genetic testing

Hi, don't know how to feel at the moment, I had a genetic test done to see if I was positive or negative to the BRCA gene and it has come back as Variant of Unknown Significance (VUS), which I think basically means the results are unclear. She told me that wait a couple of years and then redo the test to see if I get a better result but I have to explain this now to my daughter, so do I get her tested (she is 35 and has a young son and daughter) or just wait and see what eventuates, I'm feeling pretty stressed.

Tagged:
Karen

Comments

  • Hi kdumke,

    What a stressful time you are having. 😔 Can I ask, did you speak to a genetics counselor before and after having the test done? If not, I strongly recommend getting a referral to one ASAP. If you have spoken to one, would it be possible to arrange another meeting with them and have them explain the situation to your daughter? If there was enough reason for you to be tested, they may recommend that your daughter be tested now. At least that way you will know for certain if she has the same VUS and will give her the opportunity to monitor for symptoms more closely.

    I'm sorry I can't be of more help. I have been down the genetic testing rabbit hole and its a very daunting time.

    Take care of you!

    Karen xx

    kdumke
  • Hi Karen, thank you so much for replying to my post, I haven't spoken to a genetics counsellor as I didn't even know there was such a thing, so thank you for letting me know, I will definitely look into that, when they rang me back with my results she asked me how I felt, I didn't know what to say as I honestly thought it would come back negative as there is not cancer in my family ,I'm the the only one as far as my family knows that has had cancer, unfortunately I've also had Melanoma so maybe it starts with me. Once again thank you for your comment, It is more helpful than you know, please take care

    Karen
  • Hi kdumke,

    Your GP will be able to refer you to a genetics service. It's interesting you mention that you had melanoma and I am assuming that as you are on this forum, that you have had an ovarian diagnosis... Did they just test for BRCA? The reason I ask, is because there are other POSSIBLE gene mutations that you may have, that may have increased your chances of the malignancies you've experienced. (Keep in mind, I am not a medical professional and am responding purely from my own experience.) I shared my story around genetics earlier in the week. You can find it here: https://forum.ovariancancer.net.au/discussion/17039/genetic-predispositions-to-developing-an-ovarian-malignancy.

    Please feel free to private message me if you want to chat more.

    Take Care

    Karen

    kdumke
  • Hi kdumke,

    I would suggest asking for a referral to a Familial Cancer Centre and having genetic counselling and testing done. You can also go with your daughter and talk about her risks as well. Please call the Helpline on 1300 660 334 for further information about a centre near you.

    kdumke
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