Today after waiting two months I finally received my Genetic test results and was glad I was sitting down. After being diagnosed last October a day before my 40th Birthday with HER 2 positive Breast Cancer and a history of mum having Breast Cancer 20 years ago at 42, and her mum having Breast Cancer about 20 years ago in her 60's and the being rediagnosed last November in her other breast, my results are BRACA 1 and 2 negative with no other mutations showing either. 3 generations of Breast Cancer and no explation for it. How is that possible?For me though, I'll still be having a prophylactic mastectomy of the other side next year and am strongly considering having my ovaries removed even though they said I don't need too. Mel xx

Mel, thats great news it came back negative!! yay!!! Strangely it's very possible, as 95% of BC is random. I don't get how it works, with a history like you have, you would think. Mine was also negative with only my Mum though diagnosed at 40, she passed away at 66. I have no other relatives but I had to do the Genetic Testing as mine was a recurrence, so I was headed for a Mastectomy and this information would have been important for a single or double. The Genetic Counselors said based on my results a single was only warranted. So I had a single mastectomy with Diep Flap Reconstruction in February. Toughest decision of my life to do it, but happy with how I proceeded. So you too know what you want to do which youre half way there, so all the best with your next step. Hugs Melinda xo

It is good news. I was neg too. But the wording in my letter is that I may have an as yet unidentified gene and all my sisters should be closely screened. Each time a new one identified they can recheck. Time to celebrate.

mine also came back neg or inconclusive thinking its a gene not yet discovered. mum was 37 died 48, I was dx at 28. I am the eldest of 4 girls, thankfully none of my sisters have had bc

I'm waiting on results of gene testing which I undertook mostly at the request of my 37 year old daughter . I was diagnosed at 61 , mum same time as me when she was 81 and her mum died at 41 from bc. So my daughter is justifiably concerned. The genetic counsellor advised there was a less than 1 % chance that I have the mutation based on stats. As much as I was happy about the low % it meant I had to pay 600$ for the test as it was apparently only govt funded if there was a 10% risk or more. What surprised me was the advice that if I have the mutation there is an increased risk of ovarian cancer and surgery would be recommended.

Yes mine cost $800 which was shitty! As i had a recurrence that to me should put me up in criteria but it doesn't. ..stupid! Yes seems standard actually if i had the mutation it would have been a double and ovaries out. Funny i could careless bout my ovaries lol my breasts way harder to come to terms with. I never thought I would or could but now recovered feel great! Love the diep flap because its all me. X

Genetic Tesults | BCNA Online Network

13 Replies

onemargie
Member
8 years ago
hi there i had the genetic test as I was under 50 with no family history came back negative Ive had both boobs off though - my choice (bc in the left). Its a really personal decision and Im happy with mine, on the waiting list at RBWH brisbane for another 2 1/2 years for reconstruction. Margie
KimW
Member
8 years ago
I went to the Austin Repat for genetic results but we were told that we carry a gene that hasn't yet been identified due to my age at dx28 and my mum was dx37 and died 48. I do however carry a fault with my dystrophin gene as does my 10yr old daughter which is how I found out I'm a carrier. My daughter has Duchenne's Muscular Dystrophy with language disorder expressive and receptive, shoulder girdler weakness and hip flexor weakness, fatigue and poor balance. I only have one symptom muscle wastage on one leg due to knee surgery when I was 13 oh the things genetics can tell us these days is darn amazing. My daughter is at risk of cardiomyopathy as am I so we both routine have our hearts checked.
fairydust
Member
8 years ago
I went to Peter Mac in Melbourne for testing. As my father had breast cancer I did not have to pay. I have the bracken 2 gene . My two sons and daughter were tested. My daughter also has the gene. My sons dont. My sister was tested she does not have the gene.
My daughter and I were strongly recommended to remove ovaries. My daughter has decided not to have a double mastectomy but rather constant checks. It has been a really stressful time in our lives.
My father survived breast cancer but is not alive today.
My mother would you believe will be 101 in September.
Go figure????
Tanba
Member
8 years ago
I went over to the crown princess mary cancer center in westmead when I got my TNBC diagnosed. Was all covered under medicare, I dont have brca1 or 2!
melclarity
Member
8 years ago
I was sent to Familial Cancer Centre at royal melbourne. There are no options thats odd...mine was $800 unless i met the government criteria only then is it free as far as i know. X
Cyclo
Member
8 years ago
Not sure what QML is? I wasn't given options . I was referred by the oncologist and had testing at private hospital .
BoraBora
Member
8 years ago
@cyclo & @melclarity did you use QML etc to take blood for testing? My local hospital uses QML and said it would be $600 but if I went to a different hospital (which I did) it would be free.
Melsie97
Member
8 years ago
I am so grateful it's negative not only for my two boys but for my sister and brother and all their children.
@Cyclo im surprised you had to pay based on your family history.
I'll have to ask if they will be retesting mine too when they find new mutations.
melclarity
Member
8 years ago
Yes mine cost $800 which was shitty! As i had a recurrence that to me should put me up in criteria but it doesn't. ..stupid! Yes seems standard actually if i had the mutation it would have been a double and ovaries out. Funny i could careless bout my ovaries lol my breasts way harder to come to terms with. I never thought I would or could but now recovered feel great! Love the diep flap because its all me. X
Cyclo
Member
8 years ago
I'm waiting on results of gene testing which I undertook mostly at the request of my 37 year old daughter . I was diagnosed at 61 , mum same time as me when she was 81 and her mum died at 41 from bc. So my daughter is justifiably concerned. The genetic counsellor advised there was a less than 1 % chance that I have the mutation based on stats. As much as I was happy about the low % it meant I had to pay 600$ for the test as it was apparently only govt funded if there was a 10% risk or more. What surprised me was the advice that if I have the mutation there is an increased risk of ovarian cancer and surgery would be recommended.