Ameena had long suspected that the many cases of cancer in her family, including her own, were linked to a hereditary cause. Here she tells her story of uncovering her family's inherited risk.
For years, our family had been plagued by cancer, and we often wondered whether genetics played a role. Despite our concerns, we were dismissed and categorised as low-risk.
My personal journey began in 2017 when I received my own breast cancer diagnosis. Curiosity and a deep-seated concern about the similarities between my cancer and my mother's breast cancer diagnosis from the year before prompted me to inquire about the role of genetics. I diligently filled out the requisite forms, yet my concerns were met with silence.
In 2018, my father received a diagnosis of stomach cancer. It was during this challenging period that he agreed to participate in the 100,000 Genomes Project, a pivotal decision. Tragically, my father passed away in July 2019.
It was not until November 2022 that, through this project, it was found that my father had indeed carried a faulty BRCA2 gene. Subsequently, they offered to conduct genetic testing for all of my father's children. My second cousin, Muna, succumbed to cancer, having tested positive for the BRCA2 gene fault, and we began to grasp the significance of genetics in our family's battle with cancer.
Prior to these revelations, my sister Saba had expressed concerns about her breast health and the possibility of inheriting a faulty gene. She was dismissed as low-risk, despite her worries and the fact that her identical twin sister had battled breast cancer.
Upon receiving the genetic test results, we found out that four out of my father's six children, including me, had tested positive for the faulty gene.
Of the other two, one chose not to know, and the other tested negative. We embarked on a journey of monitoring, involving annual mammograms and MRI scans.
My sister Saba, unfortunately, was not spared breast cancer, leaving us deeply frustrated by the previous dismissal of our concerns. She underwent a double mastectomy and now awaits her next steps.
I, too, opted for preventative surgery, having my ovaries removed, and I have plans for a mastectomy in the near future, which I've momentarily postponed to support Saba through her own battle.
While I'm grateful to my father for participating in the trial that unveiled our family's genetic risk, it has taken a significant toll on my mental well-being.
I often feel like a ticking time bomb, aware of the looming threat within my genes.
My primary concern now is ensuring that my adult children undergo genetic testing, as knowledge is a powerful tool that offers them a fighting chance, unlike the one we were initially denied. We hope that they will receive better attention and monitoring than we ever did.
Currently, my daughter eagerly awaits her test results. As a mother, it pains me to have placed her in this uncertain position, and I pray for a negative test result. Meanwhile, my sons, more laid-back in their approach, have yet to pursue their own tests.
The experience has illuminated the importance of raising awareness about the link between genetics and cancer, and the need for candid discussions regarding family history.
Life, as we now know, is extraordinarily precious and should never be taken for granted.
If I could convey a message to the doctors who previously brushed us off and the rigid criteria that failed us, it would be to change, listen to your patients, and acknowledge that genetics may hold the key to understanding their health risks.
Ameena founded the support group “Let’s Talk Hope” in memory of her father Saleh Ahmed Muflihi.
Let’s Talk Hope provides support to people who have had cancer, as well as their families & friends, in a relaxed & friendly atmosphere. The group meets in Smethwick and West Bromwich in the West Midlands and has a facebook group which can be found here.
To learn more about BRCA gene faults visit our Hereditary Hub.