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.
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.
Rachel McKeon is one of the Co-Founders of the charity OvaCare which provides support and advocacy for women diagnosed with ovarian cancer. She is a mother, a wife, a niece and a friend who is currently living with an inherited gene mutation that could possibly increase her risk of developing cancer during her lifetime.
Rachel has what is called a BRCA gene mutation which affects the body’s ability to supress tumour growth and increase the likelihood of cancers such as breast, prostate, and ovarian cancer. At 49, Rachel’s mother was diagnosed with ovarian cancer and years earlier, her aunt was diagnosed with breast cancer, giving Rachel a strong family history of cancer.
“I always said I wouldn’t get genetically tested unless I was prepared to take action as a result” Rachel explains. “I knew personally that I would struggle to live with the knowledge if I found out I had the BRCA mutation, plus at the time I was in my 20’s, I hadn’t had children yet and as far as I knew it was only my mum that had been diagnosed with ovarian cancer. My aunt had previously had breast cancer in her 40s but had survived that and passed away 35 years later from a different cancer, so I didn’t see the link.”
But things changed for Rachel three years ago. Rachel’s cousin was diagnosed with breast cancer which made the reality of a cancer diagnosis for someone in her generation all the more real. In 2018, Rachel experienced a pain in her left breast and as a result she had a mammogram. When her consultant asked her about her family history, he informed her that based on her history there was a 50% chance she could have the BRCA gene, she was floored.
“This was a complete shock to me as I didn’t realise the percentage was that high. I spoke to my family who were all part of the genetic screening programme in the UK and now had further information which was that my aunt had the foresight to leave behind a blood sample which they tested and found the BRCA1 mutation. My cousin Helen also tested positive for the BRCA1 mutation.”
This new information was too much for Rachel to ignore. The BRCA1 gene was in her family and there was a 50/50 chance she had the gene that had most likely caused her mother’s, aunt’s and cousin’s cancer diagnoses.
Rachel was also in her 40s, the age at which it seemed the other women in her family developed cancer. With all of these factors and the breast twinge that Rachel believes was a sign from her mother and aunt, she was tested and confirmed to have a BRCA1 gene mutation.
“I now felt like a ticking bomb and was dreading the MRI as I went back and forth working out surgery options – so it confirmed to me that I was right, and I wouldn’t have been able to live easily knowing I had the BRCA mutation without taking action”
In September 2018, Rachel had an oophorectomy and from a physical point of view, recovered fairly quickly. Thankful, Rachel had never been diagnosed with cancer and so didn’t have to face into the daunting process of receiving treatment before or after surgery. However, she did have to come to terms with the fact that she would now not be able to have any more children. She also had to deal with the impact of being plunged into a medically induced menopause overnight.
“Everyone is different, but I found the fog and anxiety that descends, utterly debilitating for the following months. Crying without knowing why or even realising I was crying. It was awful. But luckily I knew how to surround myself with the right support team of medical and holistic support, and my God did I need it, just to be able to function each day.”
Next was the mastectomy and reconstruction which was scheduled for March of 2019.
“There are so many types of surgery options, at first I found it overwhelming. Thankfully I had fantastic consultants and my experience was that we really have amazing skilled surgeons in Ireland that can carry out these specialised surgeries.”
Faced with an incredibly difficult path, Rachel has not only come through her own preventative surgeries, but has been able to share her support and experience with others on a similar path through the Marie Keating Foundation’s Online BRCA Support Meetings and annual BRCA Conference.
Rachel has been incredibly fortunate that she has her amazing family, husband Dave and daughter Maya to give her the strength to face a life lived with BRCA.
Krista and her family are no strangers to cancer. Having lost her grandmother and great aunt to ovarian and breast cancer when she was young, Krista had always had a suspicion that the BRCA gene may be in their family. And she was right. Here is her story-
“I tested positive for the BRCA gene in February 2021, and it really wasn’t a surprise to me. We’ve always had a strong family history of cancer amongst the women in my family and it was always something I brought up to my GP or doctors when they asked about our family history. When my Mam was diagnosed, I just sort of knew something wasn’t right so I went and got myself tested. And here we are.”
Krista’s mother’s form of ovarian cancer was extremely aggressive and she went from remission to stage 4B within a matter of months, and sadly passed away in October of 2020. Krista received her BRCA test results shortly after, discovering she was BRCA1 positive.
“I got my results on the 9th February and on the 5th March I was in having my full hysterectomy. It probably seems fast to some people, and looking at it now, it did all happen very quickly, but I had been researching the preventative surgeries and knew what I wanted well before I was diagnosed. I’m the kind of person that I make up my mind and that’s it. I do what I set my mind to and I don’t look back.”
As a result, Krista was thrown in to full menopause at 41, and is now a huge advocate for HRT and sharing information about HRT with other women in the BRCA community and beyond.
Already perimenopausal before she tested positive, Krista noticed the change in herself immediately after surgery. From mood swings, sweats, exhaustion and much more, Krista describes the three weeks before she started HRT as “week three of me just completely feeling like I was going crazy”.
Pre surgery, HRT usage had never been mentioned to Krista. Three weeks after her surgery, she started her course of HRT within days felt like she was back to herself again. While understanding that HRT is not suitable for everyone, Krista feels passionately about all women with BRCA being made aware of what HRT is, and how it can help to easy the transition in to surgically induced menopause.
“Because of some of the things that happen to Mam during her treatment, I’m very used to sticking up for myself and advocating for myself, but I know that some women aren’t. To keep information about HRT under wraps and for some women to not be offered the medication that saved my sanity, it just blows my mind.”
Krista has recently undergone her full mastectomy and has made the decision not to go for reconstructive surgery and to remain flat. This is a choice she is very proud of and is something she feels is the right decision for her.
“Boobs don’t define me or my personality. Remaining flat from me is a choice I’m very proud of, and am extremely happy with, and I think people need to know that decision is mine, and that their judgement isn’t welcome. When I started telling people I was going to stay flat, I got a lot of comments like ‘Would you not go for reconstruction, you’re so young?’ or ‘what will your husband thinks’ and to be perfectly honest, I felt very judged. But I realise now that this decision is mine to make. I just want to get my surgeries over with, so I can focus on living my life again.” Krista explains.
Krista found the Marie Keating Foundation’s Online BRCA Support Group while she was looking for some support and has never looked back. Krista is now a valued member of our Marie Keating Foundation family and helps others on a BRCA journey to understand they are not alone.
“BRCA is not a one size fits all experience, and if you’re like me and have kids, it feels like the journey is never ending, but you can find solace in it, and there are people out there that can help you make the hard choices. The Marie Keating Foundation group and their Whatsapp group is great because you can just share how you’re feeling and vent without having to feel like you need to protect everyone. It’s difficult to talk to family about because depending on whether they’ve been tested or not, they might not understand. These ladies are there for you whenever you need them, and understand the highs and lows of the experience. I personally am delighted I found the group.”
“With a BRCA gene mutation, you almost feel like you don’t fit in anywhere, and that you’re taking resources away from people that have a cancer diagnosis. But when I found the Marie Keating Foundation, and heard Aisling speak at their conference, I felt like I had finally found somewhere I fit in.”
Cancer had always been in the background of Jean’s life. Over the years, Jean’s mother had been diagnosed with breast cancer on three different occasions and it was always something that played in the background of her childhood and into her adulthood.
After her third diagnosis, Jean’s Mam changed consultants, and her new team suggested that due to her history, she go for genetic testing. The results came back and Jean’s Mam was identified as a BRCA2 gene carried.
“That was devastating” Jean explains. “When Mam came back as positive that really upset me. So much so that when I went for testing and my results came back positive, I almost felt numb.”
As an only child, Jean and her mother were the only people she knew that had a BRCA gene mutation. On the advice of their genetic counsellor, Jean was then admitted for regular screening to ensure she stayed healthy.
“I was actually okay for a few years. I went for my breast checks, MRIs and ultrasounds and was able to live my life as normal. It was only really when the MRIs moved to every six months and the call-back appointments for follow-ups became more frequent that it really started to encroach on my regular life and I started to think seriously about risk reducing surgery.”
In the autumn of 2020, Jean’s world was once again rocked when her Mam was diagnosed with cancer of the peritoneum.
This was the toughest diagnosis for Jean and her family.
“She had been well for over eleven years, and we really thought that part of our lives was behind us, but it wasn’t and that I think is what scared me the most. I moved home to spend time with my Mam and Dad and I think it was around then that I really decided to go ahead with the mastectomy. I just knew that I didn’t want the life of cancer treatment and illness my Mam had gone through, and in November 2021 I went ahead with the surgery.”
At 34, Jean made the decision to have a double mastectomy with immediate reconstruction. This was the same age as my Mam when she had her first breast cancer diagnosis. While it wasn’t easy, she came through the surgery well and is happy with her decision today.
“The surgery is drastic, its body and life changing, but it was a way for me to alleviate the dark cloud of worry that can sometimes hang over you when you’re a BRCA carrier, so I found it really worthwhile for me.”
Jean first became aware of the Marie Keating Foundation through our annual BRCA Conference. While she had received tremendous amounts of support from her family and friends, Jean attended our Conference as a way to find reliable information about BRCA as well as engage with a community who understood her experience.
“When I heard Aisling speak at that first conference, I finally felt like I fit in. We were close in age, and I related so much to her experience, and where she was coming from. I also found a huge amount of information surrounding surgery options and screening, family planning and fertility and much more that I hadn’t been able to find anywhere else. Everything came from the Marie Keating Foundation. It’s with them that I found their online support group, and later their Whatsapp group, and now, I’m in the position where I can pass on the support I’ve received as one of their new Peer to Peer supporters.”
When asked what advice she would give to others that test positive for a BRCA gene mutation, Jean says;
“BRCA is something you live with. It has its ups and its downs, but at the end of the day, it’s just something playing in the background. I’ve never looked on it as a death sentence. With the right support, and information, you can live an extremely full life, you just need to make sure you take the time to sit, and figure out what the right path is for you.”
“In January 2020 I was diagnosed with Breast Cancer and had A Lumpectomy in February 2020 & had to start Chemotherapy on the 4th April 2020 right at the beginning of Covid, it was very hard as I had to go to all my treatments on my own. After Chemo, I started Radiotherapy in August 2020 for nearly 5 weeks. I found this treatment emotionally difficult as again I was on my own and was with other people who had others types of cancers which I wasn’t expecting to see especially Children, it was heart breaking.”
After I finished my treatment I was back with my Oncologist who told me my last CT was Crystal clear – words I will never forget. But to tick all the boxes and give me the best chance of living life to the full she wanted me to go for genetic testing for BRCA because of family history on my Mams side. That appointment was Nov 2020 a Day I will never ever forget, I met with David Gallagher and Eoin Hanney and it was explained to me what the test meant and what it would mean if I was BRCA positive which they said I was highly likely to be because of my cousin and my Uncle. The results were going to take a number of weeks so with Christmas approaching we said as a family we would have the best one even though Covid was around.
Unfortunately Covid did hit our family on 27th December and 1 by 1 9 out of 12 in our bubble became positive. My poor Dad got it the worst and Very Sadly he passed away on the 6th January 2021 after 5 days being sick and 36 Hrs in Tallaght Hospital. Our world crumbled into a million tiny pieces – The Rock of our Family was gone…..
The following week I got the results from my BRCA testing to confirm I was positive for the BRCA2 Gene Mutation. Another roller-coaster to face and a road of big decisions for me and my family. The right thing for me was to have both preventative surgeries as soon as I could to reduce my risk of cancer coming back.
My connection with the Marie Keating Foundation started in Nov 20 when I was recommended by a friend to register for the Survive & Thrive which thankfully after a lengthy conversation with Helen Forristal I was accepted for their next programme starting in January. It couldn’t have come at a better time for me with the passing of my Dad. I was in a very bad place and Helen kindly persuaded me to join just for the first week and if I felt uncomfortable or wasn’t able for it she’d sign me up for the next one instead. My god my eyes opened to a huge support network from girls just like me all needing the strength & encouragement from each other. It was the start of the making of me and giving me strength & positivity to get back to living a somewhat normal life again for me and my family.
After that I was introduced to Bernie Carter who runs the BRCA Support Programme which I joined and have so much support from this group with a BRCA diagnosis. I told my story on their virtual BRCA Conference in 2021. I am now trained as a Peer2Peer Supporter to help woman & men in the future who have little or no support.
As a little thank you to the MKF for their help and support I also told my story on their Concert 4 Cancer in 2021. I think it is so important to make people aware that Cancer is not a totally frightening and that there is so much support within the Marie Keating Foundation.
I felt quite alone after I received my genetic test results & it was so beneficial to find out about the Marie Keating Foundation & the support they provide to anyone impacted by a BRCA gene mutation.
I was aware that there was a history of breast cancer on my Dad’s side of the family going back at least three generations. My aunt had breast cancer & was later found to have the BRCA1 gene mutation. Testing showed that my Dad also had the mutation. I received my genetic test results in October 2019, confirming that I also have the BRCA1 gene mutation.
As I had already finished having my family, I decided to go ahead with the bilateral salpingo-oophorectomy first. This was done in March 2020 & I went on to HRT after the surgery.
I found it more difficult to make the decision regarding the double mastectomy & reconstruction, so initially I had surveillance via mammograms & MRIs. Listening to others share their experiences at the online support meetings was a great help & having explored the reconstruction options available, I went ahead with breast surgery in December 2021. Pre-cancerous changes were found in both breasts so it was a relief to have the surgery completed. I’m grateful to have been in a position to take preventative measures to reduce my cancer risk. I’m also thankful to the Marie Keating Foundation for the support they have provided & the amazing people I have met. Becoming a Peer to Peer support volunteer will hopefully enable me to give something back & help others in a similar position.
Growing up as a child and young adult I was very aware of the word Cancer, but as a family we did not speak about it, as my Mum died from Breast Cancer at 35yrs and my father from Prostate Cancer at 64yrs. Both of my parent’s cancers are associated with BRCA which made it difficult to ascertain which side of the family I inherited the BRCA1 gene mutation.
I discovered I had BRCA1 while I was receiving treatment for my second breast cancer. I found the unenviable task of telling two large families extremely difficult. In particular, having to convey information with possible ‘life changing’ implications was stressful, as naturally I was met with doubt and reluctance. A ‘Walk in my Shoes’ scenario. The exceptionally long waiting times for the genetic testing did not help matters and was difficult for the family.
When I received my diagnosis in 2014 there were no BRCA support groups available, so I reached out to some wonderful ladies who had just gone through the preventative breast surgeries. I will always be incredibly grateful to them for sharing their experience with me. At the time, I was overwhelmed with all the different surgeries available and what was the right one for me. I felt I was in panic mode, like a ticking time bomb, particularly having had two breast cancers and a close call with Ovarian cancer. I knew this decision was particularly important as it would affect me for the rest of my life. I found a few helpful ‘Breast Reconstruction’ books online, as the information from the hospital was limited, but meeting face to face with other BRCA patients was invaluable, particularly hearing information you cannot always find in the books.
After my Cancer treatments, breast surgeries and then the preventative surgeries; Oophorectomy and Double Mastectomy with DIEP reconstruction, I was struggling with a number of side effects. At this time, the lack of medical supports available to me caused a lot of frustration, as I was forever searching for answers and solutions. When I attended a ‘Cancer Research lab tour and survivorship workshop’ in the UCD Conway Institute I found it very interesting and enlightening. I was then invited to become a member of the ‘Patient Voice in Cancer Research Steering Committee’ and through the PVCR I heard about the BRCA Link (NI) conference in Belfast. This was the first time I heard a wide range of important medical information in relation to BRCA from a team of consultants presenting together. It was also great to meet other BRCA families and to realise you were not on your own. Within a short time, the very progressive Marie Keating Foundation set up a BRCA Support Service in Ireland. I first joined the MKF online support group during COVID and their wonderful BRCA WhatsApp support group. When they invited me to become a peer-to-peer support person I was delighted, as I truly feel no person should have to go through this journey on their own.
As a cancer patient for many years, I am very mindful that every person’s experience is quite different and very personal. It can be extremely difficult reaching out and asking for support, particularly when you are feeling unwell, upset, and your entire world has turned upside down. I also hear a lot of patients saying that after their treatments and surgeries they feel a huge void and sometimes feel lost. I believe by sharing our experience and information we can support each other, give reassurance and help to navigate this journey together.