genetic testing

hannon Member Posts: 1
edited March 2014 in Breast Cancer #1
this is my first time using a chat room, i am desperatly trying to find out how to have myself and my five year old tested for the breast cancer gene. I lost my mum at christmas and her older sister died a few years ago from the disease. Another sister has just had her second breast removed. I would like to find out if i have this gene or if my daughter has it. There seems to be little information on the subject in ireland. Any help would be greatly appreciated..


  • FresnoD
    FresnoD Member Posts: 12
    Hi, I am currently going through the testing process. I recently was diagnosed with extensive DCIS. I am waiting for approval from my insurance company and then I will have the test. The company that processes the test in the US is Myriad Genetic Laboratories. Their website is and their phone number is 1-800-469-7423. I am not sure whether you can call the number so that is why I also gave you the website. If you don't get anywhere there I would call the childrens hospital in your area and see if they have a genetics department. My testing is being done at our local childrens hospital. Let me know if this doesn't help. What I am afraid of is that they won't do it unless you have cancer. The test is very costly so if you have to pay it yourself it is $2,680 in US. Basically, they told me that I have a 50% chance that I have the gene if my Mom had it. She passed away from Ovarian cancer 2 years ago and never thought to be tested. If the test comes out negative for me then my daughter doesn't have to be tested because she won't have the gene if I don't have it. If you have the test and yours is negative then your daughter won't have to be tested. If yours is positive then your daughter has a 50% chance she has the gene. Good luck! Diane
  • caroll
    caroll Member Posts: 2
    It is possible to have gene testing in the UK. As my sister and I are both breast cancer patients my daughter, son and nephew wish to know if we have the gene. As far as I know some tissue from our tumours will be tested, (all tumours are kept for so long after they have been removed). It can take a long time for the results to come through. Your GP should be able to arrange it for you. You have to fill in a questionnaire with details of your family cancer history and I think the hospital then decide whether it is worth progressing. I will keep you posted on anything else that happens.
  • mcdermom
    mcdermom Member Posts: 7
    I am also new to the chat room. I have a 4 1/2 year old daughter and an 8 1/2 year old son. I was diagnosed with DCIS on my right breast 12/23/02, had bilateral mastectomies on 2/13/03, and also was diagnosed with ovarian cancer on 6/29/02. Mostly males were born in my family. Only member of my family that had cancer was my grandfather who died of prostate ca with brain mets. No history on my maternal side. On 1/16/03 (before my surgery) I had the BRCA1/BRCA 2 testing done through Myriad Genetic Testing Lab. I have Blue Care Network (a Blue Cross insurance product)and they denied all coverage for this test with the main reasons that it was a service out of their network and that I did not have enough first and second degree relatives to prove that I should have this test done. I am also a registered nurse that works in a case management department in a hospital. To date, I have had no contact with Myriad re my test results. As someone else pointed out, the test is expensive - about $2,700. I do not have the finances to put out that amount of money for the test. Wish I did. I'm really concerned re for my children's sake re inherited disease and am desperately trying to find a way to get the test results that are delayed secondary to payment for this test. Unfortunately, from what I've learned Myriad has a monopoly on being the only provider that can perform this test in the US. A genetic nurse that I met with before the test mentioned a Canadian company that may be starting to do similar testing but did not know the name of the company. I hope any of this information that I'm passing on to you is helpful. Good luck and please share info if you come across any.