When Shani attended one of our Being Together events back in 2014, she had no idea that an expert Q&A session would have such a dramatic impact on her life. Here Shani talks about ovarian cancer and what it really means to test positive for the BRCA 2 gene…
I was diagnosed with ovarian cancer back in February 2014.
I’d suffered from IBS for years, but when it began to get gradually worse I decided to make an appointment to see my GP. During the exam, the doctor noticed a swelling near my navel and referred me for an ultrasound. He told me that he thought it was probably just a hernia, so I wasn’t particularly worried. No one asked if I had any other symptoms. I was just told that it [the hernia] was something that could be dealt with once I got back from a planned holiday.
When I got home I went to see a private consultant, and he sent me for a CT scan. The next day, he called to say he’d looked at the scan and my ovaries appeared to be surrounded by fluid – which was bad news. At the time we had no idea what that really meant. I decided to check it out on the internet– as you do – and abdominal fluid was one of the suggested symptoms of ovarian cancer. On Tuesday I went back to the hospital to speak to my consultant, and was diagnosed with stage IIII ovarian cancer.
After my appointment I had to start the long road of living and dealing with ovarian cancer. Since then I’ve tried to remain positive – especially during the chemotherapy and after my operation.
Because I had no family history of cancer, I really had no idea about the BRCA gene or the familial risk of ovarian cancer. I only found out after attending one of Target Ovarian Cancer’s Being Together days. Someone put a question to the panel and that’s the first time I heard anything about BRCA and the genetic risk.
I have two sons and a daughter – as well as nine grandchildren, and they were all a big factor in my decision to ask my oncologist to refer me for genetic testing. My doctor sent me to see a counsellor in London, and I was asked to fill out a form about my family history. Other than a cousin and an aunt who had bowel cancer, there wasn’t any real family history of the disease. Maybe that’s why I was told that I was at a very low risk of actually having the gene.
I had a blood test and was told that I’d get my results in about 10 weeks. When you go for genetic testing they ask you how you’d like to get your results. You can choose to have them sent to you by post or get them over the phone. I asked for them to call me and let me know.
The estimate given by the clinic actually turned out to be spot on. Exactly 10 weeks after my blood test I got a phone call from the genetics counsellor telling me that it was bad news; I’d tested positive for the BRCA 2 gene. I was completely stunned.
Before the test no one had questioned me about my thoughts or feelings. I’d pretty much gone from being told I was ‘low risk’ for BRCA to having to deal with yearly breast examinations. Other than my result, the only other contact I had with the genetics team was when they gave me a letter to pass onto members of my family explaining the gene and how to go about getting tested. That’s how it was left.
Since getting my result, one of my brothers has tested positive for BRCA 2. My two sons are currently awaiting their results, but my daughter definitely has the gene. I’ve talked to her about having a hysterectomy. She already has four children so it’s definitely something she will consider.