Genetic testing

Hi Coddfish 

My situation is a bit different as I had hormone positive breast cancer and a family history (my mum and her aunt both died from breast cancer. Mum was under 50 at diagnosis and died age 53.) I had asked at diagnosis if there could be a genetic link but was told not, because of the cancer type. But at a follow up appointment with a different surgeon, I asked again and he agreed to refer me. These days they done just test for BRCA, I think my blood was tested for around 7 different genes. Turns out I do have a gene mutation- ATM - and my version of it carries a moderate risk of breast cancer and possibly other cancers. For me it was kind of a relief to know that it’s probably why I got cancer. But as you’ve said, the major down side is that I might have passed it on. For my particular mutation, extra screening wouldn’t start till age 40, so neither of my kids have chosen to get tested yet. One of my sisters has the gene too but is older than me and hasn’t had cancer. Her age is now a higher factor is terms of getting cancer, than the faulty gene. 
It’s definitely a tricky situation. I just wanted to know so I didn’t hesitate to get tested when it was on offer. The service was really good - although it took months, the counselling aspect was very helpful. I don’t regret it. It apparently wouldn’t have changed my treatment and although I’m at a higher risk of getting a second cancer on the other side, it doesn’t merit any surgery.
Hope that’s of some help. Love and hugs, HFxx 

Hi I was 65 when I was found to be a BRACA 2 carrier.  It was my sister who had been diagnosed with breast cancer that pushed for it.  She was 63 years old.  Knowledge is power and your children can decide if they want to be tested.

My older sister had died of Ovarian Cancer.

Of my 3 sons 2 are positive. They received counselling through the genetics team at Guy's hospital. We were open with them at the start that I wanted to be tested.  My father always said that people in his family died early.  We assume they were BRACA carriers.

What ever you decide there is not a right or wrong. All the very best

I have a brca1 mutation which was discovered after a tnbc diagnosis in 2021. I had two maternal aunts who had breast cancer (1 triple negative) and so I was convinced that it was a faulty gene from my mums side. The day my maternal aunt who had tnbc got a negative result came as a big shock and hit me like a brick wall. My mum got her results shortly after and also came back negative. To all our surprise, my dad was the carrier. 

My dad is an only child and has no known family history of cancer which often frustrates me as it makes it harder to make decisions on preventative surgeries when there is no family data. My older sister also has the gene mutation, but she never had cancer (and now has had preventative surgeries).

My view is that knowledge is power - it might be hard sometimes, but the more we know, the better we can prepare and protect ourselves. For instance, if you/your family did test positive, preventative surgeries or more frequent screenings could be offered as extra defence for the future. Equally, if you are not a carrier, it will be a relief to all of you. Being tested will not change whether you have it or not, it will not alter what your children think of you, but it can give you more insight and boost your strategy. Personally, I'm very glad that I found out about it.

I know that my dad finds it hard at times that he passed the genetic fault onto me and my sister but the simple fact is that had he known about it at the time and chose not to have children, we wouldn't be here. I would 1,000 times rather be here with a dodgy gene than not at all! I don't have children myself, but I would like to if it is possible. Knowing that I have a faulty gene doesn't really change that decision for me. 

I'm not sure if that helps any or if I have just waffled on, but anyway, I wish you best of luck with your dilemma and the road ahead xx