Has anybody else been offered a test to identify another mutated gene?

Hi I have just been told that I do not have the mutated braca 1 or 2 gene, but the doctor who told me said that if I wanted to I could have another test which will be available in 6 months time, Does anybody know anything about this? I am not sure what to do. I am under the Birmingham Women's Hospital,

Luv Didy

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  • Hi Didy,

    You could give Ovacome helpline a ring they might shine some light on this and speak to Ruth Payne tel 0845 371 0554 she is always willing to help and give advice love x G x

  • Hi Didy,

    Yes, they are working on a braca 3 gene at this moment in time. I have the faulty braca one gene, but my cousin was tested and has neither - they have now offered her the testing for braca 3 in the new year.

    She doesn`t know what to do either, but like I say to her at least if you are aware then you can have more frequent testing or prevention surgery to avoid this god damn awful disease.

    There are lots of things to think about and we are all individual, some of us would rather not know, while others of us want to know all. I have always been the later one.

    You have come this far by being tested for the braca 1&2, so why leave it there? if there is a possibility that you could be carrying the faulty braca 3. Then personally I`d want to know.

    I`m sure you have already been through all the counselling pre-braca1&2 testing. To be tested for the 3 gene it`ll be no different than what you have already been through. Remember you have been through the worst part and that is taking that first step.

    All I can say Diddy is, IF I had been offered genetic tesing a few years ago, then I would NOT have been through the hellish past 2 years fighting OV cancer.

    I would have known about the gene and then I could have had preventative surgery. No one would listen to me, I was told that no surgeon would operate even if I paid privately in this country. I`m not sure if I was lied to or not, but I do feel done out of earlier testing just because I only had one family member with a cancer history as far as I am aware that is. My own mother died from OV cancer when I was 16 and there is no one left to ask questions. I have to say I was more shocked about the high risk of breast cancer. All I can do now is hope that the medical proffesion learnt something from my case.

    Both of my daughters have the faulty braca one gene and they are being closely watched until they become an age when they have finished with having babies. This has to be better than nothing at all.

    Also if you don`t run the mile and go for this you will still be wonderring have I? haven`t I? will I? won`t I? The worry will never leave you, it never did me!

    I hope this helps a little, please fell free to message me for a chat privately if you wish to do so, I`m sure you will have lots of quuestions.

    Take care and make the right decision for yourself

    Best of luck from Tina xxx

  • Hi Didy. I am also undergoing genetic testing but as you know it takes forever. They have not yet tested for braca 1/2 but are testing for Lynch syndrome first. Testing is still ongoing as initial report suggested further study was needed.

    I agree with Tina, you've come this far with the genetic testing ...why not go all the way if it will benefit those close to you.

    Good Luck with whatever you decide. Take care. xx

  • HI thank you for your words of encouragement. the test isn't available for another 6 months. I have had OC and am now in remission, but I had a Auntie and a Great Auntie who both died of OC. If I go ahead with this further test it is to protect my daughter and younger sister from going through what I did

    luv Didy

  • My thoughts too. Nine of my family have been tested, though we had a couple of Breast cancer cases in my mum and aunt they were both in their 60s and so doctor said it wasn't a huge indicator. Then my cousin, in her 40s got BC a couple of years back. Now I have OC and so my cousin is now doing the BRACA tests - we discussed it and decided both to do this not for us but for her daughter, who needs to know and have choices. So she has been given my waiver to see my meducal records.

  • That should read NONE of my family... Bloody ipad...j

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