October is Breast Cancer Awareness Month and to commemorate it, WeAreTheCity will be profiling a variety of different women who all carry the BRCA1 or 2 gene mutation.
These mutations give the carrier a 75 per cent chance of developing breast or ovarian cancers. It is a hereditary gene, which can be passed down through the male line, as well as the female.
Angelina Jolie famously had this surgery a couple of years ago but the National Hereditary Breast Cancer Helpline say that the message still hasn’t really filtered down to the public yet.
One in 200 people carry a fault in a high risk gene that predisposes them to an increased risk of developing breast, ovarian or prostate cancer.
The hope from these articles is to give a spotlight to these incredible women and to raise awareness of the BRCA gene mutations.
Kelly Brawn, 38, is married to Chris and has two beautiful sons, Xander, 4, and Charlie, 2.
She currently works as a reprographic assistant at a school in Uppingham.
She was a season ticket holder at Man Utd for 19 years with her dad, up until the year Xander was born. She has a 15-year-old half-sister called Alice. She has completed many fund-raising challenges including the New York Marathon, Silverstone half marathon, Great North Run, Run to the beat and two moonwalks and a half moon.
How did you find out that you had the BRAC gene?
I never knew anything about the BRCA gene until I received a letter in the post in 2004 from Addenbrookes Hospital telling me that my mum had given her blood before she died and they had finally got around to testing it. They found she was a BRCA1 carrier and would I like to go in to speak to a counsellor and then look at getting tested.
I met Anna, who was my counsellor – she was wonderful (unfortunately no longer at Addenbrookes) and was a strong support.
I had a couple of counselling sessions about how it would affect me and my life and did I want to have the test. I think I always knew I was a carrier, so I went ahead and had the test.
It came back positive to be a BRCA carrier. I still remember looking at Anna’s face and saying ‘I haven’t got it?’ and she said, ‘no you have’.
I coped quite well at the time, but I can remember how upset my dad was though and I visited him that night with my now ex-partner. He was so upset I hadn’t got his stronger genes.
How have you coped with the challenges that you’ve faced since?
Everyone is different – I have coped when others haven’t and I have completely broken down when others are strong.
Because I found out when I was 24, I took the option of just being monitored and Anna was amazing and arranged for me to have MRI scans every year to check my boobs.
One of the first challenges I faced, was when a scan came back and they could see a mass. I had an ultrasound, mammogram and biopsy.
I was quite fine with it all until I had a call saying the doctor wanted to see me urgently with my test results. I cried so much thinking this is it. Turns out the white mass was just tissue and when I have my periods it caused a change in my boobs and the way they looked on a scan and the doctor was going on holiday and wanted to see me before she did.
From that point on, I was only allowed to go during a certain point in my cycle.
When I found out about BRCA, there was not much about or really anyone to talk to. I just threw myself into life, then when I had to go for my scans it came back to the forefront of my mind.
I did a lot of work for Race for Life and Cancer Research where I was interviewed and discussed the subject on local TV and in the papers.
The biggest challenge was when I first started seeing Chris. I gave him the option to leave our relationship and walk away because of the BRCA gene. I didn’t want him to have to watch me go through surgery unless he was really sure that he wanted to be with me. Whenever I think about struggling, I think of my mum giving me this gift of knowledge that I can do something about.
When it came to my double mastectomy and reconstruction, though, I felt very different.
It all happened so fast with a cancellation appointment that I didn’t really get to think about what was happening, but after I felt anger, hurt, every emotion under the sun. I coped by vlogging on Facebook, with my friends in a group I had set up and it has taken six months to get to a really good place in my head.
What support have you received? Do you have a strong support network of friends, family etc. or have you been supported by other networks?
After my operation, you could not fault the support network, which I put in place.
I was very different – I never wanted my husband to be a part of it all. I needed him to focus on the kids and keeping them in a routine. I had left presents for when they missed me and we Facetimed every day.
My personal support was from my dad, step-mum, sister, Alice, mother-in-law Pauline and various friends and family, who took the time to visit and send cards.
I spent six days in hospital and my dad and step-mum where there the whole way. The following weeks were split between my mum-in-law staying one week, then my step-mum, then Chris having a week off and then repeated.
My step-mum, Trish, took me to all my appointments during the week and when everyone had to return to work, my uncle Vic, began to help me with the boys in the morning, as I was still not meant to lift them.
My sister Alice, though for a 15-year-old, 14 at the time, was so wise beyond her years. She helped me wash and change and do my hair and she spent days with me just watching movies. She seemed to just understand and missed time with her friends to help me.
On down days, Wendy and Becky would be in touch to see how I was from posts I had written on Facebook.
Now I cannot write all this without mentioning Xander and Charlie, who where my strongest strength. It was not easy for a three and a one-year old to realise that mummy couldn’t lift them.
However, they adapted; they cuddled me gently; they asked questions about my bandages, about my scars, about the healing. The more they adapted, the more it helped me gain strength and stick to the rules set out by my plastic surgeon. Without following the rules, I would not be able to pick my boys up in the time frame she had given and be ready to go to Disneyland Paris in the December.
I was also very much supported by the people on my Facebook group, MY BRCA1 BOOBIE JOURNEY. I documented most days, from the first shower without a cleavage, to not having the feeling of an elephant on my chest anymore.
But behind all the help that I was given was an even bigger network, Trish’s daughters, her work, Pauline’s work, Philip, my father-in-law – they all were unselfish enough to allow Trish and Pauline to look after me at the expense of them seeing them. Words of thanks will never be enough.
I also started seeing a private counsellor, which helped enormously.
How did you become involved with the campaign for Breast Cancer Awareness Month?
NHBCH were looking for volunteers to help put together a journal for people going through or about to go through the surgery I had. I know how much writing my feelings down and vlogging helped me, so I applied along with my friend Louise and we were very lucky to be accepted.
Angelina Jolie famously had risk-reducing surgery – how important was it that she told the world?
I was very, very mixed on this!
There are quite a few celebrities out there who have this gene fault and made the decision to go public.
Sometimes when you know you have something, then you don’t want to hear about it constantly on the radio, as it just brings worries and concerns to the forefront of your mind again.
However, the more I move on with my journey, the more I think she did the right thing.
Unfortunately, some people then started having the procedure without the need to, without all the facts but she has raised awareness for millions of people and if that then gathers momentum for people to think, ‘stop I need to be tested’, then it was a brilliant thing.
How important is it for people to see women who’ve had mastectomies in the public domain?
Oh, my this is just so important!
I had some photos taken before my journey of my boobs and I have documented them during and after the process, with some new ones being taken for me for my year anniversary.
I wish I had seen others with the before, after and during it makes all the difference.
I didn’t keep my nipples, so I am very proud of my scars and I am very happy to show them to people to say there isn’t anything to be frightened off.
I think to see a difference in all ages as well makes a big difference.
What do you hope to achieve from the campaign?
I am looking for two things; one to make one person aware of the BRCA1 and 2 genes and hopefully get them to ask themselves the questions and look for any links in their families, to get tested and use the knowledge to make decisions in their lives.
My second thing is some type of closure for myself and my eldest son Xander, who still to this day, a year on, worries when I go to the doctors for my boobs. Before I flew to Austria, he woke to tell me that my boobies where all better I didn’t need to go now. I want him to be proud of mummy and proud of how my body looks and know in time I did all this for my family.
What else do you think could be done to raise awareness of the BRCA genes? Should the government/NHS be doing more?
The government should always be doing more in supporting medical breakthroughs and learning more about different types of genes.
The NHS, in the 17 years since my mum passed away, has achieved so much in gaining knowledge of how BRCA genes all work.
I would say it would be nice for more doctor’s surgeries to know about the gene fault and not dismiss people, but I think that will only happen over time and with exposure in the media and people challenging them. I am very lucky my surgery has a few BRCA carriers and there are some of the doctors there who are very clued up on it all.
How can other people worried about the BRCA genes get the help and support they need?
Find some groups online – there are many of them out there if you just want to try and gather information. The main place is the helpline through Wendy, Becky and the team are amazing.
Sometimes ,it’s just that little reassurance you need to know you are doing the right thing or to answer the question that may seem like the silliest one, but it is in fact the one that gives you the knowledge you were looking for.
Do you have any advice for anyone going through a similar thing?
I have advised some friends in the past. If you are worried, get a pen and write down the family links you have, were you are worried.
If you can see a link then go and seek advice from either the helpline or your GP.
Your GP can refer you to genetic specialist and then they will be able to guide you through everything.
If you don’t get the answer from your GP, contact the helpline and they can advise on the next steps.
Always remember though, you are not alone out there and there is always someone logged on who’s willing to talk.
For those about to go through surgery, I won’t say it’s easy – it isn’t – but allow yourself to feel all the emotions to cry, to be angry, to be sad and follow everything to the letter – it will make your healing quicker.
The elephant on your chest will eventually leave you and when you look at yourself, try not to be sad – you are still you.
You are still beautiful and wonderful.
Anita Care have sponsored the National Hereditary Breast Cancer helpline to produce a journal featuring twelve real women who have had risk reducing mastectomies. The journal will be on sale from 1 October 2017, priced at £9.99 with all proceeds going to the helpline.
You can purchase the journal here.
