gene testing
gene testing hi i am new to this and am trying to find out some information my mother died 13 years ago of breast cancer her sister also died of breast cancer, there mother also had cancer but died of something else before the cancer got her and i also have another 2 great aunties that are both fighting cancer, i have been told that i cannot be gene tested as my mother wasnt, and that all they can do for me is send me for mamograms every year for the rest of my life i have been going for mamograms now for 4 years and am just wondering if there is any other information out there i search always on the internet for infromation but get alot of different answers and i dont always see the same doctor at the hospital so never really come away satisfied that i have the correct answers to all my questions, any information would be greatly appericated espically about gene testing thank you and keep well and good luck to you all
Hi Red24 Welcome to the forum - I’m sure you’ll get some really useful information here.
Sorry to hear about your mum and aunts. I too have a very bad family history of breast and ovarian cancer and was diagnosed with breast cancer myself aged 35.
Just before I was diagnosed, an aunt with ovarian cancer had her blood tested for genetic disorders. They found the faulty BRCA1 gene and since then my cousins, my sister and I have been able to have the test done too. I think anyone in the family that actually has cancer can start the testing off - it didn’t have to be your mum.
Maybe the best place to start would be your GP? They could refer you to a genetic counsellor to find out more.
Good luck and let us know how you get on.
Love
Sue
x
have problem with family genetics testing have been told as there is a break in family i.e different dads between my mother and her sisters genetics testing cant be done have seen a genetics concellsor a few times, Was told without genes from my mother cant be tested so its jsut a waiting game i guess try not to think about it to much to be honest jsut go for regular mamograms etc. daughter got me thinking about it again really as she is 13 and developing very well and asked the other day if she would have to do the same as me ???. Have recently moved abroad but doctors her are very good have told them my history and they sent me straight for a mamogram and breast check iw as worried they mite not bother but are beening very good so at least i know all my tests will carry on.
Hi red,
even though there may be different paternal genes, they all share the same maternal genes, so I don’t understand why they wouldn’t do the test. I would ask for a second opinion definitely. They need someone who has been diagnosed with the breast cancer to have the test initially.
There was someone else who posted on here (I think) about samples from her mothers cancer which were kept after she died, and enabled her to have the test done.
I’ll check on that one for you.
Good luck
kind regards
Justine
x
Hi red, unable to find the info I put in the previous post, but hopefully someone will read this and remember who it was who posted it, and which hospital it was with.
Just to add to previous post, there are a lot of genes out there, and unfortunately in our family so far they have not identified the genes causing cancers in our family, so like you I have to rely on the professionals to do their job.
take care
Justine
x
hi
well my mother was not gene tested they informed me of this when i requested to be checking on after she had died the gene specilist and doctors looked into her records and no test or smaples were done so i guess its jsut a wait and see game and keep fingers corssed and jsut keep checking in between mamograms thanks anywyas for all your replys it is surpotive knowing they are lots of people out there to talk too and to keep us all reassured xxxxxxx
gene testing not always needed Hi Red24
Have you seen a genetics specialist? I ask because like you I have a strong family history of breast (and other) cancers, but no-one available for initial gene testing - so I was not able to determine whether I carry a mutation or not.
However, I was seen at my local genetics unit, who used the information about the cancers in my family that I had knowledge of to draw up a family tree; this was enough on its own for my risk of breast cancer to be calculated. As it was high (30-50%), I asked to be referred to a specialist centre for a second opinion and to discuss all the options re screening / prevention. I have now - at my own request - just had bilateral prophylactic mastectomies and LD flap reconstruction. I was treated by the team in Machester, who have a long established and very supportive practice in providing advice and support to women in ‘high risk’ situations.
Although the surgical route to prevention is not a choice for everyone, it was definitely what I wanted - t I was very distrustful of annual mammography (I had large and very ‘dense’ breasts which made getting good views difficult), and having had several lumps removed in the past added to difficulties in interpretation. It’s now nearly 4 weeks since surgery, and although still very tired and a little sore, I am certain that I made the right decision for me.
If you haven’t already had one, I would recommend to ask for a referral for genetics counselling, and see what they can do for you even without access to affected relatives’ samples. If Manchester is possible to get to, I can recommend the Team there.
With very best wishes for the outcome you want -
gene testing hi i am new too,infact to any chatroom.so please excuse me if i mess up.
My mother was diagnosed with brac2 at 39 and sadly died 3 yrs ago,i want to have gene testing, but thought it would be no problem, do i need my mothers blood or as she had the tests done and was confirmed brac2 pos would that do? Have a two little children and dont relish the idea of playing the waiting game! forwarned and all that!!! does any one have any idea?