Why are you having a Prophylactic Bilateral Mastectomy?

Over the past few weeks, I’ve spent my time sharing stories about me, my family and my journey towards my Prophylactic Bilateral Mastectomy surgery, scheduled for this coming Friday 28 February – that’s tomorrow!!

keep-calm-cause-its-tomorrow

As you do, I held a Boob-Voyage BBQ for friends and family.  It was held at Kalinga Park in Wooloowin on Saturday and I really enjoyed spending the afternoon with some of the most amazing people in our lives.  Dissecting the nipple off the beautiful Queen of Cakes specialty cake was strange, but interesting if that makes sense.

Yas_cake

So, one of the big questions I’m asked is Why?

Why? Why? Why?

Why would anyone willingly and happily without hesitation remove their breasts?

Removing my breasts via a Prophylactic Bilateral Mastectomy was something that I started discussing about 10 years ago, long before ‘The Angelina Jolie Effect’ and back when it was probably considered quite ‘taboo’.  Angelina’s surgery journey can be read in more detail here.

Regardless of outside opinion, thoughts and feedback from the supporters and even the haters, my decision was made privately, initially by myself, then it was discussed with my supportive ‘super-husband’ and finally, with our two young girls.  We all agree it’s the next step in the process for our family.

For years I have discussed it on and off with my GP, who is about the most all-time brilliant GP anyone could ever hope to find.  Thanks Dr A!!  He has provided me with medical facts, specialist referrals, mammogram and ultrasound referral letters and pretty much anything and everything related medically to the subject.

I’ve seen specialists along the way, including a geneticist, breast surgeon, and a plastic surgeon and I’ve of course had regular screening, both mammograms and ultrasounds, not to mention the self and ‘hubby’ checking along the way.

Mammogram

When I initially explored having my breasts removed, it wasn’t long after Mum told us at the young age of just 44 that she had breast cancer.  It’s sad that I wasn’t really impacted by the news, because if I am to be completely honest, I almost expected it.

Here’s why……

I remember being very young when I first heard about breast cancer.  My beautiful maternal grandmother (Nan, pictured below), was very much another mother to me, we talked openly about one (1) of her four (4) sister’s who had died in her late 30’s of the disease.  As I grew up, breast cancer struck Nan’s remaining three (3) sister’s and she was the only female left among her siblings to not be diagnosed.   Sadly, we lost Nan to cancer when she was in her early 70’s – far too soon and so unfairly quick.  This is the last family photo we all had together, celebrating Pop’s 80th birthday.  xxxx

Nan&Family

Statistically it never looked good for the females in our family.  As I became an adult and began to look further into familial history, and the options for genetic testing including the statistics and patterns that are associated with families ‘like ours’, I knew that it was a decision I could be empowered to make.

As the oldest female in the ‘next’ generation of our family, I’m not going to sit and wait for the statistics to start working their way down the family tree.

Whether I’m ‘hit by a bus’ tomorrow or not, I don’t walk out on the street every day to the statistical chance I face with a breast cancer diagnosis in my future.

I am a triathlete and every time I ride my bike on the roads in Brisbane, I know there’s a chance I may fall, get a flat, be injured in an incident or sadly, perhaps even lose my life.   RIP to all the cyclists out there who have sadly lost their lives too soon.

TA Ghost Bike

However, I liken my final decision to have the mastectomy to choosing to ride my bike.  If I faced the same ‘high risk’ for potential death by riding my bike on the road, I honestly wouldn’t do it.  I’d jump on my wind trainer and cycle away in the safety of my garage, and some mornings when it’s time to train this is exactly what I do.  ‘High risk’ can mean anything up to an 87% chance of being diagnosed in my lifetime.

I learnt a lot during the meeting with the Geneticist.  Did you know that of women who do undergo BRCA testing, only a small percentage are found to have a mutation?  But families ‘like ours’ are still at greater-risk of cancer, the risk factors don’t go away!!

I read that when no one in the family has been found to have a detectable BRCA mutation, negative test results need to be interpreted with caution.  In this setting, a negative result may not really be negative.  This was very much news to me!  We all went into the Geneticist thinking that we would sign some forms to approve the testing procedure, little did we know that there were 30+ other genes that we could potentially opt to be tested for, some of which had high associations with links to families ‘like ours’.

A cancer predisposing mutation may still be present in the family, possibly in another gene.

It is known that mutations in the BRCA1 and BRCA2 genes do not explain all hereditary patterns of breast and ovarian cancer.  A family may have a mutation in a different gene, perhaps not yet discovered or whose clinical implications are not yet fully known.  Unless there is a known mutation in the family, a negative result from BRCA testing does not exclude genetic risk for an individual.

Argh!!  For me personally, I still had no real answers as to whether to undergo the testing……

So what does this all mean?

For me, I don’t like to overcomplicate things and tend to interpret it quite simply….the genetic testing results, whether BRCA1 or 2 positive negative, didn’t provide me with a large enough ‘comfort’ that I’d be safe if I was negative.  My final decision was based on years of discussion with medical experts, hours of reading medical journals and articles, the strong family pattern which indicates my generation ‘is next’ and finally, ultimately, my young family.

My Nan shaped me greatly in life and one day I hope that I can be the grandmother that she was to me, to our beautiful family.

Collage_Family

Yes, I may be hit by a bus tomorrow, but it’s not likely to be in the vicinity of an 80%+ chance now is it?

1 thought on “Why are you having a Prophylactic Bilateral Mastectomy?

  1. Thank you for sharing this. I am a BRCA negative but with the history as well as LCIS, ADH and Radial Scar being removed my risk is at 52.9% and growing. I am considering the prophylactic mastectomy and I really appreciated your view point, especially because I am BRCA negative.

    Thank you! <3

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