Jess’ story – “Pink Hope gave me hope, help and positive mental health”

07 Apr 2022

Jess, 28 was found to have the BRCA1 mutation in January 2022 after the mutation was found to be in her family in January 2021. Her family’s genes carry the BRCA gene mutation. Genetic testing checks for the existence of the BRCA1 and BRCA2 gene; if the BRCA gene is found there is an 30-60% increased risk of breast cancer and 20% increased risk of ovarian cancer. In most cases, surgery is recommended to help reduce the risk of cancers.

“My grandmother was told that our family carry the BRCA mutation. My mother, sister and I were then encouraged to have genetic testing done: we are all positive for the gene. [A person with a cancer-predisposing gene fault has a 50% chance of passing on the faulty gene to their child – male or female.] I started taking breast health more seriously and began checking my breasts. I hadn’t been as regular as I should have been.  

“My grandmother felt guilty that she’d passed this gene onto us. But if she hadn’t found out she had the gene we wouldn’t have been empowered to take charge of our future.

“When I found a lump in my breast I went straight to my doctor and was referred for an ultrasound and biopsy. My lump was nothing to worry about but to keep an eye on. Because of my BRCA mutation I was referred to the Peter Mac Cancer centre where I met with a breast surgeon to discuss my options for a mastectomy and plastic surgery for breast reconstruction. My risk for breast cancer was extremely high and I was advised to have a mastectomy.

“My mother who has the BRCA gene, was not advised on a mastectomy but to have regular screenings through MRI, mammograms and breast checks. Mum has had a full hysterectomy [which removes the chance of ovarian cancer]. My youngest sister, only 20 is aware of our history of the genetic mutation and will in time have the test. She hasn’t had children yet, so she will have some decisions to make when that time comes.

“I have two children. I had my kids before I knew about the BRCA gene in our family. If I’d known that I could pass this gene onto my children I would have explored other options, such as IVF, which can give you the potential to only use embryos that don’t have an abnormally-functioning BRCA gene.

“I did a lot of research myself after I found out I had the BRCA gene. The Pink Hope website and its BRCA online community helped me a lot during this time. Being able to speak to real people, who have experienced what I am going through, has been a huge source of comfort. Not everyone will know or understand how you’re feeling, so having that supportive community is amazing. Not everyone understands that having the BRCA gene is a lifetime diagnosis, it won’t go away within a week, or just because I’ve chosen to have a mastectomy. Even my family who share the mutation, don’t always and couldn’t know how I am feeling. These kinds of diagnosis’ affect everyone differently. But I’ve found women in the Pink Hope community who do.

“A diagnosis of this kind is really scary. But sharing my story with others has given me confidence. Finding and having a connection with others in the same situation has helped me so much on my journey.

“Knowing your breast cancer risk will change your life forever but it doesn’t need to dictate your life forever. Be informed, ask for help and speak to the experts for advice so that you know exactly what you’re dealing with.”

“When I look at ‘before’ and ‘after’ photographs of woman who have had their surgery, I do feel scared about how I will view my body post-surgery. But I felt self-conscious about my body after having my two children! The more I speak to women through the Pink Hope community and realise other women feel the same way the better I feel about myself. I don’t feel as alone. I know that I’ll be okay. That I’ll be confident again.”

“If you’ve been diagnosed with BRCA don’t be scared. Be confident. Find out exactly what you’re dealing with so that you can do everything you can to deal with it. By asking questions and connecting with others in the same situation you’re taking control of your future.”