Hi ladies , im only 26 and recently lost my mum to breast cancer at the age of 47 . I’ve had genetic testing due to a strong family history of breast and ovarian cancer .
The results confirmed I have a breast cancer causing gene (apparently a newly discovered one only found in our family so far!) . I’m so worried about this but whenever I try to talk to my dad / brothers about it they make me feel like I’m over - reacting - they say that I may never get it anyway.
I had decided to go for a double preventative mastectomy but now I’m thinking do I really need to? Is it really that big a deal?? I have 2 young children and the thought of never being there for them growing up scares me !! Do I take a gamble and think it may never happen to me or do I stick with my decision to butcher my body when people think I may never get it so it’s pointless??
I know only I can make the decision , but my head is all over the place I need some perspective! Hope someone can offer some advice. Thanks .
It is a very hard decision to come to and you can be influenced by others around you but ultimately it’s your body and your life so you have to do whats right for you.
Your famiy is correct that having the gene change doesn’t mean you will definitely get cancer but you have a much higher than average chance of getting breast or ovarian cancer when carrying a faulty gene… It’s usually around and 80% chance of developing breast cancer in your lifetime and somewhere between about 30 and 60% of developing ovarian cancer… There are two known genes that can have faults which results in breast cancers… BRCA 1 and BRCA 2… They stand for BReast CAncer gene 1 and 2… Ovarian risk is higher in brca 1 than brca 2… But the breast cancer risk is similar for both.
Your genetic team should have counsellors and psychologists working with them and it might be useful for you to have a discussion about yur concerns with them so you are happy with decision you have made… There is no screening available normally until age 30 but even with a gene change breast cancer developing in your twenties is unusual (but not impossible).
I would suggest going back to genetics and try to arrange to speak to them in more detail… Write all your questions down and don’t feel pressurised into doing or not doing something which your not happy about.
Lula is so right it is your own body. But being a carrier of this gene is something that you need to really understand so you can make the right decisions for yourself.
I’ve been so lucky with my genetic and family history team it is amazing the difference in care/ councilling depending on where you live! I had to go through pretty strict councilling before being able to even have the test.
Someone on the forum did post a link to ‘an intro to BC 1 & 2 cancer’ which was produced by the Royal Marsden. This may be worth reading. Macmillian and Breast Cancer Care also produce some really good booklets, but I do agree with Lula I think going back and talking through your results in person would be most benefical.