As mothers, we have a strong biological urge to protect our offspring. To protect them and keep them safe from harm. That urge starts at their birth and continues as they grow from vulnerable new-born’s, through their toddler years, teens and even into adulthood.  

However, when the dangers are hidden and blissfully unknown, it becomes impossible to remain their protector.   

The hidden danger lurking in our family is a mutated gene (BRCA2).  I have inherited this faulty gene from my mother and now I have the agonising knowledge that I may have passed it down to my own children.  

Out of every 100 women who have a faulty BRCA2 gene, 40 to 85 of these will develop breast cancer in their lifetime. Between 10 and 27 women will develop ovarian cancer (NHS website).  Men with BRCA2 mutation are at increased risk of breast cancer and prostate cancer. There is also an increased risk of several other cancers including pancreatic and melanoma. 

I was always aware of my strong family history of breast cancer. My maternal granny died of metastatic breast cancer (MBC) at the age of 60. I had been told that her mother before her had also died of Stage 4 breast cancer. At the age of only 40, my mother had her first primary breast cancer. She would go on to have two further primary recurrences, with treatments including double mastectomy, radiotherapy, and years of Tamoxifen. My sisters and I grew up with my mum’s flat mastectomy being the norm, but also worried that she would die soon. (My mum died at good age of 80, having had three primary breast cancers, but never developing metastasise). 

Mum was tested around 20 years ago to see if she had the mutated BRCA1 gene, this was the only one known at the time and she tested negative. However, we had a strong suspicion that there must be a hereditary element to the family’s breast cancer, and we grew up with the fear that we would be next.   

Fast forward to 2019, my youngest sister (then aged 45) was diagnosed with breast cancer in November of that year. I followed closely (aged 54), having found a lump in my left breast that December. Our initial treatment was the same. We had mastectomies, PICC line procedures, EC chemotherapy. My treatments were all a mere six weeks behind my sister’s. I tell her that she was my guinea pig…she was a few weeks ahead of me throughout and would try and prepare me for what was to come. 

I was to discover in March 2020 that my breast cancer had spread to my spine and “suspicious” nodules in my lung pleura. My oncologist’s exact words were “Your treatment is no longer considered curative but is palliative.”   

Although I went through all the emotions of shock, dread, disbelief, and fear for my future, my thoughts turned instinctively to my children. And thus, the feelings of guilt began …. Could my children also have to go through this in the future?  

There was a 50 per cent chance for each of my three children that they would have inherited my faulty gene.  The decision to be tested rested completely with them, but I do hope that eventually they will all be able to find the courage to find out (one of my daughters has tested and is thankfully negative).  

I wish that I too had known about my faulty gene several years ago.  I had been having annual mammograms from the age of 35 because of the strong family history, until the age of 50, when I was told that I was now going to have them every three years in line with NHS guidelines. My mammogram in early 2018 was clear but I was then not due another until 2021. I often wonder if I would have had a different outcome if I had been allowed to continue having yearly checks.  

The options for people diagnosed with BRCA2 can be to have preventative surgery (mastectomies, oophorectomy), increased surveillance (regular MRI or mammograms, PSA blood tests for men), or preventative medication.  Of course, for my sister and me, our biggest wish is that we have not passed our faulty gene to any of our children and therefore also not on to my grandson.  

I already felt an enormous sense of guilt when I received my metastatic diagnosis. I felt guilty for just having cancer at all. My two stepdaughters had lost their mother to cancer a few years previously, so along with my cancer, and my husband’s prostate cancer, I felt terrible that we were causing more pain to all of our children.  Guilt that I might not be there for their future life events, guilt that I might not be here to be a grandmother to their children, guilt just for upsetting them!   

Now I live with the added guilt that I may have unwittingly passed on a timebomb, one that I cannot control and one that I cannot protect them against. I never had a conversation with my mum about how she felt, she kept her emotions very much to herself, but I should imagine she felt just as guilty seeing two of her three daughters suffer and I am sad that she had to see us going through the same brutal treatments that she had endured. Oh, and there is also my guilt for having breast cancer and making my mum feel guilty! 

However, I cling on to the hope that there will be better treatment options for the future, better outcomes, and that, in my children’s lifetime, metastatic cancer may become a chronic disease, rather than a terminal diagnosis.    

Until then I live with the guilt, but with hope for their future.