Rosie 1 – Genghis 0

Yesterday I found out that my scans were all clear. Genghis is only in my left breast. So already I am winning.

But nothing is straightforward. By way of background, my daughter was born with abdominal situs inversus with levocardia. This  means all her abdominal organs are in the mirror opposite position from where they are meant to be but her heart is in the right place. It’s rare. And it’s made even rarer by the fact that she has no inferior vena cava (major vein) and another vein has expanded to take up the function of the vena cava.

And then my son. My wonderful son. He is profoundly deaf due to a recessive genetic mutation called connexin 26. He has had bilateral cochlear implants since a week after his 1st birthday and speaks and talks beautifully. But again, not straightforward.

So it’s really no surprise that the Genghis situation isn’t simple. You see, this is the issue. I’m being tested for BRCA1 and BRCA2 as I am young to have breast cancer and because I’m Ashkenzi Jewish. We Ashkans have a higher than average occurrence of these gene mutations. My mum had breast cancer five years ago and was negative on the genetic tests. My surgeon thinks there is a very good chance I will be negative too.

But. But. My mum’s cancer was triple negative (very simply this means not affected by hormones and proteins). Triple negative is only 1 in 5 of every breast cancer. And guess what. Genghis is also triple negative. Coincidence? Hard to say.

The only reason it matters (and it’s quite a big reason) is that it affects my surgical choices.  If I’m positive for either BRCA mutation then it’s a tuppenny all-off (others would call this a double mastectomy). If not, the usual surgery would be a lumpectomy. But what if there is a possibility it’s genetic but not BRCA??  Do I have the lumpectomy and just keep my fingers crossed? Or do I bite the bullet now and go for the tuppenny all-off straight away? My surgeon said he would suggest a lumpectomy and then I can consider my options after chemo. But that might mean two operations when I might just get away with one (the Angelina Jolie option).

So you see, it’s not simple. I may have won the first round but Genghis has thrown a curve ball. I need a bit of time to consider my next move.


One thought on “Rosie 1 – Genghis 0

  1. Hi Rosie
    Ciara just told me what you’ve been going through over the past few months and sent me a link to your blog, which I’ve been reading. I was so sorry to hear that you’re having to deal with so much at the moment. Funnily enough, I was just thinking of you this morning – probably because we’re having a BNC reunion in the summer so the ‘good old days’ are on my mind. I’m sure you have lots of support, but I’m only in Finchley and not at work in the day, so can help with ‘practical things’ if you need an extra pair of hands – a bit of shopping? Just let me know and I’ll give you my number. Your blog is brilliant, by the way – you write beautifully. Lisa xx


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