Breast cancer awareness month: Finding Out My Family History

Author: Tamsin

I was aware of cancer when I was growing up but it wasn’t something that we talked about. My aunt had breast cancer in her fifties but lived well into her seventies, my nana eventually died of breast cancer, although not until she was in her eighties. In our early twenties, my sister and I saw a genetics specialist and we both remember the doctor’s parting words - “You have nothing to worry about. Go, live your life!” So that’s what we did.

I won’t ever forget the beautiful Spring day in May 2009 when I realised I had breast cancer. It was not long after my fortieth birthday and I was in my step-dad’s garden in North Wales. I watched two hawks fly high, high up in a blue sky. I remember the long grass and the smell of the earth. My step-dad had died a few weeks previously and I was thinking about how much he would have enjoyed having me and my sister at home. It had been during his illness that I first noticed a change above my left breast, a few centimetres below my collar bone. Lying back in the grass, I traced the outline of a crab-like shape. There was something about the way it gripped tightly to my ribs that frightened me and I was alarmed to find that it had grown without me noticing. I made an instant decision to return home to London to see my GP. When, two weeks later, I found out that I had breast cancer, I wasn’t surprised and felt relief that the waiting was over and at last we could do something.

My Oncologist asked about my family history and we talked about me being referred to a Cancer Genetics clinic when I finished my chemotherapy - he thought it might be too much to deal with while I was going through my treatment. I completed a long and detailed questionnaire about my family history over Christmas, contacting my father - who I am not in touch with and didn’t grow up with - so I could fill in the forms. It was at this point that I began to realise that there was a history of breast cancer in my father’s, as well as my mother’s family. Although fewer women were affected, their cancers had been deadly. Our family tree looked as though a forest fire had burned through the generations. I was desperately sad to learn that my paternal grandmother had died of breast cancer a few days after my birth and that we had both been diagnosed at exactly the same age.

In March 2010, the genetics Consultant explained that I appeared at low risk of having an inherited mutation and was not eligible for genetic testing. I was asked to take part in a research study looking for other mutations and I agreed readily, wanting to do my bit to contribute to the development of science. The study also tested participants for the BRCA1 and BRCA2 mutations.

In the year I waited for the results, I began to ‘move on’ as they say and to re-build my life. My hair grew back and my body recovered. There were even days when I wondered whether I had actually had cancer at all. I tried not to worry when the appointment finally came around in March 2011. Sadly, it’s only when you have had a cancer diagnosis that you really understand what it’s like to wait for scan, or test results; the sick fear that sits like a toad in the pit of your stomach, the bargaining that goes on in your head. My strategy ‘to prepare for the worst and hope for the best’ sounds glib but the reality is that I end up in a kind of madness, swinging between wild optimism and hopeless despair!

Finding out, seemingly against the odds, I did have a BRCA1 mutation came as a total shock. It’s the only time through everything that has happened that I have cried in front of a doctor. All I could think about was my daughter, my sister and half-sister. I felt like having the gene was my fault; that I was cursed. It scared the shit out of me.

I spent the weeks that followed desperately trying to find positives - ‘Oh well’ I thought ‘At least that explains why I got breast cancer’ or, ‘No one else in my family will have to go through breast cancer.’ It took a long time before I appreciated that I too faced ongoing risk; just because I had got one breast cancer didn’t mean I wouldn’t get cancer again. I felt like a cancer-bomb ready to blow up.

If like many people, your views about inherited mutations are based on the brave - and public - accounts given by Angelina Jolie Pitt, you might reasonably expect that once I found out I was a cancer-bomb, risk-reducing surgery was a no-brainer. Not a chance! I found that I really did not want to have a bilateral mastectomy. I had developed a deep fear of hospitals after my first brush with cancer and never wanted to set foot over the threshold of a hospital again. And anyway I quite liked having breasts, even if they had tried to kill me. But, I rationalised, I definitely didn’t want cancer again so I would just have to have surgery. But, then I didn’t want surgery with all its associated risks and pain. I kept going round and round, trapped in a Mobius strip of indecision.

I contacted Breast Cancer Care and the National Hereditary Helpline and spoke to other women, to find out how they had coped and what decisions they had made. I saw an amazing counsellor at Maggie’s who helped me to think about what my breasts meant to me, as a woman, as a mother, as a lover. I realised that I was never going to ‘want’ to have my breasts removed, that even though I did not want risk-reducing surgery, I could go ahead with it because it was ‘the least worst option.’ Over time, I learnt to feel empowered by my awareness about my ongoing risk; unlike my aunts and grandmothers, I had the opportunity to choose how to live with my risk and give myself the best chance of living a long and healthy life.

I did go on to have mastectomies about 6 months later but unfortunately, they were not without complications. A second breast cancer was discovered from the tissue removed from my breasts and I had to have more chemotherapy. It was a particularly sneaky cancer because it had not shown up on any of my scans so unwittingly my decision to have surgery may have saved my life. I had my ovaries removed the following year.

Through a process of elimination, we found out that I had inherited the BRCA1 mutation from my father’s side of the family, not my mother’s family as we had thought. I also found out I had a half-sister. It wouldn’t be right to share my sister and half-sister’s stories, but I’ve found it incredibly hard to stand by and watch them grapple with their own genetic heritage.  

So many women in my family had breast cancer, but I know nothing about their experiences. I find myself wondering what they thought about their illness, how they felt and coped. I can hardly bear to think of my daughter having to deal with our family history in the future but my greatest hope is that if and when the time comes, I will still be here to help and support her. I dedicate this blog to her, to my mum and the future generations of my family.      

 

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Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.

Check your breasts
Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.

Further information and support:
Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.
Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.
Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.
The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments
Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *