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.
Sarah Hale is an average, married mother of two.
She spends her life with the same juggles as everyone else with working full time as a tax consultant, and looking after her young family.
If she does have a few minutes spare, she would ideally like to spend them reading a book in the sun with a glass of wine…or catching up on sleep.
How did you find out that you had the BRAC gene?
I was laughed at when I asked my GP if I could have a mammogram when I was in my early twenties. However, after I explained my paternal family history which contained many cases of breast, skin and prostate cancers, they explained a fairly new way of thinking that there could be a hereditary link to the cancers in my family. The GP then put me forward for genetic testing, but due to administrational errors, I didn’t receive an appointment and I forgot about the whole thing until the Angelina story broke some years later, and at this time it was known that there was a BRCA gene in our family. I then perused it again, until I finally got the result in August 2015, a week before I had my second child.
How have you coped with the challenges that you’ve faced since?
I always had it in the back of my mind that I would have the gene, but I have never let it darken my thoughts. To me it was a gift to know of the faulty gene, and be able to try and prevent putting my family through the heartache that many others have had to endure. All through the genetic counselling process, I was sure what I would do in terms of preventative surgeries and I remained optimistic about the whole process. However, there have been challenges along the way.
The majority of the challenges I have faced have come through the reactions of others, who found it very hard to comprehend the consequences of the faulty BRACA gene result. Some thought I was mad to even consider the surgery, while others trivialised it with comments like “awesome, you will get a free boob job”. Trying to promote a more balanced view can be tricky at times, but given the increased publicity of the gene this became possible.
Many people do not realise that it is not only breast cancer, but also several other cancers which you have an increased risk to once you have a faulty BRCA gene. For women, the next highest risk is ovarian cancer, and so many are also recommended to have preventative surgeries to reduce this.
For someone who has had fertility issues, I have found this a harder decision than that of a mastectomy. If I were to have a full hysterectomy, which I have been recommended in my case, and I do not natural breasts, and I still a woman? These are the thoughts which play in your mind in the middle of the night, but with the love and support of my Husband and family I have come to realise that your anatomy means nothing. It is who you are and how you feel. While I do not look forward to going through the menopause before I am 40, it is the right thing for me and my family and will be the next challenge I face, and I will take it face on, with optimism and a smile on my face.
What support have you received? Do you have a strong support network of friends, family etc. or have you been supported by other networks?
I have an incredible network of friends and family. My parents, cousins, brothers, sister in laws and some very special close friends were invaluable through the whole process. Whether it be listening to me run through my thought processes about the reconstruction, supplying me with cake during recovery, or help look after my very young children who found that I was not able to hug or hold them during the early stages of recovery very distressing.
However, it is my Husband who has been my rock throughout the whole process. He has never made me feel anything other than beautiful and loved. He was always there to help me shower, change dressings and say the right things when I needed to hear them. He has been through this process every step of the way, and was even happy to move closer to family when I felt I needed ongoing support.
In terms of my own children, my daughter was old enough to notice a difference before and after surgery so I introduced her slowly with some post-op pictures before the surgery. Luckily (or unluckily) I had had many bout of mastitis so she did associate my breasts with me being poorly, and so she took easily to the notion that I was having new boobies as mine were making me poorly. I was the most nervous about her seeing them for the first time, but she simply said “They are funny, what’s for dinner”, and that was it.
When did you have your surgery? Have you had any long lasting affects?
I had my mastectomy in May 2016. I chose to have immediate reconstruction using implants and a sling attached to my chest muscle made of nylon and titanium. I was concerned that I would set off the alarms the first time I went through the scanners at the airport, but luckily I passed through fine.
I was in hospital for 5 days post-surgery, and then readmitted for another week shortly afterwards as I was suffering from a rare side effect where my nerve endings were firing and sending severe pain/burning signals to try and understand what had happened. I am told this is similar to phantom limb pain, but again I would stress that this is a very rare side effect.
Long term, I have a loss of strength and a slight restriction in movement, so I will never be a champion arm wrester, however it does not affect me day to day. I do have to keep stretching and working on the strength in my arms, but I have found a fantastic gym instructor, Madge, who understands my limitations and has bought my recovery on leaps and bounds.
In terms of physical appearance, nobody would know any difference unless they saw my scars. I am not ashamed of my surgery, and actively try to put people at ease about it. This can be showing curious friends and family my “new boobs”, or walking around my gym changing rooms without trying to hide them. I am often asked questions to which I am always happy to answer, I think it is all part of promoting awareness.
How did you become involved with the campaign for Breast Cancer Awareness Month?
I know the incredible work of the National Hereditary Breast Cancer Helpline and saw them apply for post-op ladies willing to be photographed on their social media. While my body is not what it used to be after two children, a double mastectomy and far too many cakes, I wanted to be involved. To show those going through something similar that you can feel comfortable in your own skin after this surgery is very important to me.
The whole experience has been enriching from start to finish and I have made some friends for life. During the trip to Austria for the photoshoot there were many tears, the majority of laughter but some of the sadness for the tough times we have all had to face during our BRCA journeys.
Angelina Jolie famously had risk-reducing surgery – how important was it that she told the world?
It broke the silence on mastectomies and made it for accessible for so many. I think it was important to see that after a mastectomy, you can still be attractive, and if chosen, the reconstruction process is incredible now- sometimes it would even be hard to tell if you have had a mastectomy at all. I think it made it more palatable for many partners of those going through the process to see a glamourous attractive woman come through the other side of it.
However, I remember seeing an article years ago about the Holby City actress, Amanda Mealing, and how she went public with her mastectomy scars. While Angelina helped make it mainstream, it is important to remember how many have tried to go public before and how this has touched many lives.
How important is it for people to see women who’ve had mastectomies in the public domain?
It is extremely important. The thought of this surgery is scary, but the reality does not have to be. By making post mastectomy pictures and stories available will only encourage and support other people in this situation.
What do you hope to achieve from the campaign?
To trigger the thought process for people with a strong history of cancers in their family, and to encourage them to go speak to their GP about the possibility of being sent for genetic testing. I would also like to highlight that this gene is not only passed through the maternal side, and I in fact inherited the faulty gene from my Father.
What else do you think could be done to raise awareness of the BRCA genes? Should the government/NHS be doing more?
Throughout the whole process, I have found the NHS to be exceptional. Many other countries do not offer genetic testing, or indeed preventative surgeries, but the NHS have given me world-class care that I could never fault.
However, I would like for people who are diagnosed with breast cancer to have an investigation as to whether there is a hereditary link to their illness. Then other family members can be made aware.
How can other people worried about the BRCA genes get the help and support they need?
They could contact the National Hereditary Breast Cancer Helpline who are a life support with giving that initial advice. The next step would be to speak to their GP armed with your concerns and details of cancers within the family.
Do you have any advice for anyone going through a similar thing?
A mastectomy is not a boob job, and it can be very frightening. However, it can also be lifesaving. Reach out to other people who have been through this using either the helpline or different social media groups. The support and information you will receive is invaluable and you will never feel alone.
You will still be you after your surgery, and you will find strength you never knew you had, so don’t be afraid. You’ve got this.
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.