I’ve got 99 problems but my tits ain’t one

By: Susan

I’m Susan and I work in digital communications in London and this is my story of being tested for a BRCA mutation, my choice to have preventative bi-lateral mastectomy and what I have learned about myself through this life changing process.

It was May 2013 when Angelina Jolie announced that she was a carrier of the BRCA1 gene mutation. She stated that this had given her a 87% chance of breast cancer and on the back of that knowledge, had made the decision to have a preventative bi-lateral mastectomy.  

Back in May 2013 I was still five months away from receiving the results of my own blood test for the BRCA2 mutation.  When I read her announcement and brave surgical decision, I remember thinking that Angelina was such a perfect ambassador for BRCA awareness and breast cancer prevention. To me she represented beauty, femininity and, above all, strength.  I thought that if my results showed that I carried the mutated gene, then I would be proud to be associated with her.  

You see, two years prior to Angelina’s announcement I had begun pursuing genetic testing as I became increasing aware of the prevalence of breast cancer on my dad’s side of the family. My dad’s mum had breast cancer. As did his sister (three times no less), his aunty and his female cousin. That’s a lot of breast cancer to consider.  

Because of this niggling family history, I found myself broaching the subject with a practice nurse during a routine pill check in the spring of 2011. It was a sort of ‘by-the-by” kind of thing. I hadn’t previously discussed my growing concerns with anyone, not with my then partner, nor with my family or friends. To be brutally honest I wasn’t even sure what to ask…  

*deep breath*    

“There’s a lot of breast cancer in my family..” I began.  

“What side is it on?”  

“Mainly my dad’s.”   

“It doesn’t come down the father’s side” I was told by the nurse. Dismissed. Case closed.   

Months later I tried again. Another pill check. Another practice nurse. Again, I told them about my family history of breast cancer.  

“It doesn’t come down the father’s side”, I was told again.  

I wasn’t taking no for answer this time.   

“It’s on my mum’s side too.” I pressed, determined not to be fobbed off.  This was true, my mum’s sister had finished her treatment for breast cancer and was still being closely monitored. So, on the back of it being present on both sides of my family, the nurse (I have to admit, somewhat reluctantly) referred me for genetic testing. 

For this genetic testing meeting I was asked to bring in a family tree with the types of cancer my relatives had developed and the age they got it.  After the consultant looked at my family history, he confirmed that due to the breast cancer history on my dad’s side, it did suggest that hereditary breast cancer ran in my family.  To be certain I would have to have to have a blood test. Before that I would have to have genetic counseling so I was aware of the impact on my life should my test come back positive.    

I had my genetic counseling and blood taken in October 2011. However, before it could be tested for the gene, a geneticist from my team explained that my breast cancer surviving aunty (my dad’s sister) had to have her blood tested first. This was to try and identify a mutation in her DNA. It’s like being given a book and looking through it to find a spelling mistake. Once you find a spelling mistake in that book, you know what you’re looking for and it’s easier finding it in other books.  The other ‘books’ being my dad and myself.  

Thanks to the complexities of the UK’s National Health Service (NHS) and the difference of BRCA testing criteria between NHS areas it took a long time to get confirmation. My auntie’s genetic team in the North East had a stricter testing criteria than my team in London and were very reluctant to test her. In fact they initially flat out refused. It took some lobbying on my part to push this along.  I say lobbying, I simply told my softly spoken geneticist in no uncertain terms, to Make This Happen.  I remember saying to him “I don’t care what their criteria is, this is about me.”. I had gotten this far into the process, I certainly wasn’t stopping now. To his credit and to with my undying gratitude, he made a passionate case for me, pointing out that my auntie had had breast cancer three times, and so they agreed to test her. Result!  

So, after waiting a painfully long year to find out that my auntie carried the mutated BRCA2 gene it was my dad’s turn to get his blood tested. He had the same spelling mistake. Then it was finally (finally!) my turn. After two very long years of waiting, somewhat bizarrely to the very day, I finally got my results in October 2013.  

Being BRCA2 positive with my genetic variant (there are hundreds of known variants) put my risk of getting breast cancer somewhere between 70%-80%. Not as high as Angelina as the BRCA2 mutation carries less risk, but still very high. All things considered I think I took this news on the chin, as soon as my dad told me he had the gene I kind of knew deep down that I had it as I don’t physically take after my mum. I only cried that day because Billy Elliot is a very emotional musical. Honest 😉  

I was immediately put under yearly MRI monitoring. At first, I was fine with just monitoring. Cutting off my healthy breasts felt counter intuitive and unnecessary.

However, after my second MRI scan in January 2015 I had had enough. Scanxiety is a real thing and I kept reminding myself of how high my risk was. I was fed up wondering after every scan if this was the year I would get breast cancer. I decided it was no way to live.  

Reader, I chose to have a preventative bi-lateral mastectomy.  

I had this preventative bi-lateral mastectomy with immediate reconstruction in December 2017.  Was this an easy decision to make? Hell, no. Was the recovery difficult? God, yes – more difficult than I imagined, both physically and emotionally. It’s a weird grieving process. It’s traumatic. It’s painful. It’s effectively an elective amputation which I stupidly tried to minimize because I didn’t have breast cancer.  

Am I glad that I had it done? 100% yes. I no longer have the threat of breast cancer hanging over my head. My risk has been reduced from 80% down to somewhere around 5%. Hooray!    

Not only do I no longer worry about getting breast cancer; aesthetically, I’m very happy too. I had a direct to implant reconstruction, placed partially under the muscle.  I had a boudoir style photo shoot before my surgery to help me say ‘goodbye’ to the girls. Not only did this help me to emotionally prepare for my upcoming physical change, it also gave me an opportunity to compare my breasts as to how they used to be. Looking back, I genuinely think they look better now post-surgery. Thanks to my clever surgeons I managed to keep my nipples and I’m roughly the same size; both of which I’m thankful for. I didn’t want to feel as if I would be losing anything from having this annoying mutation.    

I now have more headspace. I may not have had breast cancer, however just like having breast cancer, my life was effectively put on pause and everything revolved around hospital appointments and surgery consultations. It’s no exaggeration that it took over my life for many years. I was mono focused – reading, researching and making decisions. Literally everything I did in the year leading up to my surgery date was to help me prepare for it.  Work was something I did to pay the bills and I wasn’t even considering a new relationship.   

Having a BRCA mutation does focus the mind, at the least the thought of having it definitely did. I broke up with my ex-partner in 2011 soon after I had my genetic counselling and gave my blood sample to be tested. It wasn’t the reason we broke up, however I believe it was a factor. The thought of spending the rest of my life with someone who moaned when I had a cold wasn’t really appealing.  If they couldn’t care for me when I had a virus for a week (Susan, I’m playing a game), what would they be like if I had cancer? I imagine probably a bit sh*t.   

Actually, it’s only just having written this that I’ve realized I’ve cut out some unhelpful people in my life (as well as cutting out unhelpful breasts) as part of this journey.   

Reflecting back, I’ve definitely learnt a lot about myself. I had many ladies said to me that they couldn’t do what I have done. And once, years ago, I’m sure I felt like that too. However, I no longer remember that person. I’ve come to realize that people are stronger than they believe themselves to be.   

More specifically, I am more stronger than I believed myself to be.  

Perhaps above everything else, I feel A LOT of gratitude. Grateful to be able to be tested and know my risk. Grateful that I ignored what I was kept being told about hereditary breast cancer genetics and stubbornly and persistently advocated for myself throughout my testing journey. Grateful that my geneticist advocated on my behalf. Grateful that I had the choice to prevent cancer from happening to me and family. All this made me feel (and realise) that I’m an active participant in my life and not a passive bystander. It’s with this mindset that I successfully coached myself to prepare myself physically, mentally and emotionally for my surgery and now I’m halfway through a life coaching diploma. I love the self awareness and can-do attitude coaching gives you and I want to help people tackle their goals and improve their lives through the life changing magic of coaching. I’ve come out of this with a new purpose and an improved mindset.   

And despite the hurdles I faced in getting tested, I cannot stress enough that I am beyond grateful to the NHS (the UK’s National Health Service). I can’t imagine having to deal with all the above and battling with health insurance companies to pay for the testing and procedures that I wanted. Anyone who has had to do this in addition to dealing with breast cancer or breast cancer prevention is a real warrior in my book.  I am forever grateful that because of the UK’s social healthcare system, cost just wasn’t an issue. I could just rest, recover and just concentrate on healing and processing what I had just been through. 

It was even the little things that my hospital provided that made all the difference; like fitting me for a bra. The last thing that I wanted to do after major surgery was order a bunch of expensive bras in multiple sizes off the internet and just hope for the best.  Luckily (and unusually) for an NHS hospital, mine had a post-surgery bra fitting service. A super cheerful and very patient lady came to my hospital bed and provided me with lots of bras to try on until we found a style which was both comfortable and supportive for my new implants. She generously gave me four to take home with me (I think she was only supposed to give me two…!) and I wore these night and day for six weeks and then just nightly for months and months after that. The right bra is crucial for your implants to correctly settle into place and they certainly did that for me.

As well as having the physical support of a Very Good Bra, I’m also grateful to have the ongoing emotional support of the BRCA community. No one wants to become a member of the preventative mastectomy club; however, I’ve discovered there are definite upsides in joining the ranks. Not only have I future proofed myself against breast cancer (I secretly call myself Susan 2.0 now) and can crack on with my life, I’m proud to be part of a group of people who have had to make these difficult choices.   

We are bold. We have courage and we can definitely do hard things.   

Instagram @lookatsusie

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