Lucy's story

A portrait photo of Lucy, a participant in the ALDO project who has shared her reasons for taking part

“I first heard about the ALDO project when I received a letter inviting me to take part. I had already spoken to the NHS about having a BRCA gene alteration and had undergone a risk-reducing double mastectomy to prevent breast cancer. 

Both of my grandmothers and my mother had breast cancer. This led my mother to b tested for a BRCA gene alteration, which was positive. My test also gave me a positive result which is why I had surgery.

For me the most concerning factor about having the BRCA gene alteration is that ovarian cancer, if it is present, might be hard to catch before it gets serious. Although it was explained that the Ca125 blood test doesn’t necessarily pick up the cancer at its earliest stages, the fact that it might was enough for me to want to participate in ALDO. I have three young sons, my youngest was about two years old when the project started. I’m grateful for any help with my BRCA diagnosis. 

Participating in the ALDO project was an easy process and was well explained. I saw it as a huge benefit to me, and I welcomed it. 

Having the blood tests was straightforward. The first time, I had to explain to my GP surgery why I was getting the tests done. But following that I usually saw the same nurse, so she was familiar with me and the reasons for the tests. All I had to do was put everything into the supplied postage bag and send the sample back to the lab. 

I’m sorry that the project has now ended. I felt that it bought me time to think carefully about my decision to remove my ovaries – something I am not looking forward to, as I am concerned about the emotional, mental and physical toll it may have on me. As I’ve said, I know that the test doesn’t give me a definite answer to whether or not I have early ovarian cancer, but knowing that the project was in place and the lack of any other symptoms brought me great peace of mind.”

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