Monday, 24 January 2011

BRCA1, BRCA2 or none at all? Me and Doreen...

I never met my great grandmother, Doreen. She died before I was born, a big, happy woman, but troubled with some ill health. My dad's beloved gran, he always speaks so fondly of her - she was Mop, and his eyes shine and he smiles as he mentions her. Mum and Dad have a photograph of Doreen up on the wall. She's young, in her late teens, dressed up in a frilly dress and bloomers, with a bonnet and parasol - and the very strange thing is she looks like me. Even the same expression. How funny that you can look at a picture of someone you never knew and see yourself staring back.

Legacy, likeness, family trees, the past - how these things have whirled around in my head these past two weeks. I look at the picture of Doreen and I wish I could speak to her. We have more in common than our wayward dark curls, brown eyes and smiles (and love of frilly parasols).

Doreen was 34 when she was diagnosed with breast cancer. It was 1939. In those days, the treatment for breast cancer was brutal. A radical mastectomy, lymph nodes and muscles out from under the arm and I imagine some horrendous radiation treatment too, although that is conjecture on my part as Dad doesn't know. He remembers her terrible scars though and the fact that she couldn't play the piano due to the pain and constricture of that scarring. I have thought a lot about Doreen since I was diagnosed at 33 - did she feel the same fear that I felt? What was her experience all those years ago? Doreen beat her cancer and carried on with life. She died of something completely unrelated at the age of 68. I have often looked at her photograph and smiled - she was a survivor, she was a talisman.

When you are diagnosed with breast cancer at a relatively young age, it is suggested that you investigate the possibility of a hereditary link, a genetic thread running through the generations. I had my clinical genetics appointment on the 13 January. I knew about my great gran's breast cancer, but she is the only other sufferer apart from me in my entire family. I expected to be told that it was just one of those things, random, just chance - all the things that people have been telling me since that fateful day back in 2007.

The shocking reality for me is that because Doreen had breast cancer at 34 and there are only males in the direct line between me and her (my grandad and my dad), two genetic consultants have put me in the high risk category for having a genetic cause for my breast cancer and I have some stark and difficult choices ahead.

It is possible that I carry either the BRCA1 or BRCA2 gene mutation, which would increase the risk of my breast cancer recurring and give me an increased risk of ovarian cancer. I can decide not to have the genetic testing and take my chances or have the test and deal with the consequences of a possible positive result.

I don't like uncertainty. I'm going to have the test. I really fear a positive result. It will mean choosing again between screening, touching wood and crossing my fingers, or preventive surgery - a double mastectomy and an oophrectomy (my ovaries removed). At the moment, I'm scared, angry, frightened, consumed once more with the overwhelming headfuck that is breast cancer. I have really had enough. Yes, actually I'm really bloody angry that it's taking me back to hospitals and appointments and uncertainty and worrying. I was slowly getting away from all that.

But then, I know that it's never really going to leave me anyway. This is one more obstacle in the race I never in my wildest dreams thought I'd ever have to run. I did do it once, I can do it again. It is stripping me down to the quick, but I've proved I can get through and smile and live. I am wounded by breast cancer - there's no denying it's left its mark on my mind and my life, but at the same time, what point is there in getting through if I'm going to weep and moan and give up?

So - bear with me. I am going to be a pain in the arse. I am going to cry and sulk and be a hermit. I'm also going to be a normal mother and a vaguely normal librarian. I'm also going to rail and scream and worry and fret.

I might get that negative result - I pray and pray that I do. But I look at that photo of Doreen and her parasol and all I can think at the moment is that we're linked. Her face is my face and her genes just might be too.


  1. As you know I have the BRCA1 gene and had an oopmprectomy anf then profalatic mastectomy. I could always meet you somewhere in between for a chat and coffee

  2. I pray you get a negative result too.

  3. My lovely friend. I am here for you. We can drink tea with forks till kingdom come xx

  4. Wishing and hoping for the good news you deserve, lovely lady xx

  5. Hoping and praying you get a negative result.Love too you xxx

  6. Very well said. Very honest.

    My mum got the one year all clear last October and her Grandmother also had it.

    Fingers crossed for you


  7. Thanks everyone for your kind comments - it is hard at the moment, but I will get through. Friends like you make it easier. xx

    Melly - glad your mum is doing better. It is good to move further away from it all. Thank you for your kind wishes. x

  8. Hi, I came to your blog through the Gallery but wanted to comment on this instead. I really hope that your results come back negative. My aunt (through marriage) found out that she and her sister had the gene after she had breast cancer in her mid-thirties. She had her ovaries removed last month and is having her remaining breast removed soon. I think in a way it has given her a sense of control, that she is making these decisions rather than waiting for cancer to maybe someday come for her. Actually, maybe that information is useless to you, I don't know - maybe people tell you cancer anecdotes all the time and you just want to say "shut up, you're not me"?

    Anyway, I hope I haven't put my foot in it and I hope that it all goes well for you.

  9. Imperfectpages - of course you haven't put your foot in it. It is really good to hear about your aunt's experience and brave approach to something so crap. Am still processing the whole thing, but I'm glad you came here and shared it. Cancer is a big pile of shit, but so many have to face it - it helps to hear of those who are facing it down. Thanks so much for commenting - it means a lot. xx

  10. Hi there! Found you via today's silent sunday. Breast cancer always triggers a response in me as I have had two family members (mum and sister-in-law at the same age as you) suffer from it. I hope with all fingers and toes crossed that the result is negative and truly admire your attitude of facing the damn thing head on. Knowledge is often power. All the very best xx

  11. I was thinking of you at the weekend and wondering, did you have the test? Have you had results? Of course, if you wanted to tell all about it then it would already be on the blog... so really, I just wanted to let you know I was thinking of you. The aunt I was talking about had her second mastectomy last week, she is doing really well as the next part of the process is a double reconstruction so it's positive in a way... hope things work out just as well for you. x