I was diagnosed in August 07 at the age of 43, my mother two years previously at 66, I have been referred to Genetics Clinic and they have taken family history etc, my Mother - in - Law and her Sister also had BC aged 36 and 65 although from what I understand it can only be passed on from one family and not both. My daughter who is 22 is obviously concerned and that is why we were referred to the clinic. All the cancer registries have been looked at and types by the Geneticist and we have been told by the Genetic Nurse they are unwilling to test to see if I am carrying the faulty genes but will offer my Daughter mammograms when she gets to 30. I am appalled at their decision and need to make a case when I see them in two weeks time for a further consultation, if anyone could offer any advice as to how we can make them change their minds over the testing. I realise this is a cost saving exercise but I don’t understand why some PCT’s do the testing and others don’t.
My daughter should not have to spend the next 30 years + waiting to see if she will get BC all for the sake of living in the wrong area and a budget controlling PCT.
I am currently awaiting results of a genetis test (am 35,diagnosed at 34)and live in Hampshire. My paternal grandmother, her mother and her first cousin all died from the disease young. If you carry the gene there is a 50% chance that your children will also have the gene.I also know (although cant quote or remember where I knew this from) that 80% of genetic carriers are triple negative (which I am).
From what you have said, if you don’t carry the gene, then it sounds like your daughter could still be at risk from her fathers side-although they told me that they would only carry the test out on somebody who already had cancer as my sister went to be tested first and was sent away- they had to test me.
I would contact your breast nurse and see if there is any way you can insist on a test- there must be something they can do to put your mind at rest as clearly you have family history.
Good Luck
Katyx
Hi Clare, this seems very unfair. I’m awaiting my results very soon. I also have a daughter. My paternal grandmother had ovarian cancer in her late 60’s and her sister died of breast cancer, not sure of her exact age but she was an elderly lady. Whilst I’m waiting for my results my sister has been offered yearly mammograms (she’s 46) and we have both been offered ovarian screening.
If I do have the gene my daughter, my sister, my brother and finally my father will be offered the test.
Good Luck.
x
I was told when I went for genetic counselling that they will only carry out the test if people were pre-menopausal at the time of their diagnosis (I was, so was my mum and her sister) so that may be why you’ve had problems Clare but I think it’s definitely worth trying to follow it up.
I know that it’s only a small amount of women who have genetic breast cancer but it doesn’t help all those other people who have a family history. There’s only a link between breast, ovarian and prostate and, as you say Clare, it won’t affect you the history on your mother-in-law’s side but it may do for your daughter.
I think they have a points system on who they offer a test to and if you score below it they won’t carry one out. Have you thought about having a private one done? I don’t know how much this would cost but I’m currently waiting for my results which will take anything from 6months to a year to find out.