My name is Ciara Priestly, I run my own company designing and manufacturing attractive and comfortable cancer headscarves and headwear for people experiencing hair loss (headscarvesbyciara.co.uk).
I have previously featured on UTV sharing my unusual story about my battle with breast cancer and the brca1 gene.
This is my first in a series of blogs where I will take you through my experience of genetic testing, breast cancer and hopefully provide some useful hints and tips for others going through similar experiences.
Now, back to the start of my story…
I am 26, 5 months pregnant and lying on my setee, blissfully unaware of the phone call I am about to receive which will change my life.
I answer the phone to my dad, he is ranting about a genetic test he thinks I should have, it’s for something called the brca1 gene, I have never heard of it before and by the tone of his voice it’s obviously something I would rather not hear
He explains, as our family history of breast and ovarian cancer is so strong (2 cousins and an aunt suffered from it), our family has been offered testing for this gene, its increases your chance of developing breast and ovarian cancer. He also explains that if I test positive for the gene I would be able to have my breasts and my ovaries removed! Wow – lucky bloody me I think!
I put the phone down and started ranting to my partner Keith – “Is he crazy??? (sorry dad if you are reading this) Why would he think I would even consider having my breasts removed?
I am 26! I’m not about to disfigure my body on the chance that I might get cancer”. Keith looks at me but knows I have completely “gone off on one” and knows not to say anything. My head is spinning with ifs and buts, I think “ignorance is bliss” I don’t want to know, I want to bury my head in the sand. In fact, I am about to find out ignorance is not bliss, it can kill you!
I suddenly feel very scared of the uncertainty ahead…
Ok so here I am, in the Ulster hospital waiting to see my genetic consultant. I flick through the magazines in the waiting room and wonder how I even got here (Probably the fact that I could get a few hours off work had something to do with it).
I have spent the last month deliberating over this test. Should I ignore it or be brave and have it?
One thing I keep thinking about is my little boy Jakob who is 6 and the baby I’m expecting. It would be stupid to refuse the test, for their sake I am wiser to be armed with the information.
I’m called into my appointment, have a quick chat and then a simple blood test. The consultant asks how I would like to receive my results – I tell him a phone call would be fine. He tells me to try and forget about the test and enjoy the rest of my pregnancy. I silently wonder if Jeremy Beadle is about to jump out from behind his desk flashing a microphone and camera in my face, telling me he was only joking – but no, this guy is actually being serious!
I’ve had my daughter, she’s 2 weeks old, adorable, 7lb 10 and like a little monkey, covered in hair and I couldn’t be happier. I am recovering well from a section, reacquainted again with sleepless nights and constant breast feeds.
My mobile rings and it’s the hospital asking me to come into the City hospital for my results. I politely tell the lady that I have just had a baby and had requested to receive my results by phone, she refuses to give them to me, when I ask why she simply states “I cannot give you the results by phone in case you need counselling”.
By no means am I the smartest cookie but it doesn’t take a brain surgeon to work out that I have the gene.
My consultant tells me that I have the gene, I have a little cry and he tells me my options. I can opt for screening. A yearly mri scan which will start when I am 30. I will be left to my own devices until then, no check ups etc – forgotten about I think.
Great, four long years to drive myself insane worrying about every lump or bump! If I wasn’t mentally unstable before I certainly will be after this! Suddenly the prospect of having my ticking time bombs removed doesn’t seem so bad. I tell my consultant I want to be referred to speak to someone about the surgery option.
Ok, I officially have the best breast consultants (what a mouthful). Stephen Kirk, my breast consultant, a man who is straight to the point (clearly a very busy man) but one who has substantial charm and charisma. I can’t help but like him from my first appointment, which is a good job as he is about to remove my breasts.
Stephen Sinclair (the magician as I like to refer to him) – my plastic surgeon. A quiet man but not to be underestimated, this man clearly knows what he is talking about. I instantly know I am in good hands.
The MRI Scan
Not a pleasant scan if you are claustrophobic but it’s over before I know it. Results will be with my consultant before my surgery I am told but they do not expect to find anything.
I am all set, my mind has been made up and I am just waiting for my surgeon to put me on the waiting list. Out of the blue I get a call from my breast care nurse, she tells me that my consultants have been talking and they feel that I should not have the surgery!
They feel that I am too young. That I should concentrate on finishing my family, enjoy the rest of my twenties and come back in my thirties as, after all, I am not at risk of breast cancer until I hit the big three o.
I am furious! I have spent the last six months going through appointments, getting results and deliberating over the fact that someone is going to remove my breasts, now someone else has taken the decision out of my hands.
I calmly explain that to the best of my knowledge this is a personal decision, after all it is my body and my breasts. She tells me that she will have a word with my consultant. I can’t help myself but to add “if my surgeon will not perform this operation I will find someone who will”. I laugh about that comment today – it’s not like I have surgeon contacts that I can phone out of the blue and they will schedule me in for a mastectomy but hey, it felt good saying it.
They must have realised that I was serious. I called the hospital every day for nine days and basically tortured my breast care nurse until she gave me the answer that I wanted, they would agree to perform the surgery. Victory!
The Lead Up
Am I crazy? I am about to lie on an operating table and ask someone to remove my healthy breasts on the chance that I MIGHT get cancer? People’s reactions say it all, “it’s a bit drastic” is my favourite.
I question myself constantly if I am making the right choice. I have even had the pleasure of encountering a rather unpleasant gynaecologist who vigorously questioned my decision. ” You are telling me that you are going to have a mastectomy because you MIGHT get breast cancer”? I reply “yes but I have an 80% chance of developing breast cancer, the odds are stacked against me and I am not prepared to take the chance”, after a brief examination he tells me that if he were me he would “seriously reconsider the mastectomy, it will be a huge mistake” and literally closes the door in my face! I feel like fly kicking the door open and calling him every swear word that I know, but I decide to sit in my car and cry instead.
This guy is a surgeon and even he thinks that I am crazy to have this operation. I am so unsure about what I am doing but very sure about what my gut feeling is.
I have recently gave Poppy her last breast feed in preparation for my surgery. No matter how much I double guess myself I keep going back to the same thought – “I will drive myself crazy with worry if I don’t have these removed”.
I will be kicking myself if I don’t have this done and I get cancer.
The Day Before
I am admitted the day before my surgery. I have my own room, a tv, and a bathroom – luxury! I could easily mistake it for the Hilton apart from 1) the food is awful, 2) the nurses don’t carry your luggage, 3) the parking isn’t as expensive and 4) the surgical stockings you wear in the hospital are NOT the same as the one’s you would expect to wear in the Hilton.
I have settled relatively well, Keith and my dad come up to visit me and we all try to ignore the big pink elephant in the room, the reason that I am actually here. My friend joins us and we all laugh until the nurse comes into the room to tell us to keep the noise down and that visiting hours are over. We all exchange hugs and kisses and before I know it I am on my own.
“The magician” arrives to mark my breasts and ask me to sign my consent form, I make numerous jokes about waking up with amazing breasts, we both know these are nervous jokes to deflect away from the fact that I am really frightened.
The operation went smoothly… as far as I can tell; after all I was asleep at the time. I have a faint and distorted recollection of coming round in the Recovery Room and the next thing I was aware of was waking up back in the ward with my mum and Keith looking anxiously at me.
I remember feeling really out of it but not feeling any pain – thanks to the morphine drip attached, when the nurse told me she was going to put a catheter in I happily announced to anyone who would listen how much I loved catheters! Oh the shame, but mum and Keith did their best not to laugh at me.
I am surrounded by drips, lines and breast drains but I finally manage to get some sleep…
The Day After
Ok, I am a very sick girl today. Thanks to the morphine and the fact I haven’t eaten in about 36 hours. I try to eat a piece of toast whilst retching at the same time, not a good look I am sure.
The nurse tells me she is going to take me down for a shower – I try my hardest not to laugh in her face, I can hardly muster the strength to burp – I certainly am not getting a shower. She tries her best to encourage me, she actually manages to get me out of the bed but I sit on the chair beside, pull a blanket over myself and fall asleep – I think this is going to be a long recovery!
After four days of my breast being poked and prodded by the white coats I am finally declared well enough to go home. I still have one breast drain in but am told that I can return to the hospital in a few days to have it removed.
Two Weeks Later
I have spent the last two weeks recovering at home, the weather has been great, the kids are delighted I’m back and I feel so relieved that the surgery is over. I can’t believe I’ve done it, I’ve actually had my breasts removed but to be honest I am quite happy with the results. I have two neat implants with a scar through each nipple but the main thing is I now have less than 2% chance of developing breast cancer and it feels great.
Only job left to do is return to the hospital tomorrow to have my stitches removed and then I can put this all behind me.
I arrive at the hospital to have my stitches removed, I am called by my breast care nurse, she asks if I want to bring Keith with me? I laugh – he is trying to occupy Jakob whilst Poppy is sleeping in her pram, I tell her I will leave him to the babysitting duties.
We start walking down the corridor together and she says the most bizarre thing – “Ciara, do you realise that we sent your breast tissue off to pathology”?
“Er, yes” I reply, then she says something that chills me, she says it very slowly, as if I am not taking this in properly. “Do you know what that means”?
Suddenly it hits me like a truck what she is actually trying to say… “They’ve found something, haven’t they”?
“I will let your surgeon talk to you about that,” she replies. “No, tell me now, I am on my own, tell me,” I say.
She suddenly says five little words that are about to throw my life into turmoil…
“I’m sorry – You have cancer.”
Due to my own personal experience with cancer and hair loss I now have my own business designing and manufacturing beautiful headwear for people experiencing hair loss. This includes headscarves for hairloss, cancer hats and caps and also bespoke hats. Please check out headscarvesbyciara.co.uk