Debbie's Story

I was shocked to find two lumps in my breast in December 2008. I immediately went to my GP and then everything happened so fast. I went to the Breast Care Clinic on the Monday and was in hospital having a mastectomy the following Thursday. In the lab they found three tumours all stage 3, all with different characteristics. The third one hadn't shown on a mammography or ultrasound. I went through the regime of chemotherapy and radiation treatments and now I'm left with Lymphoedema in my arm and hand.

As far as I was aware at that time, there was no history of any cancer on either side of my family.
Due to my age (44, at the time) and the fact that there were three different tumours and one was a "basal phenotype" my Oncologist recommended a genetics referral. Mum and I went to the meeting and were told that with my history (I have a first cousin diagnosed with breast cancer nine years ago, at age 40, her mother died in car accident aged 32, they probably had enough evidence for testing but wanted more history on Dad's side of the family.  Dad didn't know much about his family history, he didn't even know his grandparents names, so that part of the journey (tracking the family tree) has been very interesting for us all.

I spoke to a few of Dad’s cousins and was shocked to find a branch of the family with the BRCA1 gene. When I phoned Genetic Services with that info they sent out the consent forms straight away! I was really devastated to get the news I had BRCA1. Even though I had had time to prepare, until you get the phone call, there is still a chance that you don't have it eh?

So it turns out that the mutation has been passed down to my Dad from his Dad, we haven't seen any breast or ovarian cancer in our branch of the family. The men have been very lucky not to have health problems - touch wood! Sadly one of my brothers (I have 2) has the mutation as does his daughter. She is in her early 20's and has some tough decisions to make.I worry, of course, that my boys will have the mutation, but I hope that when their time comes to face it they will have better options available to them than there are today.

I have been very lucky to have a lot of support from very special people in the form of my husband, family, friends and workmates. I have also come to know an amazing group of women and men through the internet. In January this year I had prophylactic surgery to remove my ovaries and tubes. I am booked in (1st July) for a contralateral mastectomy and double latissimus dorsi reconstruction. This is where they use the muscles on your back and implants to build new breasts. I'm starting to get nervous about that but have done lots of research and think I know what to expect.

I'm a firm believer in "what you think determines how you feel” and I know we are all able to change how we think, although it is not always easy and you have to have a meltdown sometimes! So I know I will get through this next step and be around to see my grandchildren grow up.

I was able to keep working through all my treatment and now I'm enjoying only working 20 hours per week. I enjoy walking, reading and researching, gardening and genealogy and spending quality time with people I care about.

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