Genetic Testing

I had the genetic test as I was under 50 and had no family history I was negative but I can’t remember  how many genes they tested for though. Margie.  Xx

Hi Pahill. My mother had breast cancer at my age (51) and survived, my sister was diagnosed at 44 and didn't survive. I don't know if she paid for it or not, but my sister had genetic testing done three years before my diagnosis. It was negative for the tested genes (three, out of a possible nine I think). Since then, no new tests have been developed so there was no point in my doing it.

My breast surgeon sent my details to the Peter MacCallum Familial Cancer Centre and free of charge, I had a long phone conversation with the genetic counsellor. She then sent me a four page report. She'd had a look at my sister's results and the information she sent me was detailed and particular. It included amongst other things risk management information, advice about the pill & HRT, and risk factors for me, my remaining sister, and my daughter and niece.

For all those thinking about getting the information in reference to their relations, the report gives lots of guidance about what you should do. For example, my report said my sister has to have her GP check her breasts every six months and have yearly mammograms. There was information about how she could take Tamoxifen (which she refuses to do) or consider a prophylactic mastectomy, which she is thinking about. My daughter and niece have to start surveillance at 30.

Attached below is one of paragraphs in my report, which I found fascinating.

I hope this information has been useful. Good luck with your decision. Let us know what happens! K xox

I don't know why it was free for me as I was 56 but glad I had it done as I have a daughter. 

@melclarity yes it should be free to anybody diagnosed!

@kmakm haha I had to look up draconian and yes brutal! It’s the Manchester score, if you score 18 I think it’s free, I scored 17 (If I was diagnosed at 30 - 3 months earlier - I would have scored 18) but luckily they changed the law the month before I was tested so I got it for free

Hmmm yes its pretty brutal?! I'm glad its free to under 35, so it should be, but really with a 1st degree relative and then having had a recurrence surely thats enough grrrr. Main thing it was negative, but still I was furious to have to pay!!!

@JoeyLiz I don't know what it's called!

@melclarity They now offer it free to any breast cancer patient under 35 years 

@melclarity It's a draconian points system  :#

@Glemmis oh Wow! honestly have never heard of it being so easily accessible. Gee I had to get a referral and then was out of pocket nearly $1,000. Crazy!!! especially when I had my Mum who had BC and I had it twice??!!! but I still had to pay!! :/

I was referred to a genetic specialist and had to fill in an extensive history of siblings, parents and their history. It took some time as I am 1 of 10. My Dad was 1 of 9....and many many people gene positive. The idea of the pre counselling is discussing risks beforehand... otherwise getting the result is like being hit with a cancer diagnosis. My family had a known positive gene...but they were in Scotland so the team were able to contact them beforehand so they knew where on the gene it was faulty. By doing the tree also means as further positive people turn up we have a clearer picture if it is a genetic bc.
I believe they often do offer very young tnbc ladies testing. The thing is ...it is more tban just brac1 and 2 that cause bc. It can be from at least another 3 other gene mutations. That's why best handled by the experts. They also connect  you with appropriate people if needed if positive. Like a onco-gynacologist. I had already made the decision for further surgery if I was positive. However as I wasn't, it wasn't necessary. Some faulty genes only cause bc but not ovarian...which is helpful information to know.  My siblings with yhe same father were all tested to see if we carried the faulty Scottish gene. Fortunately none of us did...which was a huge relief.