To test or not to test....

…hello, I thought I would try and get some other opinions since my GP hasn’t been too helpful so far. I’m 25 years old and my mother died aged 42 after being diagnosed with BC at 40. I went to my GP after being abroad for a year who said he would like me to go for genetic testing and was referred to St. Georges in Tooting. They responded by saying they would not test me as they only test people with a family diagnosis under the age of 40 and since my mother was 40, when told the news but not when investigations started I am not suitable. This is the only history of BC in my family to our knowledge but now my GP has put that seed in my mind, I don’t know whether I should follow it up/get it done privately. Nothing more has been said by my GP other than the clinic said now. Any opinions/experiences will be greatly appreciated.

hi libby,

i can imagine you are worrying now which is a shame. i have the faulty brca2 gene however there have been lots of cancer in my family unfortunately.im not sure wether to try and reassure you that perhaps with your mum it was a one off as i may be wrong. are you able to get a 2nd opinion? i know when i wet to my gp at 1st she was so unhelpful and convinced me i had nothing to worry about although i had a letter saying brca2 was in the family. i asked her to refer me and she sent genetics a letter playing everything down so much so that i initially recieved a questionaire where i had to put who had cancer and at what age and they would decide from that if they needed to see me… i called them and explained i had the letter and they said my doctor made a mistake and they saw me within 3 days…its not fair you are left to worry like this. x

Hi Libby,
well I have been trying to work out what to do for the best too and thought I would let you know you are not on your own with this predicament. I have BC and wondered whether to be tested for my 3 daughters’ sakes. I was not encouraged at all by my consultants, but eventually got to a genetics clinic with a BCN. She said that most cases are just random or from environmental and other factors, even when it looks like a lot. My girls are able to join the screening programme from 10 years before I got it but they have to refer themselves to their GP and it will depend if the same guidelines are in place to what they will be allowed to have. If they don’t take themselves they will not be called until they are 50!I tried to get on the screening programme myself as I was worried but they turned me down and I got BC 2 years later. A premonition maybe? The girls have decided they don’t want to know at the moment and if one goes, the others are obviously forced to know. I am assuming that you are ok and don’t have it? I hope that is the case. I guess that means you would get a yes to screening from age 30 if the same rules apply everywhere? You have to think about the consequences as it could affect any chance of private health insurance, loans, mortgages, etc. So if you were thinking of any of these types of things get them before you have any testing done, if you decide to go privately. I wish you luck with your decision and your future health and would be really interested to stay in touch if you take it further. meanwhile keep off all the nasties they say can possibly trigger it
Lily x

Hi Libby

BCC have published a booklet about breast cancer in families which you may find helpful to read, you can order or read it online via this link:

breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/70

For more support and information please call our helpline where you can speak to one of our specialist nurses about your concerns on 0808 800 6000, it’s open 9-5 weekdays and 9-2 Sat.

Best wishes
Lucy

hi im jude im 35 and a brca1 carrier i wanted the test as cancer had my great gran nan mum and sister all at extremely young ages so i knew i had the faulty gene before my results it was obvious
im glad i got tested and last year i had a oopherectomy with keyhole to cut risk of ovarian and breast cancer
im lucky to have the choices to change what i can before its too late as it was for all my family
i have 2 young girls and did it for them aswell you have to do whatever you can and im considering double masectomy

Thank you all so much for you comments/advice, I have been visiting family abroad for a few weeks so only just seen them, they are more helpful than you can imagine.
This is something I have only just started to explore, as I have got older I have started to contemplate such things more. My mum died when I was 13, over 12 years ago now and nothing has ever been said to me by anyone about screening/testing at 30 or any age, I broached the subject of genetics with my GP. This is something I shall raise with my GP practice, along with getting a second opinion which sounds like a good option. Although I imgine the genetics clinic may say the same thing, sounded like they were pretty black and white will little room for deviation. Especially since my mum was diagnosed at 40 which is their screening cut off date, she could have been told a day after her birthday for all they know. Plus the lump she had was very large and not a surface lump which I am told is more common which is why diagnosis was not earlier, according to the surgeon this would have been there for a while so earlier than 40. I think as Lilys daughters at the moment, I am quite happy not knowing too much but do need to start exploring my options really as you say, with regard to insurance/mortgages etc as wealth as my health. My mums sisters have passed her age of diagnosis so fingers crossed it was a one off for a purpose I see no reason or rhyme. Thank you again for your help and feel free to keep in touch you lovely people.

Libby

One thing to consider which you may not have already is that of health insurance. You are still young and may, at any time in the future, wish to purchase life insurance for yourself or to protect your mortgage. Although at the moment insurance companies are not allowed to see the results of these tests without your permission, they are trying to fight this legislation and they may win. Therefore, you may want to consider that even if you obtain a genetic test result that suggests an increased risk of developing BC, you must remember that it is exactly that - an increased risk - not a guarentee. However, if legislation is changed, an insurance company will not view it like this, they will simply load the premium or refuse a policy.

However, this is merely a practical issue and is probably insignificant when compared with the possibility of having profilactic therapy to prevent developing BC.

x