The website has been set up by two women from Northern Ireland who are BRCA gene carriers. They were put in contact with each other through the Northern Ireland Regional Genetics Service. This evolved as a result of their personal experiences while wanting to improve communication for BRCA carriers in NI. The website is a means of both contacting others and of accessing information and relevant research.
Some women have agreed to share their experience of the Hereditary Breast Cancer Gene. If you would be interested in adding yours to the site please forward to firstname.lastname@example.org Alternatively if you would like a chat please email Hazel at the above email address.
My name is Ciara Priestly and I am now 29. When I was pregnant with my second child I was offered genetic testing for the BRCA 1 gene due to a strong family history of breast and ovarian cancer. After much thought I decided to take the test. Two weeks after giving birth to my daughter I was called back to see my consultant, he advised me that I had tested positive for this gene and what it would mean for me. My chances of developing breast cancer would increase to 80% and my chances of developing ovarian cancer increased to 40%. I was offered 2 options, one was to opt for the screening which would include a yearly scan, but this would not start until I was 30, I was only 26 at the time. Secondly I could opt for a prophylactic mastectomy which would basically mean having my breasts removed as a preventative measure. I was devastated but I felt that now I had this information I would be selfish not to use it as I had two young children to think about. I felt that if I opted for the screening I would always be worried if they had missed something or I would just be waiting to develop this horrific disease. I decided to opt for the surgery.
After having numerous appointments with consultants I seemed to reach a brick wall- my consultant felt that surgery was not the right option for me, he felt I should enjoy my twenties and come back in my thirties to have my surgery. I was shocked but pushed on telling them that it was a personal choice and I would probably drive myself crazy with worry if I didn't have it done soon. They finally relented and I was scheduled for my surgery. I had an MRI scan of my breasts before which was thankfully all clear. I proceeded to have my surgery despite people thinking I was crazy, including my mum who couldn’t understand why I was having my healthy breasts removed because I MIGHT get cancer. The surgery went well and I went home to recover. Two weeks later I returned to the hospital to have my stitches removed. I was met with the sobre consultants and breast care nurses, still nothing twigged with me. I was then advised that when my breast tissue was sent to pathology they found that I had a grade 3 breast cancer which the MRI scan had not detected. I was shocked to my core! Everything moved quickly from then, I was scheduled for more surgery 4 days later to have my lymph nodes removed. The prospect of chemotherapy hung over me like a black cloud- when I asked my surgeon if he felt it was necessary he replied "my main concern is to keep you alive, you are 26 years old and if this had not of been found for another 6 months we could not of treated you, you are a very lucky girl that you pushed us to have your surgery", I felt sick to my stomach. I had 2 babies at home who needed me
A few weeks later I started my chemotherapy, it was horrendous, I was extremely sick and lost all my hair within a few weeks. My household was turned upside down but we manage to get through it.
When my chemo finished I decided to have an "end of chemo party", we used is as an opportunity to raise money for cancer research. It was a very happy occasion to feel like I had reached the end of my treatment, little did I know my journey was far from over..........
As the BRCA 1 gene affects both breast and ovarian cancer I was being monitored in relation to my ovaries- I had regular blood tests and scans, my blood tests used markers called CA125 levels, if they go above a certain level it indicates that something may be developing. Two days after my end of chemo party I received a phone call from my consultant to tell me not to panic but my levels had shot up quite dramatically and I had to go into hospital the next day for a scan! I attended the hospital, had my scan but they could not find anything, my consultant said to me "taking into account what happened with your breast cancer I am not prepared to take any chances, I want to admit you for a radical hysterectomy". I was admitted the following month and thankfully everything went ok.
The last few years have been extremely difficult but I chose to tell my story to raise awareness of this gene and also that cancer sufferers are not always within the ages expected! I was extremely lucky.
January 2009 heralded a new year & fresh beginnings for my family and I. Very soon into the New Year we discovered that our world would be turned upside down when our mother was diagnosed with stage 3C ovarian cancer - treatable, but not looking hopeful.
Within 8 weeks of diagnosis the Bridgewater Suite at Belfast City Hospital became home to our family for monthly visits, trying to ensure my mother fought the disease & gave life her best shot.
Through enquiring into our family history it was readily thought that my mother was a BRCA carrier, after a simple blood test it was determined that she was BRCA 2 - she's the 6th in her immediate family to have cancer - 3 others are also believed to have been BRCA carriers - 2 had both ovarian & breast cancer (our mother was diagnosed with breast cancer in November 2009 also) and 1 with prostate cancer.
So to my diagnosis, 6 weeks after mummy was told she was a BRCA 2 carrier myself and one of my brothers were given the same news....devastating to begin with but we quickly adjusted. My brother was very concerned for his two daughters & for me in the future, whereas I could only think of how I was going to tell any future partner this news?!
At that stage of my life (29) I was very much single - I remember joking with Dr Alex McGee after she passed on the results of my genetic testing that I'd need to find Mr Right Now as opposed to Mr Right, little did I know that a few weeks later I'd find Mr Perfect waiting in the wings.
I thought that passing on the information to my new boyfriend wasn't going to be easy, I'd worked myself up thinking that he wouldn't understand and that he couldn't understand as it wasn't him having to live with this news. He was reassuring, understanding, compassionate & loving, as he always is - telling me that "we would both get through whatever the future held".
We're getting married in early 2012 and have decided that starting a family is something we both want and once we feel our family is complete we'll opt for surgery, he says he wants "us" to rear our children and he doesn't want to have to watch our children grow up without their mother and him not to have his wife.
Our mother is still around, battling away and making the most of life. She suffers from dementia also which we believe has led to her surpassing the prognosis given to her in early 2009.
Regular screening is a gift to me, I feel I'm lucky that I'm being "watched" by my GP, the Genetics Team in Belfast and the various other Doctors who call me for assessment throughout the year. I could have rambled through life without this diagnosis & been dealt a cruel blow in time, however now I've a great support network keeping an eye on my health, both mentally & physically, and anything that could show up would be detected at an early stage, prolonging my life and ensuring that I do see our children grow up.
For me it's a simple decision - BRCA won't rule my life therefore I plan, in the next few years to opt for full surgery. Everyone is different & has a different story to tell - thank you for sharing mine.
Maggie x August 2010
I sit here 8 weeks post surgery reading back over the account of my operation, the day of surgery and the three days that followed. I am amazed at how long ago it seems and how far I have come since. I never considered writing my account before this, but when I was diagnosed with the BRCA gene and had made the decision that I wanted to have risk reducing surgery I looked for blogs and stories of what it had been like for the woman who had gone through this operation before me.
I was touched by what I read, their stories and experiences, their feelings and their emotions. But I am the type of person who wants the A,B and C and the 1,2 and 3 of what this operation entails. I acknowledge that everyone's experience is and will be different but this is mine, no holes barred and I haven't held back in being honest. I hope that in sharing this experience it prepares someone coming after me for what might be a similar experience. A little bit of background to start, I was lucky in so many ways that my sister had been through this operation a few years before me and she kindly shared her experience and knowledge of this process and guided me so much, I truly appreciate her support and hard work. In the pre-op consultation I had an internal examination, which to my surprise showed I was suffering with endometriosis, I had a cyst on my right ovary and a dropped womb. I was made aware that this may well have an impact on the day of the operation so armed with all this information and knowledge I started the process of risk reducing surgery. Letters in hand and date set 7th of February 2012 arrived.
Happy Birthday to me (yes it really was my birthday) 7.30am - I arrived at the hospital, having to fast from the night before and being someone who wakes up hungry and a coffee addict, was dying for it to be a normal day and have a coffee and bowl of cereal but not today. It was finally here after all this time; 18 months after deciding on the surgical operation I arrived at Belfast City Hospital and was instructed to report to the day of surgery to a ward were I was met by Linda who was to admit me. She took all my details and gave me 2 tags, one for each arm. As my blood had been drawn at the pre surgery appointment 8 days before I presumed it was ok, but as I was past a 7 day cut off and it needed to be taken again. Linda made me feel very comfortable she was friendly and reassuring, relaxed and very normal which given the situation, I was in was quite a talent. She took my mind of the surgery and even managed to make me laugh!
The breast surgeon who was performing my breast surgery and reconstruction came through to see me with his registrar, he talked about the risks involved with the surgery. As much as I was aware of these it was a scary experience to hear them all again, the risk that my bowel or bladder may be punctured during surgery was not a thought I relished and something for everyone to prepare themselves for hearing. I signed the consent form, after all my mind was made up and there was no going back. The Registrar then asked me " do you know why you are here?" stupid question I thought, I knew I wasn't here to get my tonsils out, but then I realised that as part of the admission paperwork I was required to say the reason I was here. Although it was a perfectly simple question, It threw me a little and I stuttered "for a double mastectomy and a hysterectomy as risk reducing surgery ".....as easy as that it seemed. The registrar told me there may be a chance that they may take my ovaries, this caused me my first panic of the day. I was under the impression they were taking my ovaries and all the risk would be gone. I asked Linda to check for me, she came back and reassured me this was what I was booked in to have done and the ovaries were going as well. The registrar asked me about the BRAC gene and my family history, which frustrated me so much as I had been through this story so many times to so many people over the months before the surgery.
I was then given the fetching hospital gown and surgical stockings, what a sight! The registrar explained he would mark out my breasts for surgery, he sat on a chair and I stood in front of him and he made the lines around my breasts were the surgeon would cut, just like it's done in those extreme makeover shows, which I suppose was what I was having today, but thankfully there was no TV camera following me around. My coffee craving was now kicking in big style, one of the nurses advised that some patients gargle the coffee in the morning to make them feel better, handy little tip for coffee addicts pre surgery. Although I felt calm, nerves were setting in as I needed to go for a pee a few times, or maybe it was just the cold from sitting in the gown, so the zip up top I had come in wearing was a real treat. My partner was allowed to stay with me during admission which made the process so much easier and I felt supported.
On the day of surgery the ward had 5 other people waiting to go to theatre, as it's just one ward and curtains are the only form of privacy between patients you can hear everything that's going on, theatre were calling about consent forms, other people were going over their admission paperwork with the nurses and the ward was a hive of activity. The anaethetist then came to see me, she asked me some questions to ensure I had been fasting, what medications I took, do I smoke etc. Be prepared these questions are asked repeatedly before surgery. 9.15am- It's a bit like a lucky dip waiting to see which patient will be taken off for surgery first, the porter came along and I was the first one to go this morning, thank God as I just wanted to get it started. I got on the bed and it felt weird as I was wheeled out of the ward. Linda came too and my partner was able to walk with me to the theatre doors, we chatted on the way which was relaxing and a welcome distraction.
As my partner left and the back of their head disappeared from view I knew this was it and I took a massive deep breath and went with it. The porter wheeled me through to the anaethetists room; there were so many cupboards with tablets and medication. The anaethetist was busy getting an injection ready, she introduced me to another anaethetist who would be with me during the operation and two nurses, one of whom was a student. They were so nice and made me feel very comfortable, chatting away to me about my job. I was suddenly freezing, nerves perhaps. The Anaethetist was flicking the syringe and the bottle with fluid she was about to give me, the nurses then put little surgery pads on my shoulders, back and chest. They noticed the tattoo on my side and asked me about it, again this took my mind of my surroundings. I was then wheeled into a very cold, clinical theatre room. I looked at the bed they wanted me to get on, it was exactly the same as the beds I had seen on TV with dead people lying on them, that was it....panic was in full swing and everything was very real. The cables were now attached to my body.
The nurses made me laugh telling me they had warmed the bed for me. The anaethetist was now slapping my hand for veins, then a large thick oxygen mask was placed on my mouth, it was very constricting and I wanted more than anything to pull it off. I felt a jag in my hand and I felt relaxed and sleepy, within seconds it was as if I had fallen asleep. 3 pm- I woke up in recovery and the nurse was saying ' hello Claire' I don't think I even woke up, I remember my eyes rolling in my head and just wanting to sleep. My chest felt very tight and my stomach very sore. The oxygen mask was still on and still very constricting. The nurse asked me on a scale of 1-10 how bad the pain was at this stage. I said it was 7 so I was given pain relief. As I started to come round the pain hit me and was now a 9 on the scale, for someone like me who would consider myself to have a high pain threshold and who had lived with endometriosis for quite some time and put it down to bad period pains, this was bad! I was given morphine now for relief. My facial expression must have showed my level of pain and the nurse then asked me again about the pain and I was given further pain relief through a drip.
I felt the staff were keen to get me out of recovery and up to the wards I was the last one there. My mouth was extremely dry due to the oxygen mask, I was gasping for water and asked the nurse so she wet my mouth and lips with a lollipop sponge, it was bliss. The pain was now in every breath I was taking, the best comparison I can offer was a serrated knife, cutting bread when I inhaled. I don't think anyone quite understood how much pain I was in. I continued to go in and out of sleep and was so drowsy and as much as I wanted to wake up I couldn't. The pain can only be described as excruciating and although I felt I had prepared myself for what it might be like, this exceeded all my expectations. 5pm- I was wheeled up to the ward and put in bay A, I must have managed to sleep a little and woke up to my partner sitting by my bedside, I felt reassured it was over now.
The next 3 to 4 hours were a real blur but I clearly remember the pain in my stomach and pain when breathing. During the evening the morphine was starting to work and I was pulling the mask from my face to talk to my partner, the nurse informed me my oxygen level had dropped a little and I needed to keep the mask on. I was tired and sore but aware that the nurses were performing observations of blood pressure and checking my wounds every half an hour. As the consultant had previously told me that the endometriosis might cause complication with the surgery I knew this was the crux of pain. I felt embarrassed by my situation and how I looked at that time, I was aware that I was wearing a gown which didn't leave much to the imagination I asked for the curtains to be drawn. Visiting time ended and I slept for a few hours.
When I awoke I pressed the buzzer for the nurse, the pain had peaked and I was struggling. I asked for morphine as I knew this was the only thing that had helped earlier. I was given an injection in my bottom which was both a blessing and a curse as to get the injection involved rolling on my side, which felt like having to walk a tightrope or run an assault course right at that moment. I had to grab the bars on the bed and roll, the pain was everywhere. This morphine coupled with the earlier paracetamol I had received through a drip put me to sleep for about 2 hours, 12am - I woke up and the level of pain had again increased and I now felt like I couldn't breathe, I pressed the buzzer again and the nurse said I couldn't be given anymore pain relief. I knew I needed more and there was no way I could be in so much pain, the nurse was so helpful and she could see the pain was causing me to cry so she called the doctor. I never cry in public. It felt like forever but the doctor arrived about 20 minutes later and she examined me. She felt my tummy and I couldn't even bear her fingers on my skin, she nodded to the nurse and I was given more morphine. Over on my side I went again. It was worth the battle of rolling over and I was rewarded with the pain easing enough for me to fall asleep.
DAY 2 I woke up today, no idea of the time or length of time I slept. The pain continued so I was being given IV paracetamol, codeine and morphine but less frequently now. I was left a jug of water which I wanted so much due to my mouth still being so dry, I couldn't reach the jug or lift the jug never mind get it to the glass. The Nursing Assistant was so helpful she poured my water and even gave me a straw to make it easier. I had 5 drains, 2 from each breast and one from my stomach and I had a catheter in also. As much as I had dreaded a catheter with hindsight the thought of having to move to the toilet would have filled me with dread. The drains hung by my bed on both sides of my bed. I couldn't bear to look at the contents. But everyone kept saying how much better they were as time passed. I was starting to feel nauseous and the smell of food in the ward was so over powering to me, even the smell of my beloved coffee was turning me green.
The nurse came round and gave me a bed bath and removed the catheter. The nurse then changed me from my hospital gown to a nightdress, pants and a pad because I was bleeding a little, similar to a light period. The gynecological surgeon came to see me, I explained to him about the pain, he told me that the endometriosis was attached and stuck to my bowel, ovary and fallopian tube and that my right ovary had been useless. He explained the pain I was experiencing was from all the endometriosis having to be removed before the hysterectomy could be carried out. He said it had been quite severe but they had still been able to perform the surgery by keyhole, I had obviously been in good hands. Then it was visiting time again, my sisters treated me to a pamper, washing and moisturising my face and massaging my feet. The lack of privacy on the ward was starting to bother me, I wanted my curtain drawn at this time and the lady in the bed to me was prone to farting and burping......Little did I know at this stage the same fate was to fall on me. Now I can laugh but at the time with feeling sick it really wasn't helping me.
I was still in a lot of pain and felt like I was drunk and sleepy with the medication, I was really keen to rest but the buzz on the ward was too much. My friend brought me ear plugs and an eye mask, I could not have asked for a better present. I managed some sleep even with the pain. I had slept my first full day of recovery on and off. Day 3 I felt a little more positive on waking this morning, the pain was still there in my stomach but I was now coping on IV paracetamol and was slowly turning a corner. I was cold and asked the nurse for a blanket, she took my temperature and it was a little raised . I was alarmed as I had read about so many women before me having infections, I was given antibiotics straight away and my temperature was monitored. As soon as the paracetamol went through my system the chills eased and I felt better. That afternoon the nurse came to remove the drain from my stomach, this experience will stay with me forever, the pain was awful and ripped right through me travelling from one side to the other. But at least it was out. I managed to have a wash and change my clothes with the help of Sharon my partner, it was slow and uncomfortable and took it out of me but I was determined. Somehow its easier having someone you know help you do personal things. That evening I walked to the toilet although I was still exhausted I felt brighter and I knew things were on the mend for me and the worst was behind me. I leave my story there as I feel all the other blogs explore what happens after surgery, happy reading.
Things you need to know and expect:
*Don't be afraid to ask for pain relief *Ask for help with pouring water etc *Bring an eye mask and ear plugs *Bring Ribena or squash *Bring lip balm and dry shampoo *Nighties are great for the first few days, pyjamas with buttons after, one size up on both bottom and top for swelling are great after a few days. *You will suffer with wind and constipation and you will look forward to the lactulose and u will pass wind with no embarrassment only a sense of relief. *Drink as much fluid as possible slowly *Practise sleeping on your back before you go to hospital *Don't be afraid to pull the curtain on the ward *Bring slip on slippers *If you are having a mastectomy be prepared that you can't have a shower for 2 weeks *Bring face clothes and hand towels *Bring money for 3 day TV credit as it's a great distraction *Bleeding when you return home is normal Just go with it, listen to your body and set yourself small goals, don't push yourself too hard. My story may seem harsh but on a brighter note I am now returning to work and am in training for a 10k race. The consultant is delighted with my progress and I have learned so much about myself in this short period of time so it's not all bad and more than anything the sense of relief I feel is immense, Just remember, small steps lead to big steps.
In May 2004 my Mum’s sister (aged 54) was diagnosed with grade 3 breast cancer with 2 lymph nodes and pectoral muscles affected. She had a radical mastectomy, chemotherapy and radiotherapy. Although we have a strong family history of cancer (including ovarian) she was the first with breast cancer.
Then in September 2009 my Mum (aged 61) was diagnosed with medium grade DCIS (A non-invasive form of breast cancer). She had breast-conserving surgery (lumpectomy) and radiotherapy.
Although both sisters had a breast cancer diagnosis they didn’t qualify for genetics testing due to their age (over 42). Due to the higher risk my female cousins and I were advised to start having yearly mammograms when we turned 40.
In April 2012 my Aunt was diagnosed with bone metastases (breast cancer: grade 4). She had to have radiotherapy to shrink some tumours on her spine followed by chemotherapy.
In July I found a lump. I wasn’t too worried - I was only 36 and had had a lump which turned out to be a cyst when I was 18. My appointment with the breast clinic in the Bristol Royal Infirmary (I lived in Bristol) was on 20th August 2012 I expected to have an ultrasound and be sent on my way - but the consultant was called to look at the images, then I was sent for a mammogram and then a biopsy. By this stage I was starting to worry. Then the consultant said she would take a further biopsy under my arm. I knew that was where the lymph nodes were located, I knew that there was only one reason she would be interested in them. I started to cry. The consultant said “You’re not crying because this hurts are you?” She was right. She sat me down and told me those awful words. “It’s cancer”. It was grade 2 with 2 lymph nodes infected. I was devastated. I couldn’t eat or sleep. I had already signed up to do a dance display 4 days later so I went through with that (it was a great distraction actually), but other than that I couldn’t listen to music for a couple of months. I remember it as a very quiet time where the rest of the world seemed to whiz round me while I stood still feeling lost in the middle of them. They told me i had to have a mastectomy and chemotherapy and take Tamoxifen for 5 years. Radiotherapy was a possibility. The part I dreaded most was losing my hair. I wasn’t prepared for my emotional response to having a mastectomy. I don’t know how I walked into that theatre. Every part of me wanted to run back down the corridor. I have such respect for women who have a preventative double mastectomy - My boob was tiny and trying to kill me, but I was still terrified. Soon afterwards I moved back to Belfast and in with my parents because I am a single mum to a 7 year old boy so needed support through chemotherapy. I had to sell my house because when my sick pay ran out I wouldn’t be able to afford the mortgage. Cancer didn’t just take my health - it changed every part of my life.
In October 2012 Mum went for her yearly mammogram - but was diagnosed with DCIS again on the same breast. This time it was in three places and was a high grade, so she had a mastectomy.
They say that cancer doesn’t affect just the person diagnosed - it affects the whole family. We took that literally. On 29th October 2012 Mum had her mastectomy, the next day I started chemotherapy, and 7 days later my aunt started her chemotherapy. We qualified for genetics testing.
While waiting for the results I read everything I could on the BRCA gene mutations. Thankfully I found BRCA Link NI. It was fantastic and Hazel so helpful and comforting. I decided which preventative measures I would like to take: I wanted another mastectomy and an oopheroctomy as my family is complete and I NEVER want to go through chemotherapy again……but the test came back negative. I was shocked and not as pleased or relieved as I thought I would be. I’m the kind of person who likes to know facts and figures, but I had none so I felt like I was in some kind of limbo. I was advised that there is a good chance our cancer is genetic and we might have an unknown gene mutation so all three of us have given a blood sample to a trial to find BRCA 3.
Even though I don’t have BRCA 1 or 2 I am thankfully still able to have the preventative mastectomy as I have already had cancer and am considered High Risk. I see my surgeon at the end of the summer to start that ball rolling. My female cousins had to see their doctor for examination but as they are all younger than me a mammogram would be ineffective.
Now in June 2013 my Aunt is still having chemotherapy and is responding well to it, my Mum has returned to work and is doing great, and I have finished active treatment now and have only preventative and reconstructive surgery, and five to ten years of Tamoxifen to go. It’s been a hell of a year but I hope to come out of it stronger than I went in.
I wanted to share my story on this site because Hazel has been fantastic and assured me that this site is still for me as a High Risk person even though I am BRCA negative. I hope this might help someone in a similar position know that they too are welcome here and that they are not alone.
Caroline Griffin June 2013
..............................Sara McCrea's Story
My BRCA journey...
My name is Sara, I am 30 years old, married to Gavin, and we have 2 children, Isaac who is 3 and Rachel who is 15 months old. On 9th July this year I had a risk-reducing double mastectomy and reconstruction. Today I am going to share with you the story of my BRCA journey. The more I have heard from other BRCA carriers, the more I have come to realise that it is such a personal story and no 2 experiences are the same. So this is just MY story...
To give you a bit of my family history, my dad’s side of the family all live in England and Wales. My dad’s twin brother died from pancreatic cancer at the age of 49. His daughter was then diagnosed with breast cancer at 32. Given her young age and her dad’s history of cancer, the oncologist offered genetic testing although said it could take up to 2 years to find a mutation if there was one. They did in fact find the BRCA1 mutation quite quickly and within a few weeks, my cousin Bethan met with my dad and my other uncle and their cousin to advise them that she was a BRCA1 carrier. That was in September 2011. Within the next few months my dad found out he was also a carrier, and thanks to a proactive GP who sent him for prostate investigations, he was also diagnosed with prostate cancer. So far this has been managed with regular screening and no active treatment as yet. After hearing that my dad was a carrier, I decided that I should get tested too and I met with Professor Morrison around April/May 2012. For their own personal reasons, my 2 brothers have decided that, as yet, they do not want to be tested for the gene. My dad’s other brother and 3 of my cousins have the gene, one cousin doesn’t want to be tested. My only other female cousin Anna was tested but does not have the gene.
In the initial stages of my BRCA journey, my cousin Bethan was very much ‘living with’ her cancer. She had various surgeries and treatments but was always positive and remarkably strong for everyone around her. This seemed to feed into my perception of BRCA1, coupled with the fact that my default setting in life tends to be “it’ll be grand” so truthfully I wasn’t overly concerned about whether or not I was a carrier of the gene. In fact, I told Professor Morrison I would be happy with a phonecall to give me my result. He rang me at work in June 2012 with the news that I was carrier and the first person I told was the caretaker who was sitting in the office having a coffee at the time! “You know that ‘gene thing’ I was telling you about, I have it!” In the conversations that followed with my cousin, we agreed that these things can be ‘managed’ with screening and surveillance. Surgery was considered a drastic option. Unfortunately then came the devastating news that Bethan had developed brain mets in September 2012. She was given 4-6 months. It was over these very difficult and sad months that the reality of being a BRCA1 carrier began to set in but it got mixed up with my grief for my beautiful cousin. Bethan passed away on 26th January 2013, age 35, leaving behind her husband and their little son who was 3 and a half. Our family’s hearts were broken.
Losing Bethan made my decision with regards to surgery. I realised that I too could be in her situation. I had a husband and a son; I was young and I was a carrier. I was 29 and already pregnant so while I had made up my mind about the surgery, I had a while to wait before getting it. These were the darkest and most difficult days for me. Although I kept functioning, it was a fragile shell that held me together. At this stage, my mum had phoned Hazel to get some support but I just wasn’t in a place to appreciate the amazing work of BRCA Link NI. At that time, I didn’t want to speak to anyone else about how awful this all seemed; I couldn’t speak about it. Truthfully, the part of me that has been most affected has been my faith. I am generally a very practical person so the need for the surgery outweighed any self-esteem and body-confidence issues, but I struggled to get to grips with how my faith as a Christian fitted into such a dark, painful situation. I lost hope and the feeling of this gene being a death sentence began to set in. It was a difficult time for my family too. My husband got stuck in a mindset of assuming that what had happened to Bethan would happen to me, and I had nothing in me to reassure him. There were other family bereavements (not cancer-related), and everything just seemed hopeless. Gradually and after a while though, I began to realise that the little flame of hope had not extinguished entirely. In what I can only attribute to God, I was able to accept the pain in my heart and that it would never go away, but I needed to see beyond it if I was to have any kind of happiness in life.
And so our little Rachel arrived into the world on 30th July 2013. We gave her the middle name of ‘Hope’ because we had come to realise that we always need to hold on to hope in this life, in spite of what our present circumstances are. I met with Dr Hinds for a second time that summer and told her that I wanted the risk-reducing surgery as soon as I finished feeding Rachel, which I hoped to continue for 6 months. Being honest, giving up breastfeeding was significant for me, it created a definite sadness in me and I grieved, but I focused on the positive fact that I was on my way to getting the surgery and dealing with this gene. I met with Miss Refsum and discussed the surgical options, and I was put on the waiting list. As part of the new screening process that had just been given funding, I had a breast MRI the week after my 30th birthday. This was my second as my parents had paid privately for me to go the previous year as peace of mind for us all. It is such a personal choice but for me, the screening process is reason enough for me to have the surgery. I found the week or so between having the scan and getting the results to be almost unbearable, as I waited to be told whether they had found something or not. I was also invited to attend a Clinical Psychology appointment with Roger McClements at the City Hospital, in advance of getting the surgery. My husband and I decided to go together as this was all very much a joint decision, besides that I felt it was him who most needed to talk through everything. By this stage in my journey, I think my usual “it’ll be grand” mentality had resurfaced and I was really feeling quite determined that I was getting this surgery and that’s that.
I remember walking from the car to the appointment with my husband and saying, “Like honestly, the decision has been made, I’m getting the surgery, what am I going to talk about to some man for an hour? It’s ridiculous you just have to jump through hoops before you get the actual surgery...” We went in to the appointment, and Roger said, “Well Sara, how are you feeling about today’s appointment? Some people feel it’s just another hoop to jump through...” J From that moment on, I can honestly say it was the most validating, positive experience. I probably had thought through and discussed most issues with my husband already, but to have that conversation with someone like Roger just affirmed us both in the decision that we personally had made and renewed our strength to face whatever was to come in the next few months. I would say it was an invaluable part of our decision-making process.
With the surgery within reach, I decided that I needed the support of someone who had already been through it and so I contacted Hazel. Without a doubt, Hazel has a unique gift of making you feel like a friend from the moment she answers the phone. I clearly remember our first conversation. It was a frank discussion of the practicalities of getting the surgery and recovering with 2 little children at home. It started to hit me that this was really going to happen. Hazel put me completely at ease and reassured me that she had had the same worries and concerns that I did but here she was, further along the journey than me and it had all worked out well for her. To be able to share my feelings and know that she just ‘got it’ was brilliant and such a help. Hazel also invited me to the next BRCA Link meeting they were having and so my mum and I went along. Again, it was a really positive experience to know that everyone else was in the same boat and also interesting to hear how other people were dealing with the gene, and making their decisions about screening, surgery, etc. It also helped my mum who needed to support me but isn’t affected by the gene herself. Hazel, the work you do is amazing. BRCA Link NI is such an important resource and your time and effort is so appreciated. Thank you.
My surgery date actually came through quite quickly. I got a phone call at 5pm on Tuesday 1st July on my way out of work asking me to come in the following Wednesday, 9th July. Here it was, what we were waiting for. I rang my husband and then my mum – were we all set to go? Yes, we were. It was about to happen... Over that week I felt a buzz of nervous energy, on one hand anticipation that I was about to get this fear of breast cancer literally cut out of me, but on the other I was going to be away from my children, and also unable to practically do the ‘stuff’ that I do, and that was a horrible feeling. But my sister-in-law, Pamela, just kept repeating to me, “Let’s do this!!” – she reminded me I wasn’t alone. My family were cheering me on from the sidelines. Thankfully the week passed quickly with getting everything ready at home and finishing up things in work. Suddenly it was Wednesday morning and I was ready to “do it”. After getting admitted by the nurse and meeting the anaesthetist, I got into bed as the nurse had told me there could be a couple of hours to wait. I fell asleep! Clearly, to this working mother of 2 young children, the chance of a daytime nap outweighed any nerves related to the surgery! They took me down to theatre, the nurses chatted a bit and before I knew it I was waking up in Recovery. At the BRCA Link meetings, someone had described the feeling immediately after surgery as having your chest pumped full of concrete – for me that was it exactly. Yes it was painful but it was not a searing pain and regular painkillers kept it bearable. My husband and my mum came up to visit me that night (my poor dad had had an unexpected trip to A&E himself that day so couldn’t come) and both told me I looked ‘well’. I felt pretty smug in my drug-induced state, but when my husband visited again the next morning, he said “Phew! You actually do look well. You looked so awful last night, totally grey!” Yeah, thanks for that! I had 2 sets of drains in that needed emptying regularly. One set were taken out after 2 days and I was sent home on the Saturday morning with other set still in. I emptied these myself at home and had them taken out on the Wednesday, a week after my surgery. I can honestly say I found the pain to be bearable. Once the drains were out, I only needed to take very occasional paracetamol if I had been a bit too active and I could feel a twinge on my side.
I work as an occupational therapist and my job is about maximising independence and facilitating people to participate in meaningful activities. I think this training has helped me in my own recovery. Each day, I looked for something that I couldn’t do the day before. Initially I needed help with everything, especially because I felt quite cautious of the drains but there was also something to be found that was a new achievement. I’m talking about opening the car door for myself, doing the Tesco shop online, getting a snack for the kids. In those first few days, I maybe didn’t do much else, but I needed to achieve something so I set myself little goals. My mum, who is here today, will tell you – I am so annoying when it comes to accepting help or acknowledging I can’t do something! So I definitely overdid it the odd time. Like when I got my husband to take me and the kids for a walk round Ikea because I had cabin fever. I had only been at home for 2 days and I still had my drains in! I think we made it to the cafe, had a drink and left again. I slept for most of the rest of the day! Tiredness has definitely been the biggest battle since my surgery. I really did feel exhausted and needed to rest a lot for the first 6 weeks or so. This meant my husband had to do a lot – with help from both sets of our parents. It was a challenging time for us. He obviously did what I wasn’t able to do (with help from our mums) but running a home doesn’t come easy to him. I’ll give you an example... The first time he did the washing he had to Facetime me from the kitchen so I could explain how to turn on the washing machine!! My husband is honestly the funniest person I know but over those first few weeks, it was clear to see how stressed he was, and we just didn’t laugh the way we usually do. I felt responsible for his stress and this made me guilty, frustrated, and angry. I also hated not lifting my kids and hugging them tight – they needed it and I needed it. But like I say, every day contained some small achievement and each one was a step towards being fully recovered.
And so, here we are... 4 and a half months post-op and going strong. I said earlier the practical aspects of the surgery outweighed any body issues but I would be lying if I said I wasn’t conscious that my shape is different and noticeably so to those that know me. But I am pleased with the results in that the scars are neat (and already quite faint) and I am probably in better proportion than I was before. My husband has wisely declined to comment on whether my shape was better before or after (he knows there’s never a ‘right’ answer to such a loaded question!) but truly he is just happy that my risk percentage has been so drastically reduced. My post-operative body is simply my ‘new normal’ and yes, it will probably take me a while to adjust completely to having a different shape but the ‘new normal’ for me also means not being consumed with thoughts of ‘when not if they’ll tell me I have breast cancer’. The peace that comes from that is far greater than any self-conscious feelings I have about my body.
In one of our conversations, Hazel told me I would feel like a new woman once I had recovered from the physical effects of the surgery. I held on to that in my more difficult moments and now I find myself standing here telling you my story. I have done 6 weeks back to work, I am in charge of our house again, and this week I even went running for the first time since my surgery. I have a slight physical weakness for things like opening a stuck lid on a jar but on the whole, I feel good. There is more surgery still to go as I will have my ovaries removed when I’m 35, and I’m sure that will bring another season of change and its own challenges but I am confident that we will endure and survive as we have this time around. Through everything I have experienced both heartbreak and hope. The pain in my heart will never go and losing my cousin will always be an inexplicable tragedy but somewhere, in the midst of that, God has given me a deeply-rooted hope that gives me courage and strength to face whatever lies ahead.
Like most people, pre Angelina Jolie, I can admit that I had little to no knowledge of the BRCA gene mutation. When I was 24 years old my aunt was undergoing treatment for breast cancer and at the time I did not realise how meaningful this would then become in my life. On my return from inter-railing around Europe during the summer I was sat down by both my parents to explain that the reason my dad’s sister had developed breast cancer was not just that she was very unlucky, but because it was discovered that she carried the BRCA1 gene mutation. Following genetic testing my dad was also found to carry the gene along with six out of the eight of his siblings. As my parents were explaining the implications of all of this to me I responded with “I carry it too”. I knew this because I am what you would call “every wheel and turn of my dad”. Every strange little blemish, every obscure ailment and every funny little quirk I inherited straight from my dad. It had always been this way. So despite my parents unwavering optimism I had already began to accept that I too would carry this gene.
In the weeks that followed and the confirmation in writing that this was the case, I went through all the normal range of emotions that one might expect. I felt hard done by, I felt sad, I felt scared and I felt like I suddenly had to plan ahead. Something I had never quite had the maturity to do before. I cried, I was angry, I wished I was one of my brothers, I worried about telling people, my friends and the boyfriend I didn’t have. I would say that I very quickly ran through these emotions and all the different feelings and then I regained my composure and I remembered that I was better than the boys, because I was my mother’s daughter and that made me tougher.
I met with geneticist and both breast and ovarian doctors and I told them all the same thing. I know I’m young, and I know this isn’t something I should be concerned about until possibly ten years down the line, but I’m a fighter and the one thing I knew I had to do was to know my enemy! I didn’t particularly like the idea of going away with this life changing information only to return when I was around thirty years old to have my first proper test or check-up. I thought, if this is something that I’m going to have to do on a yearly basis anyway then I had best start now, otherwise I would be so fearful of my first test results. I wanted this to become a normal part of my life so that it was something I wasn’t afraid of so I arranged with my own GP to have a CA125 blood test done and a breast screening with Dr Hinds annually. I distinctly remember my first meeting with Dr Hinds, so much more pleasant than the geneticist – no offence! But I also remember all of the uncertainty about BRCA as all of the research was so new and ongoing. I remember Dr Hinds referring to a few test books for statistics and charts and so I asked if she could photocopy all of this for me to read in my own time. I’m a studier, I learn things by reading and I deal with facts. I’m not whimsical or even very optimistic; I’m a realist so this was what I needed to do for me.
At 25, almost exactly a year later I met my partner, my future rock and Florence Nightingale. Before, when I was single my friends would have described me as an Ice Princess or joked that there was a brick swinging in my chest instead of a heart but I had an emotional heart to heart with my boyfriend early on in our relationship on the way back from a winter break in Malta and told him about the BRCA gene. He took it very well and to my relief had the exact same mindset as me – so what, you’re not sick and you can do something about it.
It wasn’t a prominent feature or topic of conversation in our relationship and was handled similarly to the way my family did. My three protective brothers, parents and best friends cared about me immensely but of course everyone has their own lives and it’s not something they would think about every day. It became something that was only really brought up when I updated them on my latest appointment. I don’t begrudge anyone for that, I would be the same if it weren’t about me. The difference is, when it is about you, you don’t forget. I don’t mean that it’s something that weighed heavily on my mind or made me down all the time, it was quite the opposite. When I showered, when I put my bra on or moisturised I was slowly preparing myself for what I believed was the inevitable. I knew from the start that I was going to have preventative surgery to remove what I regarded as “ticking time bombs”. They were only boobs anyway. I wasn’t particularly gifted in that area to begin with, they weren’t my prized possessions and the thought of breastfeeding one day would make me turn grey and weak at the knees!
I talked this all over with my partner on a number of occasions and it was never a case of “if” I have the surgery it was when. My next appointment with Dr Hinds was in May 2015 and it was then that I talked seriously about the process, how it worked and what it entailed. On leaving that appointment Dr Hinds said to me “I expect I’ll hear from you sooner rather than at our next appointment” but I’m sure even she was surprised to get an email from me about a week later. I had decided that due to my age and the fact that I did still care about my appearance and how I would look post-surgery that Mr Khan the plastic surgeon would be the best option for me. On meeting with him I was very happy with my choice as he seemed very confident and a professional at his craft. I hope he won’t mind me saying this but he came across as a bit of a diva, which I loved! I react well to that type of confidence and it made me feel in very safe hands. He actually told me “most people look the same or better after my breast surgery”, good enough for me!
The most important part of my journey has to be the preparation, both mental and physical. I have always been an active person and religiously trained 3-4 times a week doing a variety of things. But having confirmed my surgery in July I wanted to get my body in the best shape of my life to give me the best chance of a quick recovery. I cannot emphasise enough how important this was to me to prepare for surgery. I decided to set myself a challenge and complete Hell and Back in Co. Wicklow in September. It was perfect timing as I had a surgery date for October. The only person stupid enough to agree to do it with me was my eldest brother. For anyone that hasn’t heard of this it is the most gruelling and crazy course I had come across. It involves a 10km cross country run with 12 huge obstacles dotted throughout. This included wading through a swamp, climbing a mountain with logs on your back, army crawling under barbed wire, two electric shock fences and sniper alley which consisted of trained professionals using you for target practice with their paint guns.
I upped my training to about 5-6 times a week and threw in the odd 4mile run for good measure. You might think this sounds mad and yes it is a bit extreme but it was my coping mechanism and something that helped me focus, whilst ultimately preparing my body for a bigger challenge to overcome. I decided I wasn’t just doing this for the good of my health and used it as an opportunity to speak out through social media to tell everyone that knew me about BRCA and raise money for BRCA Research at Queens. The response was absolutely amazing and all of the influx of messages and donations were just fantastic. This was the part that really helped with my mental preparation too. Every single message I received and words of kindness and support just made me feel so strong…or stronger. I completed the challenge and felt like an absolute champion as I had helped to raise over £2,500. How could I not have completed it with the weight of that money on my shoulders!?
The week before my surgery was probably the most difficult emotionally. It was more of an anxiety feeling as I’d never spent any time in hospital let alone for major surgery. It was a fear of the unknown and the aftermath. How would I feel and who would or wouldn’t be there for me. That was important to me.
The night before my surgery I was reasonably calm, if not slightly hungover from my friend’s wedding the day before, so bed was something I was looking forward to. I had a call from my dad just before bed and that stirred my emotions a little more, the reality of it all, but after a few reassuring words from my partner I was out like a light…I’ve never had a problem sleeping. Going into hospital for 7am was a surreal experience with my hospital bag suitably prepared for all outcomes – multiple button up nightshirts, fluffy socks, un-fragranced shower gel and my saviour earplugs. My mum works in pre theatre at the City Hospital so she met me and my partner at the entrance so I definitely felt at ease. Whilst the nurse was prepping me my partner went to get a coffee and when he came back he looked at me perched on the bed with my legs crossed and hands behind my head and broke into a fit of laughter. I’m sure it was nerves but the both of us could do nothing but giggle at the nonchalance of my position. We even laughed as the nurse and porter wheeled me of at such a speed he had to run to keep up. But I was ready.
I was in theatre for what felt like 10 minutes before I was awakened by the nurses in recovery. And that was it. Done. I was soon brought to 5 South in the city where I got the best toast I have ever eaten in my life!
I had four drains in, oxygen tubes in my nose and a drip attached to my right hand when my family and boyfriend came to visit that evening. I’m sure it was a little unpleasant for them to see me like that but at the same time, I was smiling and I was happy so they were happy. I spent three nights in hospital altogether which was much shorter than the full week that I had anticipated. I had been shuffling to the toilet myself from the first day looking like what I can only describe as a Belfast granny doing her shopping – bent over in my pyjamas and carrying two plastic bags containing my drains. But that’s the point, I was mobile, doing things for myself and basically getting on with it from the outset. This was what I had prepared and trained for in my eyes. I can only attribute my speedy recovery to that preparation. All four drains were out and I was at a McDonalds drive through by Friday afternoon.
I’m not saying that I wasn’t in pain or playing down the discomfort at all but what I would say is it was manageable and when it wasn’t, that’s what painkillers were for! A week after surgery I was out daily doing fifteen minute walks with the dog’s lead tied around my waist so as not to pull my arms. By week two I was walking three miles a day and had completely stopped taking any painkillers. My boyfriend no longer had to shower me in a big red festival poncho and although he became very good at it, he no longer had to blow dry my hair. I’m not kidding when I say every day gets easier, because it did. When visitors came to see me I would be so busy talking rubbish that they would forget what I had been through, although when they left I needed a few hours kip!
Today I’m standing here exactly five weeks after that drive through double cheeseburger and I’ve been back to work on a phased return since last Friday. I’m not sick, I never was and I feel strong enough and positive enough to just get back to normal because the hard part is over and not once have I looked back. The results are great, my boobs are perkier and scarring is neat and minimal and according to Mr Khan “the surgery went ridiculously well” but best of all my biopsy results came back clear – no malignancies and that’s what it was all about. So now I’m living proof that knowledge really is power, if I didn’t know about BRCA I could have found out in a very unfortunate way one day.
I read endless amounts of positive quotes and cheesy feel good lines but there is one I would like to finish on “The same boiling water that softens the egg hardens the potato. It’s about what you’re made of, not the circumstances”.
Rachael Forde 13th November 2015