Brca1 how many ???

would like to know how many people that have the brca1 get any kind of councilling offered to them?...i live in cambridge and found out i had the brca1 in 2008 and was offered no real advice all they told me was we will test your children when they reach there mid 20s well that was too late for my jasmine.have looked for groups and websites on the internet all i could find was an american website if anyone knows of any in england would like to know,personally i think there needs to be more done so people like my jasmine have a fighting chance...would love to hear what other brca1 carriers feel on this matter..julie xx

3 Replies

oldestnewest
  • I know of nothing...You probably have thought of this already, but have you tried Macmillan. Maybe there's a need for a brca1 branch of Ovacome to get started.

  • I have a BRCA 1 gene mutation.

    When I asked my oncologist if I could have the genetic test he discouraged it, I think, because with 2 aunties affected by cancer (one ovarian cancer and one with breast cancer) I didn't fit the profile of someone who may have a family gene mutation. They look for first degree relatives with cancer.

    So I took an alternative route and asked my GP to refer me to my local family history clinic. I have had lots of support from this clinic both before the test, (in terms of what it may mean to me and my family) and after the result too.

    I am now in a position where I have access to a drug trial aimed at gene mutation carriers. I wouldn't have this chance if I hadn't pursued this test independent of my consultant.

    I wish you and Jasmine well Julie I can't imagine the heartache of watching your daughter deal with this awful disease. I have 2 sons who understand the position they have as potential carriers of the mutation. They are both in their early 20's and are considering getting their genetic study done when they are in a position to start their own family.

    I inherited my gene mutation through my dad and he has spoken of the guilt he feels about this but we have dealt with that as a family. People deal with this information in all sorts of ways. I have 2 female cousins who I encouraged to get tested and they don't want to know, both of them are of an age where they are no longer having children and could get a prohphylactic hysterectomy to reduce their risk - I wish I had been given that option as I would have taken it. Hindsight is a marvellous thing though I guess.

    Take care

    Debi

    X

  • I would also like to see more information being shared about BRCA mutations. I myself am a carrier of a BRCA2 gene mutation. I had breast cancer in my 30s and ovarian cancer in my 40s. I attend an annual screening at St Georges Hospital in London in July each year. All the other ladies who attend are keen to talk when they attend and are usually considering or have undergone preventative surgery. There is usually an opportunity to talk to a counsellor. Perhaps you may ask to be referred to Professor Shirley Hodgson at St George's hospital.

You may also like...