When I walked out of Bronwyn’s clinic that day it was with my mind made up. To be fair to my kids, and to be fair to myself, I had to do all that I could to prevent myself from getting breast cancer. And that meant preventative surgery. I went home and told Mum and Chris my decision. Then I phoned Dr Kathy Tucker that afternoon and asked her to recommend some breast surgeons for me. I was not looking forward to this—hell, I wasn’t even sure I could really go through with it—but I realised now that this was about many more people than just me and so I had to try.
CHAPTER 14
For as long as I’d known him, Chris claimed he was not a ‘boobs man’.
‘I like your boobs, I really do,’ he’d tell me earnestly. ‘The trouble is you’ve got this incredible, bootylicious, Latino-style bum! For me? It’s all about your bum, babe.’
Coming from anyone else, this might not sound as sweet as it did coming from Chris. The problem was, I was about to put his words to the test.
I was booked in to have my breasts removed in five months time, on 20 March 2009. My healthy, 25-year-old, cancer-free breasts. At the recommendation of my surgeon—breast and endocrine specialist Dr Mark Sywak—I was to have bilateral (double) skin-sparing total mastectomies which would remove my nipples, areolas and all possible breast tissue from both breasts. The only things left behind were to be my underarm lymph nodes and my chest muscles, which would help hold my implants in place once my new breasts were implanted, if implants were what I opted for. (The alternative was to have a subcutaneous mastectomy, where the breast tissue is extracted but the nipples are left behind. But I could see no point going through the pain of having my breasts removed without removing all possible chances of cancer, and this is what leaving my nipples intact would mean, in my case.)
During my mastectomy operation, doctors would also begin the (long, slow) process of reconstructing my breasts. My plastic surgeon, Dr Megan Hassall, would be on hand to insert tissue expanders into the cavity where Dr Sywak had removed all the breast tissue. These were a temporary measure—inserted to stretch the muscle and tissue to make way for implants further down the track—but they were the first crucial step towards re-creating a new set of breasts for me.
And, oh, it all sounded so easy and methodical! The way the information pamphlets described it, you’d think we were knocking up a piece of Ikea furniture. Simply remove A from B, insert C and, presto, you’ve got D! Throw me an allen key and let’s get started! Don’t get me wrong; I understood that, for the medical team, they were knocking up a piece of Ikea furniture in that this was their job and they needed to have a certain amount of professional detachment in order to do the amazing things they did every day. And I have nothing but the highest, highest praise for all of the medical treatment I received at the (very skilful) hands of Dr Sywak and Dr Hassall and just about everybody else I came across during my BRCA journey. No, it wasn’t that simple at all.
It was just that medical terminology such as ‘subcutaneous mastectomy’ seemed a world away from what we were actually talking about here. We were talking about cutting off my breasts. My boobs. Pieces of my own skin and tissue and membranes that, at this moment, still had my blood pumping through them. Breasts that were mine and had been mine since I hit puberty. These were breasts that had filled my bras since my training bra days. Breasts that been felt up by my boyfriends and admired by my husband; breasts that had held up my wedding dress and that had fed my children. Breasts that had, despite it all, been handed down to me by my family line. I was choosing to surgically remove my breasts even though they were young and healthy and free of all cancer.
Deep down I was terrified I was making the wrong decision.
Where I knew I’d made the right decision, however, was in choosing Dr Mark Sywak as my surgeon. Of all the breast and endocrine specialists I met, when considering who should perform my mastectomy, Dr Sywak was easily the best looking. He was vaguely reminiscent of Keanu Reeves, circa The Matrix films in the late 1990s/early 2000s. And if I was going to have someone fondle my breasts in the name of science then, dammit, I wanted that someone to be hot!
Of course, it only added to Dr Keanu’s—sorry, Dr Sywak’s—appeal that he was so delightfully prim and proper in his bedside manner. A true professional. During one of my first appointments with him, when he was poking and prodding and assessing my naked breasts, I joked to the top of his head: ‘You know, this would be a lot less awkward if you weren’t so good looking.’ He was so surprised I thought he might actually go through the floor.
But the greatest thing Dr Sywak gave me (aside from peace of mind about his surgical skills, and something to look at during my pre-surgery appointments) was kindness. I walked out of his surgery knowing I was making the right decision. For once in my journey I was confident. I still remember the day he put a hand on my shoulder and said: ‘I can’t say that you’ll definitely get cancer in your lifetime – no doctor could – but with your family history and with your BRCA gene fault, you’re in the high risk group.’ It was the greatest thing he could have done for me because, at that stage, I was still so terribly unsure.
And yet I pressed on. As part of my preparation for surgery, I had to continue my routine of regular ultrasounds and mammograms in order to monitor my breast health.
‘Gotta keep abreast of my health,’ I joked to Dr Megan Hassall and, generously, she had laughed. Megan has a wicked sense of humour and has developed quite a rapport with our family over the years. She was the plastic surgeon who performed Mum’s bilateral breast reconstruction and so she must have felt some sense of déjà vu at seeing me walk into her surgery and request a recon twelve years later.
My appointment with Megan that day was to discuss the reconstruction process and to run through my options in terms of my new breasts. Silicone versus saline implants? Teardrop-shaped versus round implants? Or avoid implants altogether and opt for reconstruction using my own skin and fat (known as tissue flap reconstruction)? And, if so, attached flaps or free flaps? And where to get the fat from? My back? My bum? My abdomen? (Now, there’s a thought.) And what about nipples versus no-nipples? The choices were mind-boggling. Who knew, for instance, that if I opted for nipples with my reconstruction I could have them tattooed on (to match the colour of my original areola) or attached via a nipple prosthesis (which attaches the nipple using glue)?
All of this was a world away from the options faced by earlier generations of women in my family. That is: they had no options.
As I’ve mentioned, when my nan had her mastectomy, breast reconstruction simply didn’t exist so she went into hospital with breasts and came home with a barren chest and a packet of rubbery prostheses that she had to slip into her bra each day. (As time went on Nan’s chest collapsed inwards to her ribs on one side, leaving her horribly disfigured and lopsided.) And for her mother it was even worse. Great-grandma Annie had to make her own DIY breast prosthesis, which she did by filling flesh-coloured stockings with bird seed then tying them off and sticking them into her bra to pad the cups out. Can you imagine what it would feel like to have spiky bird seed rubbing against your (scarred) chest all day? Not to mention the fact that, when she sweated, the bird seed started to sprout, sending out little green shoots like fingers. It would be comical if it wasn’t so terribly sad.
I was lucky my greatest dilemma was deciding which exact shape of highly developed silicone implant I wanted (if, indeed, I wanted silicone at all). But, even so, I was relieved I had Megan and my mum on hand to help guide me through it. What I didn’t have, though, was anyone my own age (aside from Lindsay, half a world away) that I could turn to.
In her surgery, Megan had an impressive black, leather-bound portfolio of images of the successful surgeries she’d carried out over the years. This book was full to bursting point with the images of hundreds of women, all at various stages of breast reconstruction, showcasing the different options available to me. There were women with artificial implants and women who’d obviously had sin
gle-side lumpectomies and women who’d had complete bilateral mastectomies; women with minimal scarring and women whose breasts looked like a war zone before Megan got to them. But wait—
‘Where are all the younger women?’ I asked her, flicking through the pages looking for the section I couldn’t find.
‘There are no younger women, Krystal,’ Megan said gently. ‘Breast cancer is quite uncommon in women less than 30 years of age.’
‘Oh, sure.’ If I’d learned one thing from the family cancer clinic and their 30-plus screening regime, it was this. What I meant to say was: where are the images of women my age who were getting preventative surgery? I was specifically looking for pics of girls like me who had opted for a pre-emptive double mastectomy, rather than pics of those who’d had surgery because they’d already contracted cancer, because the end results could look vastly different. A woman who has had a lumpectomy to remove a tumour, for instance, might have significantly more scarring than I could hope to expect. Not only was I trying to get the most accurate idea of what I might look like post-surgery; the one thing I didn’t want to do was look at any post-cancer-breast-recon horror stories. As if I wasn’t scared enough!
But when I explained this to Megan, she looked momentarily confused.
‘No, I don’t think you understand, Krystal. There are no younger women, full stop. Women your age aren’t commonly having this surgery in Australia yet. It’s still considered radical.’
I was so surprised that it took me a while to decipher what she was saying.
‘Are you saying, for my age, I’m one of the first?’
‘You’re one of the first.’
I shut the book in my lap. Up until now I guess I had known, rationally, that risk-reduction breast removal surgery was unusual. Aside from anything else, the bewildered reaction I got whenever I mentioned to anyone that I was choosing to remove my healthy breasts was enough to tell me it was pretty extreme. Then there was the fact that I’d had to look outside Australia just to find someone else my age (Lindsay) who’d already been through it. Hell, Medicare doesn’t even have an item number for the BRCA gene test so preventative breast surgery is hardly going to be high on its list. It was that rare in Australia. In fact, when my mum and my nan were both tested for the BRCA gene mutation back in 1999 and 2000 respectively, they were two of the first people in Australia to undergo such genetic testing. The gene itself was only discovered as recently as 1994, at the University of Utah, and so in 2008 in Australia, BRCA testing, and the associated medical response, were still only developing.
But knowing something and really getting it are two different things and, leafing through Megan’s portfolio that day, suddenly I got it. I was out on a limb with this surgery and feeling very, very alone.
I handed Megan’s book back to her. There was no point leafing through it if all the before-and-after photos were of middle-aged women (most of them post-cancer-surgery and all of them post-40). Sure, I’d breastfed two children so my boobs were hardly the perkiest in my peer group. But at 25, all of my girlfriends and I had some way to go before we were as saggy and well-loved as the women in Megan’s book. I was hardly going to find the breasts I wanted in there.
And still, it seemed bizarre to me that—in an era when the media is saturated with images of bright young things flashing their boobs (have you ever watched music videos on TV on a Saturday morning?) and when Hollywood gives women a use-by date of about 40—I couldn’t find a naked photograph of a 20-something woman who’d had a breast reconstruction. But that was the reality. Back when I was having my preventative surgery (and we’re talking 2008 here, people; not exactly the dark ages), it was radical for a woman under 35 to choose to remove her breasts in Australia. No one was doing it, no one was talking about it and certainly no one was taking any photos of it. It was happening quietly, if at all.
I wanted to open up Megan’s book and see other girls my age; girls who’d had this surgery and who’d come out the other side unscathed. But I couldn’t even get that small comfort. Yet again, this was a journey I had to navigate on my own and, yet again, I felt incredibly isolated.
Megan was hugely sympathetic and said she wished there was someone—anyone—she knew who was my age and had undergone risk-reducing surgery so that she might put me in touch with them just to have a chat. But there simply wasn’t anyone she knew. (These days I’ve given Megan strict instructions that any of her younger patients can call me if they’re in the same situation and they want to talk to me. I left her a stack of business cards with my contact details on them and I’ve had numerous phone calls as a result. Every conversation starts the same way: ‘Hello? Is that Krystal? I know this is random but Dr Hassall gave me your name and I just wanted to ask you …’ It’s such a little thing to be able to do for someone but I would have killed to have received support like that.)
In the end I opted for teardrop-shaped silicone implants. I was told I didn’t have enough fat on my abdomen for it to be used in a TRAM (transverse rectus abdominus myocutaneous) flap reconstruction (and what woman wouldn’t pay to hear that!) so implants were my only realistic option. Where I did have a choice, though, was size. And just like Oliver Twist: please, sir, I want more! After much discussion Megan agreed to upgrade me from a 12B to a 12C, so that I would come out of my reconstruction one size bigger than my natural breast size. Finally, having lived under the dark cloud of cancer all my life, here at last I had found a silver lining.
New breasts selected, Mum and I were back at Royal North Shore Hospital the following week for a routine mammogram on my original models. It was now November and, in accordance with the high-risk screening program, mammograms were carried out annually so this was the last screening I had to have before my breasts were removed in March.
‘This is the final time you’ll be seeing me,’ I said to the mammographer, chatting away blithely while she concentrated on the screen in front of her. I’ve always found it impossible not to be friendly to people when they’re helping me out in some way, like cutting my hair or packing my groceries or fixing my car or handling my boobs. ‘I’m having a preventative double mastectomy next year so you won’t see me back here any time soon!’
The radiographer baulked momentarily at the shock of what I’d just said. I guess it’s not every day she saw girls my age come in for a mammogram, let alone announce they’re lopping their breasts off. Then she smiled. ‘Really? That’s great news. I’d be happy if nobody needed a mammogram—even if it would put me out of business!’
Minutes later, I was fully dressed and back in the waiting room with Mum, ready to head on up to see my breast surgeon from the high risk clinic, who was responsible for monitoring my progress through the family cancer clinic. But before I could, the radiographer appeared and motioned for me to return to the imaging room.
‘Krystal, do you mind popping back in for a few more quick images for me? It won’t take a minute.’ This had never happened to me before. I frowned at Mum.
‘Sure,’ I shrugged. ‘Is everything okay?’ I could feel my heart beginning to race even before the words left my mouth. I was discovering that ‘Is everything okay?’ was not a question I generally liked the answer to.
‘Of course,’ she assured me. ‘I just thought that given this is your last screening before your surgery, it would be prudent of me to take some extra images.’ The radiographer wouldn’t, I noticed, meet my eyes when she said this.
So I returned to the imaging room and removed my top and dutifully lined up to have my breasts photographed some more. Then back out into the waiting room before Mum and I were released upstairs, in order to see my doctor for a debrief. But again things didn’t go according to plan. Although we were running late by the time I got to her rooms, the doctor was running later still. ‘She won’t be much longer,’ her receptionist assured us as she caught me checking and rechecking the time on my phone at obsessive intervals.
‘I’m sorry,’ I explained. ‘It’s just that we’ve got
to pick up my sons from preschool shortly, so we’re really going to have to go. Would you mind telling the doctor that we stayed as long as we could?’
The receptionist shook her head. ‘There’s a note on your file here that says she really wants to see you.’
Must be because of my preventative surgery, I thought optimistically, glancing at the clock on my phone yet again. Riley and Jye would be waiting for me to arrive at preschool soon and, if I was late, I could picture the scene in my mind. The boys would be hanging around by the front fence near the sandpit, backpacks on and artworks in hand, forlornly watching on as everyone else’s mums arrived to pick their kids up and wondering if their own mum was ever coming back.
‘What if I rebook for another time ahead of my surgery?’ I suggested. If we didn’t get on the road soon, I’d have the preschool director on the phone asking where I was.
‘I don’t think—’ began the receptionist but she was interrupted by the blonde doctor bustling out of her room. Usually, she was a confident straight-shooter, and I liked that about her. But today she seemed flustered.
‘Krystal! Julie! I’m so sorry I’ve kept you both waiting. Come in, please, and grab a seat.’ She shut the door behind us with unintended force and it had the effect of feeling like she was locking us in.
‘Doctor, I’m afraid we can’t stay—’ I started to say but she cut me off with the flick of her hand.
‘Krystal, I’ve got news. We’ve found something …’ Even before she finished her sentence, I knew she meant cancer.
The Lucky One Page 16