Living with BRCA1: From ticking time bomb to taking action

It’s been almost 6 months since I tested positive for the BRCA1 gene mutation. That means six excruciating months of living with BRCA1 feeling like a ticking time bomb and being at worryingly high risk of developing breast or ovarian cancer – may be both – over my lifetime, maybe over the next couple of years. Who knows? I don’t have enough women in my family to know how this could play out for me.

After spending a couple of months in denial, I went into a total research frenzy. I became obsessed with finding out the answer to everything about my new mind-bending prognosis to make sense of this crazy world of living with BRCA1. I had so many questions and thoughts on repeat in my brain it was utterly exhausting and overwhelming. Every spare minute I had I was lurking around in BRCA Facebook support groups and BRCA threads in cancer charity forums, feverishly devouring other women’s stories of their BRCA journey and their version of living with BRCA1 – the good, the bad and the ugly.

With every story, I anxiously weighed up my options, which I began to realise were not as many as I had hoped for a woman in her 40s in this day and age.

As I write this, I already have a 1 in 100 chance of developing breast cancer anytime now and that gives me the cold sweats just thinking about it. I know I need to trust myself, have courage, and blow this baby wide open.

Living with BRCA1

Living with BRCA1: No easy magic bullet

After countless conversations, I began to realise there is no magic bullet here other than to have preventative surgery. At my appointment with the Genetics team at The Royal Marsden to which I turned up still clutching at the hope that I wouldn’t have to have my ovaries and breasts removed dissolved quickly. The brutal reality of what I was dealing with smacked me right in the face.

Any noninvasive treatment using PARP inhibitor drugs in a preventative manner that might suppress the faulty gene expression instead of ops was at the very least five years away. At the moment they are only used for actual cancer treatment and are at the time of writing not even in the early trial phase for preventative treatment. Even if I got onto a trial, there is no guarantee that I would then be given a placebo. And of course then I would also have to sit and twiddle my thumbs for a number of years, by which time I could have already developed cancer. And that is not a chance I’m willing to take. Ultimately I began to realise my options were:

  1. Go through the excrutiating pain of taking a wait and see approach of being monitored for breast cancer through regular MRIs, mammograms and freaking out every time I thought I found a lump in one of my breasts. Note, there is no effective screening process for ovarian cancer. So that basically means just waiting to see if and when the cancer shows up and then having to deal with it and the potentially horrific treatment that fighting cancer involves. Thanks but no thanks.
  2. Taking place in The Protector Study to have just my fallopian tubes removed because it’s estimated that around 70% of ovarian cancers start there. I was seriously tempted by this but at already 41 years of age and most ovarian cancer risk presenting itself from age 45, I felt I didn’t really have the time to be messing around with this one. Ultimately I would need to have my ovaries removed in the end anyway and this felt like simply delaying the inevitable….
  3. Having my ovaries removed, my breasts removed and the reconconstructed. The full shebang. Jesus.
  4. Put my faith in alternative approach mainly through lifestyle, diet and herbs and supplements known to have cancer suppressing properties. Ultimately I was just not willing to put my eggs in that basket – as big an advocate I usually am of the natural approach – when essentially my life was on the line.
Living with BRCA1

Step up number three

I knew that whichever way I sliced it, the only option to help keep me cancer-free, alive and well would be number three.

So now I spend my free time looking at pictures of reconstructed boobs convincing myself that I will be ok with my future double mastectomy and reconstruction, that the scars will not be too bad and if they are, that I will try to turn them into something positive by having an artistic tattoo inked over them.

I am also shit scared of the hormonal mess that may ensue from having my ovaries removed – even with HRT which doesn’t mean it will all be rosy. I’ve been there before when I had a total thyroidectomy due to precancerous cells in my thyroid and it was not pretty let me tell you. So I’ve booked an appointment with hormone specialists at The Marion Gluck Clinic to start that conversation and get the best advice I can get.

I’ve also been really lucky to find a couple of amazing BRCA positive role models in my personal network who have been there done that and are helping me to deal with all the things I am so scared of. Questions like will I still be the same person? Will I still like myself? Will it affect my confidence? Wow about my libido and sex?

In the final analysis, it is a big thing having two things massively associated with your womanhood removed, and it is that at the moment that I’m finding the hardest to come to terms with. But then when you stack that up against cancer….well, how could I be so vain? But there it is.

Living with BRCA1: So what’s my game plan?

Right now, I’m waiting for my breast MRI results, hoping that there isn’t something lurking there already. And my rebooked mammogram- because I bloody well got pinged and had to go and take a PCR test which scuppered my previous appointment – is now ticked off. And so I wait.

Once I’ve had those results and know what I’m dealing with, I’ll be able to move forward. My plan is to immerse myself in the Christmas festivities and live life to the max with as much joy as I can possibly cram into it, then come January it’s time for shit to get real. I need to push the button and say I want to move forward with the procedures and stop cowering behind the sofa, starting with the oophorectomy (that’s ovaries removed to you and me love). I know I can do this, I’ve got to be fierce, a previvor, and do it for all those women who never got a chance to do so. I’m doing it for me, my daughter, my family, and for every woman who never made it this far.

Woman photo , People photo created by wayhomestudio, Ribbon photo created by rawpixel.com – www.freepik.com

17 thoughts on “Living with BRCA1: From ticking time bomb to taking action

  • Hugs to you dear. Iā€™m proud of your courage facing BRCA1 heads on. I have never heard of it by the way so thanks for sharing and putting in the links to help with further reading.

  • I admire you so much for how strong and resilient you sound throughout all this. Im sure that you are helping more women than you know just by sharing your journey with this and your decision making.

  • Hope you’ll get good results soon and realize your game plan. In this situation the most important thing is to be patien, positive. Yes I know it’s not so easy to follow these things. But you should try, especially when you have a family, who loves you. Good luck! šŸ™‚

  • Enjoying the holiday season as much as you can seems like a great plan for the now. For the future you have a lot coming and I wish you the best of luck.

  • Kudos to you for educating yourself on all the options. Take a deep breath then take your time making a decision.

  • Now that you know, it’s certain to be tough but I think you made the right call for yourself. I wish you peace and comfort on your journey.

  • Yes, I hope you do enjoy your festivities to the fullest. Just a note, I had my ovaries removed in an emergency hysterectomy. The dr. said I would be a mess, going into instant menopause, but that never happened. Knock on wood. It’s been a few years now. šŸ™‚ Good luck to you!

  • Oh wow! I am so glad that you are aware of your health conditions. It will benefit you so much as far as your future. Much luck!

  • I got a letter from oir Australian Health Department reminding me to take a breast examination (which I will!). I can’t imagine what you are going through. Sending you virtual hugs.

  • I wanted to check my breast too because sometimes it gets hurts and I can’t even breath. Thank you for testimony.

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