I have been recommended by my genetic consultant to use this site whilst I am waiting for my BRCA1 results.
In late 2007/early 2008 my aunt aged 47 was diagnosed with terminal breast cancer again. As her mother (my grandmother) had died at 50 she decided to get tested for the BRCA1 gene. It came back positive and in May 2008 my aunt passed away. It lead to all her brothers and sisters being tested, with my fathers result coming back as positive. From January of this year I started the process of being tested. Now nearly 7 months on I am now awaiting my results to which I will get in three weeks.
However the wait is starting to get to me and driving me mad. At the age of 22 I know I really should not be worrying but I feel that I need to know so I can sort my head out. Anyone who has been through the process got any words of advice for me to get through these next few weeks?
There’s going to be a lot of waiting in yoir life, unfortunately! If you do have a genetic misprint there is really nothing they can do-even in terms of monitoring-until you are at least 30. So sadly, it really is something you just have to put to the back of your mind as far as possible. Once you are older, you will be screened regularly, but learning how to cope with the stress now would be a good first step-otherwise you will just go around in ever decreasing circles. There’s still a good chance that you won’t have a misprint-and I hope that is the case for you.
although in terms of screening there isnt much they will do until you are older and depending on where you live in the UK you may be screened from 25 or you may not be screened til you mid 30s.
under 30 they wont do mammogramms, but there is a move towards mri scanning of brca mutation carriers under the age of 50.
some people with mutations opt to have elective preventative surgery… its not usually recommended for women in their early 20s but if you were adamant thats what you wanted they would counsel you fully before hand.
if your gene test comes back negative this means that you are not at any increased risk of getting breast or ovarian cancer and you would just get routine screening through the national screening programme from age 50.
even in women with gene mutations its still very rare to get breast cancer in your 20s or ovarian cancer before age 40.
even if your test comes back positive and you want preventative surgery this is still a long process with lots of waiting and waiting lists can be as long as 18 to 24 moths for surgery.
Lxx
Hi, thanks for the comments. I have already discussed my options if it does come back as postive. I am not planning on doing anything drastic for at least 10 years or so as like you have all said the likelihood of anything occuring is still low at my age.
However by knowing it will sort my head out in yes or no to whether I have it. Luckily I have a strong social network but even though my dad is a carrier I still find it hard to find anyone else to talk to who is in the same predicament.
emma not sure if you are on facebook but the have a group called brca sisterhood and there is also a really useful website called brca umbrella which has lots of information on risk reducing surgery including before and after pictures.
you might find it helpful to share experiences with others in the same situation.
x
Emma, I was diagnosed with a BRCA1 mutation in May. Unfortunately, I have already been through breast cancer and have had bilateral mastectomies and also recently had my ovaries removed. All I would say is; IF you do have a BRCA1 mutation, please think about the benefits of preventative surgery. I wish I’d had the benefit of genetic testing before being diagnosed with breast cancer, as I would definitely have had risk reducing surgery. At the end of the day, they are only breasts, and you can have reconstructive surgery. You need to remember that breast cancer can be potentially fatal.
Good luck with your results. Let us know how you get on. xx
Hi Emma, I really hope you get the result you are hoping for. Fingers crossed for you. I am 30, and had BC last year and underwent full treatment, and have just been rediagnosed a month ago. I had the test in April as my mum had also had BC and the results came in completely coincidentally 3 days after I was rediagnosed. I am BRCA1 which was a complete shock as, apart from my mum who was in her 50s when she was diagnosed, there is no other history of it in my family. My sisters and parents are all undergoing testing now and we are waiting for the results in a couple of months time. I had a mastectomy 2 weeks ago, and will be having the other breast removed in September as I really can’t face this a third time. You may be OK and it’s by no means definite that even if you were a carrier tht you’d go on to develop something - but I think you’ve absolutely done the right thing by having the test. Knowledge is power and you’re in a much better position to make a proper decision when you’re a bit older. Whilst I am a bit gutted at having to lose both my breasts, I do count myself lucky that at least I know what I’m dealing with now, and once I’ve had my surgery, the world can be my oyster like everyone else. Best of luck, do keep us posted x