What next?

Hi SarahJayne and welcome to the online community

I'm sorry to hear that you've discovered that you carry the BRCA2 gene and I can understand what a shock this will be for you.

I don't have any advice on how to tell your daughter as I haven't been in this position but I noticed that your post hadn't had any replies. It might be an idea to speak to one of the specialist nurses on the Macmillan Support Line as they will be able to help with advice on how to broach the subject. You can call them free on 0808 808 0000 and they're available every day from 8am to 8pm.

x

Hi, I was confirmed BRCA1 after having a breast cancer diagnosis.  
I come from a family with a very strong family history of breast cancer and although we had an inkling that this might be due to a faulty gene, it is still very difficult to process once you find out for definite.  I remember my mum been quite blasé when I got my results, saying “well we knew that” but I found it really difficult. Mainly because I knew that I had some difficult decisions to make.

After many months of going back and forth, I decided to have a double mastectomy with DIEP reconstruction and oophorectomy.  It is not an easy choice to make, to change your body on the off chance that you may get cancer but once I made up my mind, I felt a sense of relief.  At least I now know I have done all I can to prevent my cancer returning and if I am unlucky and it does return then I don’t have any what ifs.

I have no regrets with my decision.  The surgery they can do nowadays is amazing.  It is no means an easy road but I now love my new boobs! 

Unfortunately I have no experience of having to tell a child. Your daughter is 24 and it is not something you want to be thinking about at that age but the positive is that you knowing this information is allowing your daughter to have regular check ups and screening.  I have been going to a family history clinic since I was 24 and although at times I thought this was a pain in the bum! Having that support network and awareness of cancer, helped me to find my cancer early.

There is no rush to go straight to surgery.  Take your time, get as much information as you can.  I was told to write my questions down before I went and then at least you don’t forget them.  My surgeon was really good and showed me pictures of the surgeries he had carried out and I went a number of times to see him, so don’t be afraid to ask for another appointment.

I am happy to answer any specific questions you may have. 

I wish you and your daughter all the best.

Take Care

x

I found out I had the BRACA1 gene in November, my girls are a lot younger than your daughter. Our advise was to be honest. Our genetics counsellor at Guys hospital said they would chat to my girls when they are old enough. Maybe your genetics team would do the same for your daughter. 
It’s such a shock and a lot to take in.

Thank you all for replying and for sharing your situations with me. All great advice thank you. I will definitely take some time to digest the diagnosis and gather as much information as I can before making any decisions. The genetics counsellor offered to speak to me again if I need it so I can explore how to tell my daughter a bit more with them too. I hope that you are all keeping well. 
Take care and stay safe 

x

I’ve just found out today I tested positive for BRCA1. I have two daughters aged 4&5 so I don’t need to worry about what to tell them yet, but I will have to tell them something in a decide to have surgery. Not really sure what I’ll do yet. 

On a slight positive my mum only found out she was positive about 3 months ago and has been cancer free so far and is 64 years old so I’m trying to cling to that info and not go into panic/ ticking time bomb thoughts 

Like you I am BRCA 2 and have 3 sons, all adults.  For me they have been part of my journey and so were  aware at the beginning that I was BRCA 2.  My older sister had died of Ovarian cancer and my youngest when she was diagnosed with breast cancer that pushed Guys to be tested.  The genetics team at Guy's were very helpful and gave me a handout to give them.  Only one son has gone for genetic testing and he is negative.  My other 2 sons at the moment don't want to know. When I saw my breast consultant in August he said when they want to know they will be tested.

Over the last 2 years I have learnt honesty is the best policy.  How she deals with the information will be her decision.

I hope that helps

Hi Emily. Sorry to hear that you have tested positive too. It’s a lot to take in isn’t it. Glad to hear about your mum - that definitely is positive and I hope takes some of your worries away.

Take care

Sarah

Hi Ricki

thank you for replying. That definitely helps thank you. The genetics team in Birmingham have said they will send me a letter to give to my daughter too that will explain and I can then answer any questions she has. I can’t tell her at the moment as she lives a fair distance away and it really is a conversation I want to have face to face. 

Take care

Sarah