Genetic Counselling - What are others experiences?

I had mine a few weeks ago, pretty much as your oncologist said, a run through of family history, what the implications are for other family members, briefly touched on insurance as well.  They went through what they screen for, not just BRCA 1/2 and what my plans would be if the results indicated a mutation.  I also did my blood test at the end and was advised it may take a few months for the results but I should have them before surgery in May.

I wantes to know my risks of ovarian cancer. I'd already had a bilateral mastectomy due to my risk factors and my hidden tumour in a mammogram 5 weeks before findibg a lump. I had multiple family members on my fathers side who had breast and / or ovarian cancer and carried BRAC1 gene mutation and many had passed away. If my father had the gene I had a 50% chance of inheritance. He was deceased so myself and all siblings were tested and none of us found it. How happy were we.

However my half sister. ..diff Dad died from bc and her daughter also had it. No gene found. So at least our family is mapped and as new gene's found  we will keep getting tested.  

So I've not had my ovaries and tubes out. But I was ready to go if I was positive as ovarian cancer is hard to detect until advanced. I'm already through menopause so no other benefit at this time for surgery. 

Hi there love I had the genetic test at the  royal Brisbane as I was under 50 with no family history and had triple negative breast cancer. It took 6 months to get a consult at the Royal and discussed family history as other cancers can be linked to the gene such as bowel apparently. I had to have the test through the hospital system and It took 6 weeks to get the results back and they were negative. I had the test as both my parents have already passed away and because I was negative they said my kids won’t have to have the test either (I have one boy and one girl) had I been positive though I would of definately had my ovaries out. I’d already had a hysterectomy at 40 as a prophylaxis as my mum died from endometrial cancer (no link to bc apparently either) so my “oven was no longer in use” anyway as you know I had the double mastectomy already.  They also said my daughter is at increased risk as I’ve had it but not high risk as I didn’t have the gene and neither would she. She is 21 and they said she wouldn’t need to start getting mammograms and ultrasounds until 40 but I can tell you she Will be at least having ultrasounds sooner rather than later. Lucky for her she’s not like me and doesn’t have lumpy cysty boobs or did have to worry about. Hope this helps. Margie. Xx 

I had genetic testing,cost 600 $ last year before it became a free test. My adult daughter wanted me to have the test due to my maternal grandmother and mother then me being diagnosed . She wanted to make informed choices as did I , particularly due to increased risk of ovarian cancer to depending on whether i had the Braca gene and her increased risk if I had the gene.  Turns out that I don’t have the gene although they think that there is something genetic happening given the family history.  There is no doubt all this testing effects insurance as they need to be disclosed on insurance applications.My daughter is already effected because she has had mammogram at 36 and will have to disclose when she tries to increase her income protection. The insurer will no doubt ask questions or exclude Bc from her policy. 

Mine was funded too by the govt by the way @SamJgS xx

@SamJgS I would have thought that they'd suggest mastectomy before ovaries. I had Genetic testing in 2016 after I finished chemo due to having a recurrence at the 4yr mark and they cannot explain it when I had aggressive treatment. I only have my Mum who had BC at 40 and no other family history so eventhough I had a recurrence in cost me $800 not rebateable grrrrr!!! disgusting!!! They also explained that they test for BRCA 1 & 2, but there are other mutations linked to BC that they dont as its so complex :/ so mine came back negative. Their recommendation was the same as my thoughts which was a single mastectomy not a double, as they explained they are 2 different things and risk is no different to the normal population. Good news too is my daughter is only like 1% more than the normal population of risk. I needed this testing to support the pending decision by my Surgeon. I did the mastectomy/diep flap immediate recon in 2017, of course preventative and so pathology was normal eeeeh thats hard. Sorry I was ER+ x M

@SamJgS I have PM'd you what they sent me.

Three weeks after my diagnosis, my younger sister was also diagnosed, so the genetic counselling and testing became more urgent as I still was to have my surgery. Getting an appointment for counselling was through the oncologist who had to ask for an early appointment as counsellor was booked up for a few months. Full family history (not startling until the above) and discussion about implications of positive findings for us as individuals and for the family. Only my sister would have qualified for free BRCA testing as you have to meet a threshold that includes age and type of tumour (we had different ones!). Decided to  both pay for Color  saliva testing as it tested for 30 cancer causing genes not only breast but others, (about 400 dollars each) and results within less than a month from the US. Fortunately no genes found of relevance.  Was told that if positive, next step would have been to test our parents wrt to which side of the family as it has relevance for extended family and for males and females. All the best. 

Just an update had my gene testing.  All negative.  Not really sure how to feel about that.

@SamJgS I'm glad that you have had it done now, it is an interesting one I agree. I think there is more that come back negative than positive as the nature of Breast Cancer is that majority of it is random and not genetic. I think it's good news! as it gives a more definitive direction based on the outcome of this. xx