my outstretched hand.

  Kathy smiled at both of us patiently. In front of her sat a single sheet of A4 paper covered in an intimidating set of numbers and medical hieroglyphics. It was staggering to think that my puny vial of black-red blood had been transformed into this impressive sheet of numbers, and that this impressive sheet of numbers was about to dictate my whole future.

  ‘Yes, I’m ready,’ I said again, lying, but not prepared to wait any longer.

  ‘Well, then,’ Kathy said. ‘Krystal?’

  ‘Yes?’

  ‘Krystal, you’re positive for BRCA1.’

  I let my breath out and felt the strange sense of relief that comes from knowing you’ve arrived at rock bottom. Positive. I was positive. I had the breast cancer gene.

  Chris squeezed my hand.

  ‘Krystal?’ In fron
t of me Kathy was trying to get my attention. ‘Krystal, I know what you’ve just heard is a shock but I want you to believe me when I say that your journey starts here.’ She smiled gently again and paused while she let me digest this.

  ‘Your test results revealed the same genetic fault as is present in your mum and in your nan but your journey will be different to theirs.’ I think I actually smiled at this.

  ‘You’re not going to tread the same path as they did,’ Kathy went on, ‘because you have valuable information about your genes that wasn’t available to your mum and your nan before they developed cancer. So there’s simply no way that your story won’t be different.’

  Truly, I don’t know how she did it but Kathy managed to raise my hopes about my future that day as she delivered the very worst news. If you are ever unlucky enough to hear the words ‘BRCA1 positive’ then I can only hope you are lucky enough to hear them from Dr Tucker. She was truly amazing that day and has held my hand for so much of my journey since. In fact, I now consider her to be so much more than a doctor to me; I consider her a friend.

  But she wasn’t finished yet.

  ‘So, Krystal, by being proactive and constantly monitoring your breast health, there are ways you can catch breast cancer early. It takes patience and vigilance—’

  ‘Wait, what?’ I interrupted. ‘Patience and vigilance?’

  I was incredulous. Was she telling me that—having just found out I had an insanely high chance of getting cancer before I hit 30 years old—the best course of action was to sit around and wait? To wait! I could no more wait to be struck down with cancer than I could lie down in the middle of Military Road in Manly and wait for a semitrailer to come hurtling along! And at what point do they consider I’ve waited enough? When I’ve watched my mum and my nan nearly die of this bloody disease? When I’ve undergone genetic testing and discovered the odds are stacked against me so high that I can barely see the sky? When I’m diagnosed with my first bout of cancer? Or when I’m dying from it? Or when I’m no longer here at all but just a case study in some medical textbook about the severity of hereditary cancer? Would Riley want me to wait until I was sick and dying and too riddled with cancerous tumours to be able to bend down and pick him up anymore? There was no way in hell I was prepared to wait.

  ‘Surely there’s something I can do?’ I asked Kathy.

  ‘What we recommend for someone in your position, Krystal, is to register for high-risk screening. This is offered through our family cancer clinics and involves going for six-monthly ultrasounds and yearly mammograms in order to monitor any changes in your breast tissue.’

  ‘Okay. Thank you,’ I said, and I really was grateful. ‘But surely there’s something a little more proactive I can do? Like actively actually do, rather than just watching and waiting? Can you get pre-emptive chemotherapy? To kill any cancer before it even hits?’

  Kathy looked sympathetic. ‘I understand your frustration, Krystal, I really do. But until we have evidence of changes in your breast tissue, or until you’re a little older and more firmly within the high-risk zone age-wise, I’d be loathe to recommend anything too drastic.’

  ‘You’ve had a big shock today,’ Kathy continued. ‘You’ve received some huge news and it’s a lot to take in, no matter how much you might have been expecting to hear it. I’m not surprised that you’re feeling anxious or angry or scared or all of these things. It’s perfectly understandable. But the best thing for you to do right now is to go home and talk things over with Chris and have a really good long think before you start planning your next step.’

  ‘After all,’ she added brightly, ‘what you’ve received today is not a cancer diagnosis.’

  Sure, I thought. But there’s an 80 per cent chance I’ll get one eventually.

  Over the next few weeks and months I experienced nothing but overwhelming love and support from my family and close friends. I only told a handful of people outside of my immediate family but everyone I told was incredibly positive. And not in the ‘think positive’ way Chris and I had been in the lead-up to my test results. Mum actually said she would rather I had this genetic flaw than not, because at least it meant I would be well looked after. Anyone can get breast cancer, as our family is painfully aware, but knowing that I was BRCA1 positive now meant my breast health would be closely monitored and any changes to my breast tissue should be picked up immediately.

  And while I was so lucky to have such incredible support, I did feel a certain amount of pressure to deserve it. I mean, here were my mum and my nan, who had gone through breast cancer themselves and come out the other side (sans breasts) and who were still so indefatigably positive about my prospects. If they could experience cancer firsthand and still summon up such joie de vivre when talking about me and my future and my BRCA1 status and how I would beat this thing—then, dammit, I would. I could hardly curl up in a ball and wave the white flag, could I? I didn’t actually have cancer, and they’d both been through it at least once, so I could hardly complain. In fact, if anything, I owed it to them to put on a brave face and get on with life.

  Not to mention the fact that my diagnosis brought with it all sorts of baggage for my family by way of stress and worry and, that old chestnut, guilt. By coming up BRCA1 positive, I caused my family untold distress. Chris and Dad felt enormous anxiety and that sense of overprotectiveness that men feel for the women they care about the most. Mum was devastated yet so very determined not to show it. And, at the same time, she was racked with guilt at having passed her genetic mutation on to me. And if Mum was racked with guilt then Nan was near-crippled with it. Nan had hoped that my brother and I might have been the first generation to escape the breast cancer gene in our family but now, because of my news, she knew it could survive for more generations and she blamed herself. Double-guilt. Guilt with a side order of guilt. Guilt of truly Catholic proportions. Nan blamed herself for passing her genes on to Mum, and then again for the fact that Mum had passed her genes on to me. It was a viscous pass-the-parcel that no number of Hail Mary’s could interrupt. So the only thing left for me to do was to assure everyone else I would be okay.

  And it worked, too. My nan has since told me that my positive attitude was what helped her deal with my diagnosis. By staring down my BRCA1 status and saying, ‘I have a lovely baby and I’m planning a wedding; good times are ahead’, I was able to focus my attention, and the attention of those around me, on all the positive things we had going for us.

  On the inside, however, I was starting to unravel. I felt scared and lost and hopelessly alone. For all my family’s demonstrations of love and support, ultimately it was me that had to face the high probability of cancer. Mum and Nan might have been there and done it all before, but this time I was the one that had to fight. I was the one that had to steel myself for regular mammograms and ultrasounds and lose my breath every time I felt a lump in my breast. I was the one that may well have to undergo chemo or breast-removal surgery or face a shortened life expectancy (although, I couldn’t bear to think about that yet). I was the one that had to steel myself to do these things and there was no one else that could step in for me, much as they would have done so if given the chance. Right now, I was more encouraged by family and friends than ever before and yet I’d never felt so alone.

  And so, each evening, when everyone else went to bed, I’d make myself a strong cup of tea and sit up into the night with the only person I felt I could turn to: Dr Google. Desperate for information and hungry for answers, I trawled cyberspace. Information was a little thin on the ground at the time. (It’s amazing how much things have improved in just the past few years. Now you can access everything, from checklists of questions to take with you when you receive your genetic test results, to Pinterest sites that offer hairstyle ideas for each stage of growing out your post-chemo ‘do’.) Back then, things were a little more basic but this is some of what I learned:

  • Breast cancer is the most common cancer among Australian women: 14 940 women wer
e diagnosed with breast cancer last year (2013), which is about 40 per day.

  • One in nine women will be diagnosed with breast cancer before the age of 85 and it is the most common cause of cancer deaths in women.

  • For those who test positive to the BRCA1 gene fault, in most cases the lifetime risk of developing breast cancer is between 60 and 80 per cent up to the age of 70; or approximately five times greater than for a woman with no family history of breast cancer. And the risk is somewhere between 10 and 60 per cent for ovarian cancer. (To be told I had up to an 80 per cent chance of developing breast cancer put me in the ‘extremely unfortunate’ bracket.)

  • About 5 per cent of breast cancers are due to inherited ‘faulty’ genes. These faults or mutations take place in the ‘cancer protection’ genes (which, in my case, was in the BRCA1 gene).

  • Most people are born with two working copies of each of the different ‘cancer protection’ genes in their cells; these are growth-control genes that regulate orderly growth and division of cells. A small number of people inherit a change in one of the copies of one of their ‘cancer protection’ genes—that is, they are susceptible to uncontrolled cell division and growth—which means a higher than average risk of developing cancer at some point in their lifetime. (Why, hello there, that would be me.)

  • About 12 000 Australians are believed to be carrying the BRCA1 or BRCA2 gene fault (mutation) and research shows that 17 per cent of Australian women who test positive for the faults choose to have a mastectomy. (A sobering statistic.)

  • If these faults do lead to cancer developing, it may tend to do so earlier in life. Similarly, new cancers can develop in more than one place in the body. (I was seriously tempted to stop researching right then and there.)

  • In particular, BRCA1 mutations may increase a woman’s risk of developing ovarian and pancreatic cancer. (Okay, okay, enough already!)

  Then, just as I’d decided it was about time me and Dr Google parted ways, I stumbled upon this: Anyone who tests positive to the BRCA1 gene mutation, whether they go on to develop cancer or not, can pass their mutation on to their sons or daughters. And I realised, as I read it, that I may have already passed my faulty genetic makeup on to Riley. In reply to his saving my life (twice), I may have destroyed his.