Could an Essex mum’s love for her family really have saved a life?

Sharon Morrison - Dart Design (Image: Archant)

She tells us about her own experiences of trying to discover if she too had inherited the breast cancer gene and her determined quest to protect her own children.

Read her story here, in her own words.

In 2004, when I was 48, I was told I had breast cancer. The tumour was removed, chemotherapy and radiotherapy followed and I got on with life as so many of us do. There was no history of breast cancer in my family, so I knew I was just unlucky; one of those statistics.

But at my five-year check-up my oncologist felt a lump, this time in my other breast. It was very small (one centimetre long, I later discovered) and I couldn’t feel it at all, even as I was being wheeled into the operating theatre; it hadn’t shown up on the mammogram either. It was a grade three, indicating that these cancer cells were of the fastest-growing variety, just like the first, but this time it had spread to two lymph nodes. I was grateful that my oncologist, who feels around 50 pairs of boobs a week, had such super-sensitive fingers, and I dread to think what the prognosis would have been if another year had passed before my next check-up.

Sharon Morrison with Jenny, Richard and Merlyn (Image: Archant)

I have three children ? Merlyn, then 19, Jenny, 15, and Richard, 13, and three sisters ? so as frightened as I was by those words, “You’ve got cancer”, I wanted to make sure they never had to hear them.

I asked my oncologist for help; perhaps I could be tested? He told me that as there was no history of breast cancer in the family, there really was nothing to worry about; 95% of all breast cancers are random. I wasn’t convinced and I was worried. A few months later one of my cousins, who had had ovarian cancer three years earlier, died from breast cancer at the age of 46. So now, I guess, I had “history” and I would receive more intensive screening, perhaps a blood test, yes? No.

It was a “no” because my two breast cancers and my cousin’s death still didn’t constitute “history”. History meant that someone in your immediate family had had breast cancer; a first cousin didn’t count. All my instincts told me the so-called experts had got it wrong and that I shouldn’t follow their advice and put my cancers down to bad luck. I needed to know more. I turned to my GP and asked him to help me get some form of screening and, within two weeks, he told me that Dr Ajith Kumar, who specialises in cancer genetics at Great Ormond Street Hospital, might consider me for participation in a cancer study. Would I like him to refer me? As if he had to ask.

Soon I was sitting with Emma Williams, a genetic counsellor, in her consulting room at Colchester Hospital, building a picture of my family to see whether there might be some links to cancer, however remote. Building this picture took quite some time as my dad was one of 14 children and my mum one of seven, but no-one, except my cousin and me, had had breast cancer.

Sharon Morrison with Jenny, Richard and Merlyn

She also introduced me to the BRCA1 and BRCA2 genes. These genes are associated with familial susceptibility to breast, ovarian and prostate cancer. If they are faulty, the body’s ability to protect you from cancer developing is reduced markedly. If a child inherits this condition, then they will not only be at increased risk of developing cancer as an adult, they will have the same 50% chance of passing the genes on to their children.

Once Emma had collated all this information she said the family history wasn’t strong enough to put me forward for a breast cancer gene test, but I could participate in a national study called The Genetics of Familial Breast Cancer Study.

This study was looking for data that might show why people have a predisposition to breast cancer.

It also involved a blood test to test for anything and everything. It was January 2010. As the months passed, I’d finished my cancer treatment and I’d still heard nothing. I assumed no news was good news. I felt pleased with myself, though; I had done everything in my power to try and identify if there was something, anything, that might make my family and me more prone to cancer. Now I must be in the clear, which meant my kids would be too. Then, 12 months later, on my eldest daughter’s 21st birthday, I received the phone call: I had a faulty BRCA1 gene.

Well, I had wanted to find out if there was a reason for my breast cancer and, against all the odds, and contrary to all the received wisdom, there was. My immediate and natural reaction was to cry my eyes out because I knew that one, two or all of my kids could be carrying this gene defect. Telling them would be difficult, especially as the most effective method of reducing the risk of cancer is to have a bilateral mastectomy and your ovaries removed in your 30s. My eldest daughter, Merlyn, was in her final year at university and Jenny and Richard were at school, so I decided that, for a little while, I would play God and withhold this information until their exams were over.

Not saying anything was far harder than coming clean. I began to fret about my non-disclosure. What if one of my children should develop cancer and it spreads? I talked to my doctor, my surgeon, my sisters and my closest friends about whether I should say something or keep schtum. Some agreed I was doing the right thing: why worry my kids unnecessarily when they have years before they can do anything about it? Others thought I was the personification of evil: how could I put my children at risk by keeping this information from them? I knew the girls would have breast screening from the age of 30, so there was time, but they needed to know. In 2013, just over two years after I learned I was BRCA1, we were all together at home and I knew this was the time. I was so nervous it was untrue, but I told them as calmly as I could about my diagnosis and what this might mean for them. I didn’t go into too much detail, but suggested they meet Emma for a more in-depth discussion about BRCA1 and their options.

Although I truly didn’t know what to expect once I’d told them, I didn’t expect the reaction I got. Merlyn, now 23, Jenny, 19, and Richard, 17, behaved with the dignity and understanding that would put a Shaolin monk to shame.

Merlyn felt certain she’d inherited the gene. “You’ve had it twice, so I think I’m next. I’d rather just have a double mastectomy and avoid going through chemo and everything that goes with it.”

Although I’d worked throughout my treatment both times, trying to behave as normally as possible, being bald, feeling rubbish and suffering from chronic diarrhoea ? AKA “everything that goes with it” ? wasn’t much fun. Jenny felt exactly the same way, but wished I’d waited longer before telling her. “In a way ignorance is bliss, but now it’s like there’s a cloud hanging over me.” Richard, on the other hand, felt a little distanced; even if he had the gene he wouldn’t be screened for prostate cancer until he was 40, and 40 to a 17-year-old is a very long way off.

After a week or so, they said they’d like to meet Emma and find out more. I set the meetings up and, unlike me, they all went in there fully informed and probably already knowing the answers to the questions they asked. Merlyn wanted the blood test as soon as possible, but Jenny wanted to wait a while as she didn’t want the diagnosis to interfere with her studies. Richard was too young to take the test, but would when he was 18.

Last year both my girls had the test. One tested positive, the other negative. I’m beyond upset, but I’m thankful too. This knowledge has given us back the ability to take action which will vastly reduce the risk of cancer.

When I set out to protect my children, I wasn’t even thinking about gene mutations; I just knew there’s usually a reason for everything and you’ll find it if you look for it. I found BRCA1 and, as much as I wish I hadn’t, my extended family and I are the safer for it.

The moral of this story could be that you should never take “no” for an answer; personally, I really do believe “mother knows best”.

First life saved

Although I was delaying telling my kids about my diagnosis, my sisters, aunts, uncles and cousins would need to get tested as soon as possible.

We believed that the gene mutation was most likely to be on my mum’s side, as my cousin who died was my mum’s niece so, very covertly, one of my sisters (who we now know also has the faulty BRCA1 gene) and I started to contact our relatives. There was no panic or distress, but a very calm acceptance of the information. One of my uncles tested positive so his two daughters were then checked; one had the faulty gene. She had an MRI scan and a lump in her breast was detected; it was malignant. She was 36 years old. After a bilateral mastectomy she had her eggs frozen and this was followed by chemotherapy. Her mum is overjoyed because she knows that knowledge has saved her daughter’s life.

What do BRCA1 and BRCA2 mean?

These genes are associated with familial susceptibility to breast, ovarian and prostate cancer.

If they function normally, they protect the body from cancer developing; if they are faulty, then that protection is lost. Eighty to 90% of women with the BRCA1 gene mutation develop breast cancer and between 40-60% develop ovarian cancer. As one copy of each pair of genes is inherited from our mothers and one from our fathers, if one parent has a faulty copy of the BRCA1 or BRCA2 gene, then there’s a 50% chance they will pass on their faulty copy and a 50% chance they will pass on their normal copy. If a child inherits the faulty copy, then they will not only be at increased risk of developing cancer as an adult, they will have the same 50% chance of passing it on to each of their children.

If you have the faulty gene and you want children, you can choose to have preimplantation genetic diagnosis (PGD). The initial steps of PGD are similar to IVF.

When the embryo has grown to eight cells, one or two cells can be removed without causing any harm and tested for the altered BRCA1 gene. Only healthy embryos are put back into the womb, usually not more than one at a time.

If more than one embryo is available for implantation, these can be frozen for use at a later date.