Jo Peek: “Everyone should have the opportunity to know what their genetic history is – it can save lives”

Jo discovered she carried a BRCA1 gene mutation when she was offered testing through a trial at St Bartholomew’s Hospital in London, where she was being treated for ovarian cancer. In the past, Jo had been told not to worry about having a test despite a family history of cancer. Jo shares her story and how opting in to be tested gave her family the chance to discover their risk too and be forewarned. 

I was diagnosed with Stage IV High Grade Serous Ovarian Cancer in September 2017. 

I had taken no notice of my symptoms, putting them down to age or the menopause or something I ate or drank. I had never heard of ovarian cancer and thought I had IBS. In fact I said this to the doctor when I eventually went. 

Once diagnosed I started chemotherapy in St Bartholomew’s Hospital in London and it was during this time that a genetic test trial was being undertaken. They asked me if I would be happy to take part, of course I agreed. They would take samples of my blood from my routine blood tests and would take part of my tumour after my surgery. 

I had my full debulking surgery in February 2018 which thankfully, at this time, cleared all of the cancer to our knowledge (unfortunately I have since had two recurrences, one ongoing). It was while I was in hospital that I was told the results of my genetic testing, it had come back as positive for the BRCA1 gene mutation.

When I had been filling out the required form for the testing I had to try and list most of my family history. My mum, the youngest one of 12, had died from brain cancer when I was 15 years old. It was hard to find out what her siblings had died from. 

My dad was a bit easier, he was one of five. Two of his sisters and a niece died from breast cancer, one niece died from ovarian cancer. His brother died from pancreatic cancer, his sister has survived lung cancer. Dad died from a tumour in his bile duct when I was 26. In hindsight we think he hid his illness and this may have been a secondary cancer. 

Cancer was very much on my radar as well as my brother’s and sister’s, but every time any of us voiced this worry to a doctor we were told not to worry. No testing was ever mentioned. 

Once I had been given my positive result I needed to let my family know, to give them a chance to get tested and be forewarned. This was hard on them as not only were they dealing with my diagnosis of cancer but also that there was a chance that they had a genetic mutation that left them pre-disposed to cancer. My sister took it particularly hard, but I told her and all of the family that I felt this was a gift I could give them. It was a gift to be able to find out if they had this gene mutation, so they could be monitored more closely, check for symptoms and be taken seriously if they had any worries. I wondered - if I had been tested sooner would my cancer have advanced as far? If dad had been tested would his outcome have been any different? If my cousins had been tested would they have survived?

Thankfully my sister's test came back negative, which means her son and daughter will be unaffected, as did my daughter's, meaning my granddaughters will be ok. My brother has tested positive, but at least now he knows. Now he can be aware that he has this genetic fault and he can tell his son. 

My son is yet to have the test and I understand his hesitance. It is not an easy thing to know, but I truly believe it has proved much harder not to know. My family history proves this. Everyone should have the opportunity to know what their genetic history is – quite simply, it can save lives. 

Visit our Hereditary Hub for more information about genetic testing and what to look out for in your family history if you're worried about a risk of cancer.