To test or not to test.

was 1993, when I was 4 years old, my Aunty Annie (mum’s sister) was diagnosed with breast cancer (bc). I can remember my mum going into a different room with her to help change her dressings. Then they’d both come out and we would make little boxes out of old birthday cards.

She died in 2000, the week I started grade 6 at a brand new school. The funeral director just happened to be next door to my new school. As in the walls of the two buildings were literally touching. Mum told me not to be afraid of starting at this school because Aunty Annie was right next door. Sort of weird.. but at the time it was comforting.

In 2005, when I was 15 years old, my Aunty Maartje (mum’s other sister) was also diagnosed with breast cancer. She lived over in Holland and I’d only met her a few times in my life but seeing how upset mum was made me the most sad. Aunty Maartje was tested for the defective breast cancer gene. If she had it, then the bc was genetic and not the random kind. She tested positive for the BRCA1 gene mutation. It was genetic. The rest of the family could now be tested to find out if they would be at a higher risk of developing the nasty disease. Out of the 1 in 8 women that will eventually be diagnosed with bc, only 1 in 10 of these will have the genetic defect that causes the bc. Who in our family would have this gene?

Everyone with this gene in their family has a 50/50 chance of having it. My mum was to be tested as both her sisters had developed the cancer. If she did not test positive, then I would be safe. If she did, then I also had a 50/50 chance of having the BRCA1 gene mutation.

By this stage I was 16, my mum 56. My mum hadn’t got bc yet.. surely it meant that she didn’t have the gene? But she did. She would either be incredibly lucky and never get cancer, or she could develop it in the next few years. BRCA1 effects the breasts and ovaries. Mum had already had a complete oophrectomy and hysterectomy after I was born so she as pretty safe from ovarian cancer. However, she could still get bc.

My cousin organised for a bunch of us to attend an appointment with a genetic counsellor at the Women’s and Children’s Hospital. I was 16 and felt fairly overwhelmed at all the numbers and facts given to me that day. I was in no way ready to deal with this yet. Most of it went straight over my head and I thought, I don’t really want to know this anyway. I have a 50/50 chance, that’s enough to know right now and what can they even do anyway – nothing. I was too young for mammograms as ideally you are over 30 when your breast tissue isn’t as dense. And I wasn’t about to get a preventative mastectomy at only 16 when my breasts were only just developing. But I was so stubborn even if there were other things they could do, I wouldn’t have listened.

My two cousins tested very soon after the meeting. Both were negative for the gene. After that I knew I’d be positive.

Years went by. The subject was brought up occasionally. Everyone wanted to know why I wasn’t being tested..

“I don’t want to know”.
“What would they do anyway? I’m too young for a mammogram”.
“I don’t want the stress of knowing”.
“I wouldn’t do anything until after I had kids anyway”.

I thought I was informed and I truly thought it was easier to just not know.

My GP, literally every single appointment asked if I was ready for the test yet. No.

No.

No.

One day, when I was about 24, he suggested just talking to the genetic counsellor again. Finally I gave in. But as this was around the same time as Angelina Jolie had her mastectomy it was all of a sudden ‘cool’ and ‘brave’ to be tested and so the wait to see the genetic counsellor was long.

I saw the same lady as I did almost 9 years prior. She presented me with facts and options. Turns out a lot can change in almost a decade and I left from the appointment an hour later 100% sure I was going to do the test asap. I could have a free MRI yearly through the High Risk Clinic and a physical lump check 6 months in between. By being regularly checked, if I did develop cancer, it would be caught early and could be dealt with sooner. My reasons for not being tested sounded so stupid now.

My mum was stoked when I told her I’d do the test. I never knew she wanted me to do it so much, she never forced or nagged me. She just let me get there on my own. It’s a decision you have to be mentally and emotionally ready for, to be able to deal with the results.

A week later I had the test. A blood test. Easy. I had one, then an hour later, another. They do it twice as a double check, to be absolutely sure. I was told 4-8 weeks for the results! The weirdest and worst part was trying to prepare myself. I was telling myself that I wanted to be positive, to have the BRCA1 gene defect. I would test positive and that’s how I wanted it. Now, I realise that this was me protecting myself. I figured if I welcomed a positive result, it wouldn’t come as a shock nor be as upsetting.

BRCA1 gene:

87% risk of breast cancer over your life time.
Once you enter your 30’s, your risk of developing breast cancer becomes a 1 in 60 chance in the next 12 months.

Part 2 coming soon: The Results I realised this would be WAY too long to do in just the one post! The following post will also include our reasons for getting pregnant. Please leave a comment if you also have the BRCA1 or BRCA2 defected gene and how you feel/how you’ve managed.

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