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 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.
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. Here is her story-
“I tested positive for the BRCA gene in February 2021.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 with ovarian cancer in 2019 she pushed to be tested for BRCA “
Krista’s mother’s form of ovarian cancer was extremely aggressive , and sadly passed away in October of 2020. Krista received her BRCA test results shortly after, discovering she was BRCA1 positive.
“I got my BRCA results on the 9th February and on the 5th March I had 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 preventative surgeries and knew what I wanted well before I was diagnosed..”
As a result, Krista was thrown into full menopause at 41, and is now an advocate for HRT and sharing information about HRT with other women in the BRCA community and beyond.
Krista underwent her double mastectomy a few months after and made the decision not to go for reconstructive surgery having aesthetic flat closure instead.
“ I have an autoimmune disease so implants are not a great option for me , I didn’t want to have multiple surgeries and having no reconstruction is an easier surgery with a shorter recovery time. So it was the best option for me. I have no regrets about choosing this .”
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. The Marie Keating Foundation has a Whatsapp group which is a great resource because you can just share how you’re feeling and vent without having to feel like you need to protect everyone. It’s sometimes difficult to talk to family as they may have different opinions to you or are embarking on their own BRCA journey. These ladies are there for you whenever you need them, and understand the highs and lows of the experience. With great tips and advice to share.”
Krista went on to become a co-founder of BRCA Ireland, a group that advocates for policy changes and improvements of services for individuals and families with BRCA gene alterations, collaborating with patient organisations, researchers, and healthcare professionals.
Krista is passionate about patient and public involvement (PPI) in research, she has been involved in a number of research projects related to BRCA as a PPI contributor.
“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.
“I think if I hadn’t have had cancer, and got the news that I had this gene, I’m not sure how I would have reacted. It sounds strange, but my BRCA mutation almost gave me a reason for why I was diagnosed with breast cancer so young, and that was a relief. That I could put a reason to it.”
Diagnosed with triple negative breast cancer at just 37, Sarah’s journey with BRCA started just before the COVID-19 pandemic hit, in 2019. She shares her story and trained as Peer to Peer to make people more aware of what BRCA is, and the implications that come with a positive BRCA test and help support them in navigating this new awareness.
“I had heard about the BRCA gene because of Michelle Heaton and Angelina Jolie, but it wasn’t ever something I thought about. When I was originally diagnosed with breast cancer in May 2019, because I was so young, my oncologist suggested I go on for genetic testing. I didn’t think too much about it at the time, as I was more focused on treating my cancer, but I went in anyway and I ended up getting my appointment in July from James’.”
In September 2019, Sarah received the news that she did in fact have a BRCA 2 Gene mutation and there would be decisions she would have to make to help reduce her risk of developing cancer in the future.
“I was lucky in a way that I got my results before I had surgery for my cancer. I was a candidate for a lumpectomy, but because I was BRCA2, we decided to go with a double mastectomy to avoid kicking the problem down the road. When I found out I had the BRCA gene, I was like a dog with a bone. I told the genetic counsellor in St. James’ I wanted all the surgeries done. It was more so for peace of mind, I just wanted them to take what they had to take so I could get on with things, and have that burden and anxiety off my back.”
Because Sarah had been diagnosed with cancer, she needed to remain flat after her mastectomy to accommodate additional radiotherapy needed to combat her cancer. Her original gynae surgery was scheduled for April 2020, but due to the COVID-19 pandemic, this was pushed back to July 2020. Sarah then had her breast reconstruction surgery in July 2021, marking the end of her risk reducing surgery journey.
As Sarah already had two children, she says the decision to go ahead with having her ovaries removed was an easier decision for her. However, having a family during and after a BRCA gene diagnosis is not without it’s challenges.
“I have two kids, so at the moment I’m trying to weight up the decisions of whether to tell them early, or to wait until they’re 18. I’m torn because when I was in having chemo, there were girls in their 20’s having treatment for breast cancer, and because I was diagnosed young, I want to give them the information they need, without making them feel like they are ticking time bombs. It’s difficult.”
Sarah suspects that the BRCA gene came through her father’s line as Sarah’s mother went for private genetic testing and tested negative. Sarah’s father had a melanoma removed a number of years ago (those with a BRCA2 mutation can experience a heightened risk of melanoma). However, other than melanoma, no one else in Sarah’s family has been diagnosed with cancer to date.
Sarah is the kind of person that once she had made a decision “there is no going back”, and as a result, she has managed much of her treatment, appointments and support services herself. When looking for information surrounding BRCA Risk-reducing surgeries, she originally came upon the Marie Keating Foundation as one of the only outlets of accurate information and support for the BRCA Community in Ireland.
“I attended one of the Foundation’s virtual BRCA conferences during COVID and I found that invaluable. This is where I got most of my information and it helped me feel secure in the decisions I had made when it came to facing menopause and all the other things that come with BRCA. I also went through the Foundation’s Peer to Peer support network and spoke to one of their volunteers and it just put my mind at ease. I’m now a member of their Online BRCA support group, and I love that I can dip in and out of meetings and that my life doesn’t need to be consumed by this one part of me.”
“The Marie Keating Foundation has been one of the only places I found that provided up to date, and supportive information for people with a BRCA gene in Ireland. The ladies in our group are much more than a support network, we are there for each other, share information and keep each other up to date on all things BRCA. It’s nice to know that you are not in this alone, as sometimes that is how it can feel, and that you have a network of people, all different ages, from different places, some with a cancer history, some not, all coming together to support each other. It’s a club no one wants to be in, but we’re here now, so we might as well make the best of it.”