Our peer to peer support panel is made up of women that are BRCA positive and have learned to cope with their diagnosis, and as a result, have made the decision to aid other women in their BRCA journey. Read their stories below.
I tested positive for the BRCA2 mutation in 2015 at age 29, just 2 weeks after my wedding day. It took almost 18 months, a career change,3 house moves and a baby to come along before I was ready to share my story with my wider circle of family and friends. I was struggling with many aspects of my BRCA journey but not speaking to anyone. After a blog post I had written about that troubled time in my life was shared widely, I was asked to speak at the inaugural Marie Keating Foundation seminar for BRCA families in Ireland in 2017. The sense of community in the room that day and the overwhelming outcry for more support for BRCA families is what has spurred me on to train as a peer supporter. Originally from Dublin, I now live in beautiful West Cork with my family, two kittens, lab puppy and Dave the pygmy goat. I’ve recently set up my own business and life is a bit mad, but I wouldn’t have it any other way.
Seven years ago, I was a trained nurse, had three beautiful children and was married to my childhood sweetheart. I was also diagnosed with breast cancer at 37. Being a busy mother to three very active children left me feeling tired, but I assumed that was normal. After finding a lump in my breast, I asked a colleague of mine to have a look at it. Looking back it was quite comical the two of us in the small tea room, Bernie with her latex gloves on examining this lump and the two of us reassuring ourselves that it had to be a swollen gland due to an underlying infection. When the lump didnt go away, my GP suggested it was an ingrown hair. I knew it wasn’t. I advised my GP that it had come to light that there was a BRCA1 mutation in my family and that my father may be a carrier of the BRCA1 mutation. My GP reassured me that the BRCA gene mutation could not be carried through a paternal line, which I now know is NOT true.
After much debate, my GP agreed to send me to the breast check clinic in St James as a non-urgent referral. This was February I had just turned 37yrs old. (Happy Birthday to me) I received an appointment for April. Something must have told me that I couldn’t wait that long. Another friend and colleague of mine who was recovering from breast cancer and really was a wealth of knowledge on the subject and a fantastic support to me at the time suggested I try another Breast clinic. So I did and I contacted Beaumont Breast Clinic and was seen within 2 weeks.
The team there were fantastic. But I knew during the biopsy when the nurse asked me to point to the lump and I did and she then asked me to point to the other two, that I had not felt, that I was probably in trouble. Following a series of tests including an MRI and Bone Scan, it was confirmed that I had Grade 3 Multifocal Invasive ductal carcinoma of my left breast. Basically I had breast cancer.
My treatment consisted of a mastectomy and auxiliary clearance, followed by six months of chemotherapy which, I didn’t tolerate to well, this was every three weeks and then there were six weeks of radiotherapy, finishing on Christmas Eve 2011. I had a mastectomy with no reconstruction. I decided to wait until my treatment was over to have reconstruction, on the advice of the doctors. I went back the following year for opposite profilactive mastectomy and bilateral reconstruction (July 2012) and finally an Oophorectomy, (removal of ovaries) and fallopian tubes in 2013. The reason for this is because the BRCA1 mutation not only increases the chance of breast cancer but ovarian cancer too. I look back now and realise how lucky I was to have supportive proactive family and friends around me.
My father, whos lineage the BRCA mutation originated, always appeared calm and was constantly available for lifts to hospital, sometimes in the middle of the night, and at that time I felt like a child again because I was safe in his hands. I feel that my cancer diagnosis and BRCA1 diagnosis threw all my carefully constructed plans into complete disarray. But my father who loves the Beatles would try to inspire me with positive quotes, my favourite one was “Life is what happens when you are busy making other plans” John Lennon This resonated with me then because I really didn’t see it coming!
I don’t think it would give justice to this story saying that everything is great because I know there are men and woman who have a BRCA and or cancer story to tell and we all know that there are good days and bad days. Even now, eight years on, if I get a twinge in my back or a headache I immediately think.. It’s back! I have worked very hard to remain positive and not allow the fear to consume me I really appreciate how lucky I am to be here to tell my story. And through my story I am fortunate to have become involved with the Marie Keating Foundation as a volunteer support worker for BRCA gene mutation. I have met amazing women who are also on a journey due to the BRCA mutation. We aim to offer support for other women and men who are affected by BRCA mutation. I hope that my experience with cancer and living with a BRCA mutation might be of help or maybe even comfort to someone reading this story.
Breast cancer has been in my father’s family for generations. When my sister received her diagnosis at 37 years of age, it was the first time breast cancer had bridged the gap to reach to our generation.
I found out I had to be screened for a cancer-causing BRCA1 mutation after both my father and sister were found to carry a genetic mutation. I owe my family an enormous debt of gratitude. They understood the importance of the diagnosis and didn’t hesitate to take actions that allowed myself and my siblings to prevent a probable cancer diagnosis. I became the first BRCA1 positive woman in our extended family to not have breast cancer by the age of 40. I chose to have a preventative mastectomy first followed by an oophorectomy in my mid-thirties.
At the time of my mastectomy, I had three children under five. What was most important to me was having a future without fear of breast or ovarian cancer. Being here to see my children grow. To grow old with my husband. To continue to be a daughter, sister, aunt, friend and colleague.
Having your breasts removed and losing your fertility overnight is something that is not easy to come to terms with. I wanted to take part in the Marie Keating Foundation peer-to-peer support group because I feel that reducing the risk of breast and ovarian cancer due to a BRCA mutation is really important, but at the same time is not without its difficulties emotionally and physically. I have been so fortunate to have the knowledge and support of family and friends behind me at every turn. I hope to be able to empower and support both men and women in taking steps to protect their own health, and that of their families.
My experience with a BRCA mutation begins, unknowingly, in 2005, when I was 8 years old. My mother was diagnosed, at 42, with breast cancer for the first time. She went into remission but was diagnosed with breast cancer again at the age of 47. The same pattern occurred again early in 2016 when she was diagnosed for the last time, with metastasised breast cancer at the age of 53. She passed away on August 31st.
I have a vague memory of my mother mentioning that she carried a genetic mutation that had something to do with her predisposition to cancer. It never fully registered, given the emotionality around her terminal illness, that it might ever be something I had to think about. However, my father encouraged me to consider genetic testing. When I looked into it, I didn’t have to think twice and went for the blood test in 2017 in St. James’ Hospital. A few months later I found out that I carried a BRCA 1 mutation, the same as my mother.
In some regard, I am very early on into my BRCA mutation ‘journey’. I am currently in the second year of my PhD in the School of Psychology in NUI Galway, researching the psychological aspects of being diagnosed as a BRCA 1/2 mutation carrier in Ireland. I am well aware that down the line, I will have to undergo prophylactic surgeries and the physical and emotional difficulties around these. However, for now, I am grateful for my position of
being informed, from my mother, my research and from the support I have received from the Marie Keating Foundation. This in itself was my motive for becoming a peer support volunteer. Given my slightly odd dynamic in my family with regard to BRCA – I am the only known carrier – at times it can be hard to find someone to relate (or vent) to, and as such I am indebted to the six amazing women on the Marie Keating Peer to Peer support team.
Within the context of the Marie Keating Foundation, at their events I have spoken to parents, concerned about telling their own children about their chances of being a mutation carrier. There is often a debate about when is the best time for someone to get tested for a BRCA 1/2 mutation – I myself, at no point have regretted my decision to go for the test. I feel in a place of great privilege, whereby I have firstly my mother to thank, for getting the wheel rolling on finding out about the hereditary risk in our family. She was honest, told me the truth, and asserted no pressure over me to get tested, allowing me the space to process the information. Later on, my father supported me greatly in my choice to get the test, accompanying me to the appointments and letting me rant and rave as needed throughout. I don’t think any parent could do anything more than to allow their children the opportunity and support in making their own, well-informed decisions regarding their options.
My story with BRCA began 14 years ago, and it won’t end any time soon, but I take pride in my research and knowing that I am available through the Marie Keating to young women going through a BRCA 1/2 mutation diagnosis, or to any parent/family members that are worried about how a BRCA mutation may affect their younger relatives.
I feel privileged to have trained as a peer support volunteer with the Marie Keating Foundation. I have had a longing desire to help other people on their BRCA journey from pre test through to post surgery and share my experiences in helping people at a very difficult time.
I have a strong family history of breast cancer and I tested positive for BRCA1 in October 2014. The result was almost a relief. A relief from the wait between test and result. Not having cancer but having this diagnosis threw me into a no mans land category. I attended a breast clinic and was made to feel I was wasting time and what was I doing there. I found this lack of a defined model of care to refer to very difficult to get my head around and there was a lack of knowledge as to “what to do with me”. I became guilty at being in a waiting room amongst women with cancer when I had no symptoms. I was trapped in a medicalised world but I wasn’t sick.
The language spoken was cancer, but I had no cancer however if I didn’t do something about this, I was very soon going to develop it.
Following a change of GP, I happened upon a team who heard me, valued my proactive decision to reduce my risk of cancer. A series of referrals led me to all the right consultants who recognised my decisions and were knowledgeable and passionate about BRCA.
I had a total hysterectomy in Feb 2015, followed by a double mastectomy in 2017. I chose not to have reconstruction, and this was a very personal choice and I have no regrets choosing to remain flat.
I was lucky in a way as my surgeries could be planned, I had time to research all the possible pros and cons and Dr Google threw up plenty of worst case scenarios! I had huge support network from family, friends and colleagues. I was open about my journey and people said I was brave, something I strongly refuted. Brave would be knowing you had the gene and doing nothing about it. All I did was react and make a series of positive decisions.
The surgeries are huge , they are a big deal on so many levels. My surgeons were excellent in preparing and explaining every step of the way clinically and surgically. The missing link in the pre and post surgery days and what I hope we as a group of women can mobilise more resources for is the gap re emotional and psychological supports.
I knew how long on average my surgeries were going to take, what the aftercare would be, what pain relief I would have etc, but the emotional impact was under explored. What and how would I tell my teenager, how going into a surgical menopause was going to affect me and a myriad of other what if’s and other emotions?
This is an area that I believe as a peer support volunteer I can offer some support to other men and women. I can be the ear to listen to those niggly worries and questions at the back of your mind that maybe you think are too stupid to ask a busy consultant, I can offer reassurance and practical advice based on my own experience and the route I took and in time I hope we will have a suite of resources to offer people and point them in the right direction for further information and psychological supports.