Struggling to get my head around being BRCA2 positive

Hi and a very warm welcome to the online community

I'm sorry to hear that you've recently discovered that you're BRCA2 positive (link). I can only begin to imagine how this must feel for you especially as your mum has recently died. I have provided a link to Macmillan's information on it in case you haven't seen it.

It's perfectly normal to feel as you do right now and I'm sorry to see that no one in this group has stepped forward to reply as yet. Sometimes people in groups like to read what is happening but don't feel confident about replying to anyone.

If you want to talk to someone about how you feel and the choices that you have to make I can recommend calling the Macmillan Support Line on 0808 808 0000. It's free to call and available every day from 8am to 8pm.

When you feel up to it, it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi, thank you for taking the time to reply to my post. I really appreciate it. I will definitely make use of the Macmillan phone number.

Hi lozaroo,

I totally understand how you feel! I found out I was BRCA2 after years of wanting the NHS to test me. Both parents had cancers (breast -mum and lymphatic -dad) so I wanted to know my genetic history. I was 1/100 chance according to NHS-stats of being positive....  so I did a private test and I was positive!

i knew deep down this would be the case for a number of years !

one thing I am glad of in all this as like you now we are in control of our futures! There are a lot of women out there either not aware or could develop cancer but we are one step ahead.

Please do not feel on your own in this! I am happy to share my experience with you I have decided to have a mastectomy as I do not want my children to experience the horror of cancer and it’s treatment so if I can save them from  that it makes my decision easier.

In short even when I thought it would be me I was sooooo shocked when it was true and the acceptance is very hard! However If you focus on the positives that will make it easier xx

big hugs x

Hi, thank you for replying. It is great to hear from someone in the same situation as me. 

I wish I did feel empowered by knowing I am positive. The research has really got me down lately. I think I’m leaning towards having a mastectomy too, but there is no part of me that feels good about it. 

If you don’t mind me asking, have you begun the process with the hospital to start planning for the mastectomy?

Hi there i am new to this group only today so sorry if im not very good at this im sorry to here your news i am at the other end of the journey i found out in may 2018 i was brca 2 and even though there is a 50/50 chance of having the gene it is still no easier finding out that you do have it,it is a bag of mixed emotions thinking that my 2 children could inherit this gene made me feel terrible that is on me,all i can say is do what you feel you want to do and don't google anything i decided to go ahead with the double mastectomy and reconstruction because i felt that was what was right for me if i didnt have it done i would constantly be panicking,i am so sorry for your loss which must be playing a major part of your frustrationsx

Hey sweetie sorry for the delayed response, I am in the process of getting a date for surgery! This is a lengthy process to go through which includes genetic counselling, physiological evaluation by a psychiatrist, then they discuss your case and only then do you meet with a surgeon. I met mine at the beginning of January and have started the surgery journey.

I have been allocated a breast care nurse and will meet her agin in February to discuss more options. The surgeon will not rush the process so I think my operation  will be latter end of this year!

please feel free to ask more questions lovely and I will try to keep an eye out for your response.

take care hun xxx

Hi Lozaroo,

I am very sorry to hear about what you have been through. I am in a similar situation as I found out on Friday that I am Brca2 positive. My sister has also recently found out that she is as well. Even though we both knew there was a high chance we would have it, it does not make it any easier as all of a sudden you are faced with this overwhelming and life changing situation. My follow up appointment is not until next month, so I am busy thinking about what to discuss with my consultant. 

I hope you know that you are not alone and if you would like to discuss anything at all, please do not hesitate to. 

Hi

I have tested positive for BRCA 2 about 2 years ago.  My sister died of ovarian cancer and my other sister has breast cancer.  It has been a roller coaster ever since.  The breast surgeon at Guy's that I saw was very patient with me.  I am now 68 years old and so have decided on surveillance with tamoxifen as chemo-prevention.  I had my ovaries removed as this was straightforward given my age.

Today I had my annual mammogram and it all comes back to me. I don't believe there is a right or wrong with any decision. What is important to give yourself time and keep talking.  My husband and I had one counseling session at Guy's.

Good luck and what ever you decide will be right for you at that moment.