When Shelley discovered she carried the BRCA1 mutation her emotions were mixed. She now had access to more treatment options, but she was terrified about what the result might mean for her daughter…
The first time I was offered genetic testing I refused. It just didn’t feel right. But after my recurrence, the oncologist told me that the test might give me access to more drugs. When the results came back positive for the BRCA1 mutation, it was such a mixed feeling. Yes I could have the drugs, but now there were potentially implications for my daughter.
Diagnosis hit me like a train
“I’ve overdone it at the gym.”
That was my first thought when I felt the lump on my belly button. I had no pain or bloating, but my husband insisted that I go to the doctor. At the surgery, I happened to mention to my GP that I’d also found a lump on the left of my abdomen, and that I could only feel it when I was lying on my side. He felt my tummy and said I needed a scan within two weeks. I went for a private scan the next day.
During the abdominal ultrasound, the sonographer mentioned that my ovaries looked “suspicious” and that “we could be looking at cancer”. That hit me like a train. I never thought I’d get it. I had such a good lifestyle.
I had a full hysterectomy. It was scary to think about waking up and potentially having a stoma bag. The thought of chemotherapy was also frightening, but the staff on the ward were extraordinary – second to none. I thought the place was going to reek of death but it was so full of life! People were chatting and laughing. I used to go with my mum and it was such a comfort blanket because I felt so safe to be there. I almost worried when I had to stop going. The staff were wonderful.
One year after my initial diagnosis there were no signs of recurrence, but after a routine CA125 blood test my oncologist asked me if I’d been feeling ill. My CA125 had gone up from 15 to 94 and a CT scan later showed that cells had come back on the underside of my liver. I was absolutely devastated. The cancer was now incurable. I went straight onto the next round of chemotherapy.
I was depressed. I felt like we were chasing the cancer down, that it wasn’t just a precautionary measure this time because we were actively trying to kill the cancer. I felt so low, but then my oncologist told me my CA125 had dropped already, and my wonderful daughter Faye helped me. She pulled me up and scraped me off the floor.
By the time I finished chemotherapy the tumour had shrunk. It’s now been 18 months since the recurrence.
Testing positive for the BRCA1 mutation was obviously a shock. I have Jewish ancestry and there was some family history because my grandmother died of ovarian cancer when she was in her 40s and my father had cancer of the oesophagus.
I’ve already spoken to my daughter Faye, 15, about all of this. She will have genetic testing when she is older, but she understands everything about it. She was 11 when I was diagnosed and so calm about it all. I’m so proud of Faye – she now wants to be a cancer researcher when she’s finished her studies. She also volunteers in a Cancer Research UK charity shop.
The simple things
I wanted to share my story to give a more balanced view. There are a lot of scary stories out there but I wanted to share something more positive.
The dark hours of the night are going to be difficult – but you’re not alone. Remember that there is help out there, and that things aren’t over until the fat lady sings. It’s very easy to focus on the negative, but there are wonderful people out there who will help you.
Now, I try to enjoy every single day. I find happiness in simple things: sitting at home, having a coffee and talking to friends. I’m so blessed to have the friends that I have – they are wonderful! It’s so humbling what others can do for you.