Monday, 15 February 2016

Who do you think you are? ~ Tamsin

When I was growing up, the word ‘cancer’ was always said in hushed tones. Although I knew that my aunt had developed breast cancer in her fifties and that my nana died of breast cancer, the C-word was not something that we talked about openly in my family. My sister and I were referred to a genetics specialist in our twenties and we both remember the doctor’s parting words - “You have nothing to worry about. Go, live your life!” So we did.

I won’t ever forget the Spring day in 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 Wales. He 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 was during his illness that I noticed a change above my left breast, a few centimetres below my collar bone. Lying back in the grass, I was alarmed to find that the crab-like shape had grown without me noticing. I made an instant decision to return home to see my GP and it came as no surprise when, two weeks later, I found out that I had breast cancer.

My Oncologist asked about my family history and suggested a referral to a Cancer Genetics Clinic when I finished chemotherapy - he thought it was too much to deal with during treatment. I completed a detailed questionnaire about my family history over Christmas, contacting my father - who I am not in touch with - to complete the forms. He told me that I had a half-sister. With a growing sense of fear, I discovered that there was a history of cancer in my father’s family. Although fewer women were affected, their cancers had been deadly. I was desperately sad to learn that my paternal grandmother had died of breast cancer a few days after my birth. We had both been diagnosed at the same age.

In March 2010, the Genetics Consultant explained that all cancers are genetic in that they arise from the action of damaged genes. However, only 5 - 10 per cent of these damaged genes - mutations - are inherited from our parents. In the other 90 per cent or so of cases, the damage in the gene occurs in body cells across our lifetime, a so-called ‘acquired mutation.’ She said that I appeared at a very low risk of having an inherited mutation and I was not eligible for genetic testing. I was offered the chance to take part in a research study looking for other mutations which involved being tested for the BRCA1 and BRCA2 mutations. I agreed readily, wanting to do my bit for science.  

In the year I waited for the results, I began to ‘move on’ as they say. 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 but I think it’s only when you’ve had a cancer diagnosis that you really understand what it’s like to wait for 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 in reality I end up in a kind of madness, swinging between wild optimism and hopeless despair!

Finally, the day of the appointment came around. Apparently against all the odds, I had a BRCA1 mutation. The news came as a terrible shock. I felt physically sick. All I could think about was my daughter and my sisters. I felt like having the mutation was my fault. I felt cursed. It terrified me.  

In the following weeks, I thought about the positives - ‘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 - overall, women with a BRCA1 mutation have anywhere between a 60 - 90 per cent chance of developing breast cancer and around a 60 per cent chance of developing ovarian cancer. Just because I had got one breast cancer didn’t mean I wouldn’t get cancer again, in fact I might be more likely to develop another cancer. I felt like a cancer-bomb ready to blow up.

If your views about what women do when they find out they have an inherited mutation are based on the brave account 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 I did not want to have a bilateral mastectomy. I had developed a deep fear of hospitals after my first brush with cancer. And anyway I liked having breasts, even if they might kill me. But, I rationalised, I didn’t want cancer again either. I found myself trapped in a Mobius strip of indecision. 

I tracked down other women with inherited mutations to find out about their decisions. Counselling helped me explore what my breasts meant to me, as a woman, as a mother, as a lover. I realised that although I would never ‘want’ to have my breasts removed, I could go ahead with risk-reducing surgery because it was the ‘least worst option.’ Over time, I began to feel empowered by my knowledge; unlike my aunts and grandmothers, I had the opportunity to give myself a chance of living a long and healthy life.

I did go on to have a bilateral mastectomy about 6 months later, but unfortunately, not without complications. A second breast cancer was discovered in the tissue removed from my breast. It was a particularly sneaky cancer because it had not shown up on any scans. The discovery that I would need another course of chemotherapy was devastating and I felt more alone and more frightened second-time around. I focused on making sure I was as well as I could so that I could manage the challenges ahead. I realised how lucky I had been - my decision to have risk-reducing surgery may have saved my life.

I eventually found out that I had inherited the BRCA1 mutation from my father. I had never spoken to my half-sister but after my first diagnosis we got in touch. By the time I was due to get my test results, I had her email address and was very much aware of her waiting in the wings. It wouldn’t be right to share my sister and half-sister’s stories, but it’s been incredibly hard to watch them grapple with their own genetic heritage. Just before Christmas me, my sister and half-sister met for the first time. Our developing friendship has been one positive thing to come out of everything.    

It’s hard to believe that so many women in my family had breast cancer and yet I know nothing about their experiences. I wonder how they coped. I wish that I knew how they had felt and what they thought about their illness. It’s this silence that has motivated me to share my story. I can hardly bear to imagine my daughter dealing with our family history. My greatest hope is that if and when the time comes, I will still be here to support her. I dedicate this blog to her.   

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