Since starting this blog and especially since Angelina’s BRCA mutation and subsequent prophylactic mastectomy hit the news, there has been more interest from friends and family who might be considering being tested.
The process isn’t necessarily complicated, but there are things that I discovered along the way, that you might not read in a manual or that your Dr will tell you. With this in mind I thought it would be a good idea to outline what I did (and should have done) when I got tested for the BRCA mutation.
I will say that this is my experience and my experience in Australia (with a bit of the UK health service thrown in). This is not a definitive guide and I have listed reference points at the bottom of this article where you can go for more information. If any Aussies want to tell me their experiences I will continue to update this post to make sure it’s relevant.
Before you do anything, sort out your admin
Before you think about getting tested it’s worth sorting out certain things you may not have already and may need further down the road.
If you don’t have life insurance, it’s probably a good idea to sort that out before you get tested so a positive result isn’t taken into consideration when calculating your premiums, or working out whether or not they will insure you.
More important than this, GET DECENT HEALTH INSURANCE. I cannot stress this enough. I had some health insurance, which meant I was somewhat covered when it came to my operation. But my poor level of health insurance affected some of my decisions, including what hospital I could choose and what surgeons were available to me. Also, as a non-permanent Australian resident, as I am, you also need health insurance, otherwise you won’t be eligible for any rebate under the reciprocal Medicare agreement.
You need the health insurance before you get tested otherwise the BRCA mutation or any surgery resulting from a positive result will be seen as a predetermined condition and your insurance company may not cover you.
Know your family history
In order to qualify for testing, you will need to demonstrate why you might be eligible i.e. you have high incidence of cancer in your family. You will be asked this from the start and then time and time again if you do test positive and decide to undergo surgery.
Speak to your family members and find out who in your family has had cancer, what cancer they have had and what age they were diagnosed.
This quiz will help you determine whether you are at high risk, and shows you some of the questions your Drs will be asking to determine whether you are a candidate for testing. They include a family or personal history of breast cancer before the age of 50, incidence in two or more relatives, breast cancer in a male relative, cancer in both breasts or twice in the same breast, breast cancer and Ashkenazi or Eastern European Jewish ancestry and ovarian cancer at any age.
If you have not had cancer but think you may be at risk, find out if anyone in your family has tested positive for the mutation and request a copy of their pathology results.
If no one in your family has been tested, but you have surviving relatives who have had cancer, you may want to request that they get tested first. The reason for this is a little complicated but this extract explains why quite succinctly:
“Genetic testing for mutations in the ‘cancer protection’ genes is complex. First, the mutation has to be identified in a family member who has or had the cancer. This is called a mutation search and may take considerable time.
Second, and only if a mutation is found, other family members without cancer can be tested to determine if they have inherited the faulty gene. This is called predictive genetic testing (see Genetics Fact Sheet 21)”
My Dr explained it by saying, looking for a gene mutation is like looking for a needle in a haystack. But if someone gives you a map – in the form of your relative’s genetic mutation make-up – it makes it easier to determine an accurate result.
Speak to your Dr
To get the process in motion, I first went to my GP, explained my family history and that I wanted to talk to someone about testing. They referred me to the Hereditary Cancer Clinic in Randwick but your Dr will refer you to the best place for you.
Armed with my family history, my uncle’s pathology results and the name of the clinic where he was tested, the Drs at the Hereditary Cancer Clinic were able to put the wheels in motion.
Before you sign a piece of paper and give your blood to be tested, the clinic will ensure you have talked to a genetic counsellor. They aren’t like normal counsellor in any way shape or form. Their job is to ensure you have enough information about testing, what a positive result means for your risk, its implications and the options that are available if you do test positive.
Then when you are sure you sign a piece of paper and the testing process begins.
It takes about a month (if not less) to get the results. Mine was longer as they were getting my uncle’s blood from the UK and the NHS didn’t make this very easy for them.
Get some support
As a lot of you know I am a stubborn person who is determined to do everything by myself. Looking back I wish I’d sorted my support system a lot sooner. I have great friends, but you need people who get it. It didn’t help for me that I broke up with my boyfriend and got made redundant couple of days before I got my results.
Pink Hope are the Australian charity that helps women with both support and resources and I have met amazing people through them who told me things I needed to know, but would have never asked.
Other Facebook groups I’m a member of are called Previvors and the BRCA Sisterhood group. These are closed groups and you may have to explain why you are qualified to join. I would say, these groups are brilliant, but I am glad I didn’t join these particular groups until I was ready to have my preventative mastectomy. Culturally American groups are very different from Aussie and UK groups – we are a lot more conservative and less likely to share so honestly, or visually. This is brilliant for when you’re going into surgery, but at the BRCA testing stage I’m not sure how helpful it is to see women’s reconstructed breasts. The ‘freak-out’ potential is a little too much.
I started seeing someone professionally following my diagnosis. I only went a few times but I do think it was useful to help try to process everything.
Take someone with you and get them to drive you.
Despite having broken up with Mr F a couple of days before the test, he was the person I wanted to come with me. Go figure huh.
Just having someone there immediately after helps avoid those feelings of despair and the opportunity to overthink. We went and had a lot of wine and spoke about everything other than my new BRCA status and our relationship.
A positive result
Remember throughout all of this, you may not test positive. But if you do, it’s not a death sentence. You need to remember you don’t have cancer and chances are, you may not get it any time soon. Take your time deciding what you do next and like I said, lean on everyone you can for support.