My name is Louise and this is my story.
I was first diagnosed with breast cancer in 2003, at the age of 35. I had a mastectomy but during the surgery had an anaphylactic reaction to one of the medicines and ended up in ICU! After 2 litres of blood were transfused and they fixed me up, I then waited another 4 months for my TRAM reconstruction (my choice). The surgery this time went well and after various revisionary surgeries I finally felt complete again.
I didn’t have chemotherapy or radiation this time as my cancer was 9cm of DCIS and not invasive. The lymph nodes were also clear. There was also no mention of Tamoxifen or other hormone-type drugs at this stage.
Fast forward 7 years and in 2010 at the age of 42, I was diagnosed with a second primary tumour in my other breast! This time it was invasive ductal carcinoma. I had another mastectomy (this time without drama!!) and an immediate lat dorsi reconstruction. I had chemo and am now taking Tamoxifen…..5 years down and the oncologist wants me to stay on it for another 5 years.
My family history is a bit blurry. My maternal grandmother died of breast cancer at the age of 66, but my mum was an only child so we didn’t have any other relatives on that side that we knew of with breast cancer. My dad has low-grade prostate cancer and one of my cousins on my dad’s side was also diagnosed with breast cancer at a young age. Another cousin on that side had 6 different types of tumours in her thyroid! We have also since found out that my paternal great-grandmother had breast cancer at some point (although we don’t think that it was that that killed her).
I was initially tested for BRCA1/BRCA2 gene mutations back in 2011, but my results came back inconclusive. Recently my mum was diagnosed with triple negative breast cancer at the age of 70. She had never had any problems before now. Due to her diagnosis and my age when first diagnosed, they decided to re-test my sample for a different gene panel. This time I got a positive result for the PALB2 gene mutation.
It seems that there is not a lot of information about PALB2 yet…..not many studies have been done.
However, we do know that it predisposes me to an increased risk of breast cancer and possibly pancreatic cancer (great!). The risk of breast cancer is about 58% to age 70, but I’m not sure about the increased risk of pancreatic cancer. They say an elevated risk but don’t give percentages.
As I have had two mastectomies, there is little that I can do to further decrease my risk of recurrence. My two sons may get tested in the future to see if they carry the gene mutation (it increases the risk of male breast cancer too) and my sister will definitely be tested soon (and probably her two daughters once they turn 18). Mum and Dad will also be tested at some point to figure out which side of the family it has come from.
It is daunting to get this result. In a way it makes be happy that it is nothing that I have done to cause me to have breast cancer twice (let’s face it, we all blame ourselves no matter how stupid that seems). However I also now feel guilty that I may have passed this to my boys which may impact their lives and also their future children’s lives. I know I can’t think like that though as I would not have not had children, even if I had known about it before they were born. And there is only a 50% chance that I have passed it to them.
Fingers crossed for an unknown future for all of us!