I have bilateral breast cancer, I am 29 and from a family without history of cancer. I am generally fit and healthy so haven been offered generic testing.
the aim of the test is to tell me whether or not i have a faulty gene which increases my risk of cancer. Given I already have breast cancer, I am not sure what benefits I will get from having the test. I worry that my recent surgery which allowed me to preserve some breast tissue whilst removing the cancers (I am still waiting for confirmation margins were clear but I went from an E cup to a B/C cup as a result) will not give me piece of mind if I test positive.
has anyone been through something similar and can you offer me some advice please.
i am booked in for this Friday, but so confused!
xx
Hello Cocof84
Welcome to the forums. You’ve come to the right place for support as many of the users of this site have a wealth of information and experience between them.
While you are waiting for replies may I suggest that you give our free helpline a ring on 0808 800 6000 and have a confidential chat with one of the breast care nurses who are here to support you, lines are open to Monday to Friday 9.00 – 5.00 and Saturday 10.00 – 2.00.
Best wishes
June, moderator
Hi Cocof84
I too was diagnosed with bilateral breast cancer but at 49 years of age. Although my mother did not die of cancer (she had empysema) both her mother and father died of cancer before I was born.
I too have been referred for genetic testing which I will do as I have four children and need to know if I carry this gene so that they can be tested!
Being a gene carrier also increases the risk of ovarian cancer and I would have my ovaries removed even though I am not currently menopausal.
My feelings are that you are best to be informed so that you can make the right decisions in the future. I have had bilateral lumpectomy’s but have to have a further op to get clear margins on one side. I would imagine that by the time I get tested for the gene and get the results I will have had two lots of surgery and also radiotherapy, so not sure if I am postitive for the gene that at the moment that I would go ahead with a bilateral mx right away (anyway I am hoping that it will be negative) but I would still want to know.
There is lots of information available on the web about genetic testing in breast cancer which I have been reading avidly. Good luck with your appointment on Friday.
Sharon x
Hi Coco,
Sorry you are having to deal with this. You don’t say where you are in terms of treatment, but its a lot to think about when you are dealing with a recent cancer diagnosis.
I have had breast cancer in both breasts. I saw genetics after I finished treatment for my first breast cancer and the second breast cancer (in the other breast) was found when I had mastecomies. It was not visible on scans so I have been told it may have been there at the time of my first diagnosis.
Firstly, dont feel rushed into anything and dont panic about the appointment. Genetic testing is a process and it can be slow, and they will go at your pace. I was thought to be low risk based on my family history but I inherited the brca1 mutation from my father. If you have triple negative breast cancer and you are under 40, then you have a 20 per cent chance of having a brac1 mutation - this is the threhsold for testing.
Everyone is different. Some people, like roxy - and me- feel that information is power. But my sister does not want testing. It is very individual. Having a mutation increases your risk of ovarian cancer so can mean you can have them removed to remove this risk. It also means other family members can choose to be tested (if you were to have a gene fault). Genetic faults are rare, I think its something like 1 in 400 people and only 5 per cent of women diagnosed with breast cancer will have a mutation.
As we knew I had a fault when my second breast cancer was found, this determined the type of chemo I was offered as research was showing this particular regimen was more successful.
Take things at your own pace. Its a lot to manage. The Helpline is a brilliant way of chatting through the whole thing.
Good luck, Rattles x
Hi
Thank you for your responses they were both a great help to me.
Sharon - I did read that there is a link between breast and ovarian cancer if found to have the faulty gene. I do think that knowledge is power but I suppose I am fearful of almost waiting for recurrence if I’m positive. I am also not sure of the next steps for treatment until I get the pathology results.
Rattles - in terms of treatment I was diagnosed on 15 th May and was given further tests after which confirmed 2 more cancers. I have since had bilateral mammoplasty surgery last week. I have been told radio and chemo will be necessary but that the chemo could make me infertile. So lots to process and to consider.
I am lucky enough to have a fantastic support network around me but I already feel better talking to those who can relate.
Good Luck to you both and thank you, Corrina xx