Siblings with BRCA

Siblings with BRCA 

By Alison & Emily 

When a parent carries a genetic alteration, their children each carry a 50% chance of inheriting it too. It comes down to a game of chance, will you or won’t you be the ‘unlucky one’. It’s something completely out of your control. 

 

 In 2019, we underwent our testing and discovered that BOTH of us were carriers of the BRCA1 alteration. Alison found out her result first and Emily managed to get hers on the same day, a couple of weeks early thanks to a very understanding genetic counsellor who heard her plea to find out before she went on holiday. 

 

 Fast forward to 2020 and it became a momentous year for our family. Not only were we in the midst of a global pandemic, but we both faced preventative surgeries to reduce our risk of breast and ovarian cancers. Infact, we had our mastectomies in the same month!  

 

 We were able to support each other during this time, but it had to be done from afar due to the social distancing guidelines and the fact that we were both recovering from our surgery at the same time. 

 

 Here’s a little insight into each of our journeys as we navigated our BRCA rollercoaster. 

 Alison’s story 

There was never a doubt in my mind that surgery was the right choice for me. As the mum to two children, one with autism, my priority was to be here for my kids. I wasn’t prepared to take a chance on the odds that were stacked against me, I just wanted any body part that would try to kill me removed- as soon as possible!

 

I’d been aware of our family history for many years and definitely had a feeling that something had to be the cause of the breast cancer that had ravaged my dad’s side of the family, so finding out about my BRCA alteration really didn’t come as a shock to me. I had almost accepted that I’d probably have it, and I knew immediately what I wanted to do.

 

February 13th 2020, the day of my hysterectomy. A procedure that I saw as a tick box exercise on my way to the mastectomy. Hindsight is a wonderful thing. It definitely is a big deal. Surgical menopause is a big deal. The impact it continues to have, five years on, is a big deal. I don’t regret my decision at all, I just wish I’d done more research and prepared for what was to come beforehand.

 

My Mastectomy was scheduled for March but then along came covid and the world stopped. My surgery was postponed, and I was in limbo. Cancer patients were understandably taking priority and I just had to wait. 

 

Luckily for me, my surgeon found a window of opportunity and in October 2020, I underwent my mastectomy with an implant reconstruction. It was a very surreal experience. I had to walk into the hospital alone, wait alone, wake up alone and spend time on the post-op ward without any visitors. The nursing team were wonderful, but it was a very strange time. 24 hours later, I was at home, minus my boobs. What a whirlwind.

 

I was very lucky. It was a painful first few days, but I had a straightforward recovery. The most traumatic thing for me was that I’d had to stop my HRT before my operation, and now I was having hot flushes that came at me like a train. The first time I went to the dressings clinic I broke down and cried. I couldn’t cope with all of this at the same time. Luckily, I was able to be up and about so my surgeon agreed I could get back on my oestrogen. It made the rest of my recovery bearable. 

 

Five years on, my kids are almost adults, and I worry about if I have passed the mutation on to them. No one wants their child to have to go through this. Hopefully in the future there will be advances in science and my daughter won’t have to take such drastic measures. But, if she does, she will know that she has me there to support her every step of the way. 

 

I will be forever thankful for the care I received; our NHS are amazing. Even more so, I’m thankful for the knowledge. The knowledge that enabled me and my sister to take preventative action. Many in our family were not so lucky.

 

This past year or so, I’m definitely having a ‘come full circle moment’ as I now work with BRCA+ Chat to raise awareness and support others on this journey. In the early days when I was hunting online for people who had been through this, I found Christen and she helped me so much, so it only feels right to use my experiences to help others. I love what I do and have learnt so much!

 

BRCA may have taken my body parts, but it has brought the most amazing people into my life, and that I would not change for the world.I’m also so grateful to my family and friends for all playing their part in helping me get through the most challenging period of my life.

 

 Emily’s story 

It has been almost five years since my risk reducing full hysterectomy and double mastectomy surgery. Those that know me well know that I’m not a major social media sharer about deep life events like this. I tend to like people to see just some happier snippets. However, I do respect that it’s a powerful tool to raise awareness and share experiences so I’m trying to embrace that by sharing a bit of my journey with BRCA1.

 

We learnt about the presence of this gene by a family member having been tested. I have always been breast aware with having such an extensive family history of breast cancer but hadn’t really explored this further.

 

My appointments with the genetic counsellors at our amazing local NHS hospital were the starting point. Lots of information and options to discuss once the tests were complete and results in. The time between appointments with them and being referred to surgical consultants gave me more than enough time to narrow down which routes I wanted to take.

 

In my own mind I was close to my forties, married with two children and having already discussed with my husband that we didn’t want to have any more.

 

Within 4 weeks of each other I went through both my risk reducing surgeries. Bloody hell I hear you say. Yes, I felt the same.

 

The hysterectomy was first for me, I had it during the times of Covid so had to see the look on my husband’s face knowing he couldn’t be there with me. Walking in that hospital on my own each time was huge but I’ve felt pretty positive and motivated throughout this process really.

 

My anaesthetic team were totally amazing, the anaesthetist (I wish I knew his name) that got me to relax by talking about walking on a beach in my dream travel destination -Bali – assured me they’d take care of me and that I was not alone. I tear up now thinking about that soothing voice as I drifted off to sleep. My consultant was so lovely and straight talking which I really liked.

 

Recovery was tough but manageable, menopause hitting me like a brick was a bit of a shock but with the help of a very supportive husband to mop up my tears, my beautiful children giving me all the love they could and a lot of fans helped immensely to sooth that internal volcanic heat that crashed over my body like a wave on the sand.

 

A couple of weeks after, my breast surgeon was ready to get moving too. I had reached a decision to go with the mastectomy with implant reconstruction and was keen to go ahead. Covid was coming fast, and my consultant didn’t want me to be delayed any longer. So just four weeks after my first surgery I was in and being reassured by the amazing hospital staff once again. My nerves were calmed by the good humour and support of the incredible surgical team. They always spoke to me like an adult not using ‘childlike’ simplified language which I very much appreciated.

 

Surgery went well but recovery from this was a big one. Going home with four drains was something I found really hard, there was pain and discomfort, and I do want to be honest about this. I had some healing issues which meant lots of visits to dressings clinics but if I had any worries or concerns, they were there at the end of the phone or in person. I can’t quite explain how much I needed that, people who knew what I was talking about and took it seriously. Seeing me sometimes a few times a week to get me where I needed to be in my healing process.

 

The nurses in that clinic were just incredible, I wish I had better words to use to describe them. They knew my consultant and a couple of times called him in to check if he was happy with what they were doing. Always there, never delaying my coming in. I was at risk of infection which could have meant the loss of my implant altogether and further surgery and they took this very seriously.

 

My breast surgeon is just utterly amazing. Honestly, I don’t know how else to say it. Supportive, honest, direct and so caring. He was there when I woke up rubbing my hand telling me I had done well, it’s the first thing I remember while coming out of the groggy mist of anaesthesia.

 

What a journey when I look at it in words and there is so much I haven’t included. The daily struggles, the blocked lines on the drains, trying to sleep whilst being in such discomfort, the emotional rollercoaster, the joy of being told I could start my HRT.

 

And now, almost five years on, my menopause is managed well with oestrogen gel. My breasts look great (even though I do say so myself- lots of time wearing no bra is just amazing!). I do feel older in myself and like I’ve been through the mill a little, but overall, I feel so positive about the whole process.

 

When doing extensive research on BRCA and with many appointments to discuss risk and my strong family history of potentially fatal cancers, I took the decision that if I had the chance to reduce that risk, potentially save my own life and attempt to avoid putting my loved ones under the strain and emotional trauma of a cancer diagnosis, that I should take it.

 

It’s a scary and complex decision which isn’t for everyone. I’m in no way putting this out there as a ‘right way’, there are many paths and it’s an individual choice. I just feel hugely fortunate to have been given a CHOICE- what an empowering and incredible thing that is. Also, what a huge blessing that our amazing NHS supports people by giving them that opportunity. I cannot put into words how lucky I feel.

 

Genetic testing for myself, my sister and others in my family has allowed us to make informed, educated decisions on how to manage our own individual risks.

 

Not everyone that gets breast/ovarian cancer carry the BRCA gene, and some with it may never become cancer patients. However, an awareness of a family history can open the discussions that could lead to you being in place of all the facts. Information is empowering and can lead to a plan.

 

Now, to my real plea and point of this post…. If you suspect / notice any changes in your body then please do get some advice, talk to your GP or health professional. They would much rather take that time and it be nothing than something. Any time focusing on your health is not a waste.

 

If you are concerned about your family’s health history, talk to your GP. If they cannot answer your questions, they might refer you to genetic counsellors who may be able to advise further.

Give yourself the time and care you put into others. You and your loved ones deserve it.

 

Please, please be breast aware, ‘feel it on the first’ is a good place to start. First of every month have a good feel. I’m sure the more regularly you check, the better the chances are you’ll notice any changes.

 

Thank you to my incredible husband, family and friends that got me through my recovery, you know who you are. It was a lonely road due to Covid, but I had so much support and I could not have done it without you.” 

Thank you so much for sharing ladies. We can’t imagine how difficult it must have been to be going through the same thing at the same time, but not be able to be physically there to support each other. Xx