Hello Nat10

I'm sorry to hear about the loss of your Mum last year and just how much you're struggling with the news that you also carry the BRCA1 gene. 

It's good to hear that your most recent tests and scans were clear but I'm sure that many of our members here will understand the fear that comes with living with the "what if" that lurks in the back of your mind. As you've already mentioned, being stuck in lockdown makes things much harder as well. 

I'm unsure who arranged for your genetic testing but if you still have access to your local genetics service then I wonder if it may be worth getting in touch with them to talk about things, how you're struggling to cope and what your options may be. If you don't have direct access to contact the genetics services then I'd suggest speaking to your GP who should be able to arrange for you to speak to someone. 

You might also want to have a think about contacting Cruse, a charity that offers bereavement support. Grief is a natural process but it can be devastating and it can help to talk things through with someone who understands. 

I hope this helps you to find the support that you need and that things improve for you soon. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hello I'm so sorry about your loss. Brca1 positive hearing that must've been so horrible especially about your mum to help you! All I can say is there still amazing people on this chat group and they have helped me through my problems but I don't think I should share with you at this moment in time However if you do want to talk I'm always here take care

Yes it's been a hard time without her here and she passed away before I could tel her I did test positive. I always overthink thinks and like I said lockdown has not helped at all I just feel being stuck in the house for a full year has not done my wondering mind any good at all. 
I always think the worst of situations. 
thank you for your reply to my post. I would like to take to others that are Brca1 too 

thanks 

Natalie x 
 

I'm a constant worrier and when that happened to my mum last year it did scare me a lot. My mI'm didn't find out she was Brca1 until her cancer kept coming back so if she would have known this before maybe the outcome would have been different. But in a way I am glad I know I carry the gene as I am 1st I. The que for tests like it's coming up to my yearly mri which will be my second scan that will be in March. 
like I said massive over thinker ! 
Thankyou for your reply 

Nat xx 

So sorry to hear you lost your mum, my mum has asked me to go for genetic test as my Dad had a Genetic cancer 6 years ago, I decided not too, so I do think you are extremely brave.  Dad now has mouth cancer after his 5 years clear in Jan and only two months, so as much as Mum pushing us for test I dont see how it will benefit to know.  Does it make you feel safer or would it be different depending on result?

Hello 

sorry to hear about your dad being ill.

I went for the test after my mum pushed me too. I went for genetic testing back when I was 27 now I am 32 I found out last year that I was Brca1 positive as my mum got so ill I wanted to have to test so she would know, sadly she passed away the week before I got my results.

when I got the letter saying I had the gene I literally cried because I really hoped it would be negative. 
but unfortunately it was positive. But in a way I am glad I know as now i can have regular mri scans, I can have a ca125 test to check My bloods etc and if I suspect anything is wrong I will get seen ASAP. 
so In a way yes I feel better knowing I do have the gene but also feel like I find it hard to deal with like I have been given a life sentance and worry a lot and also google a lot too which I do not recommend.

my mum got cancer at the age of 43. She didn't know she had the gene and found out when she was around 48/49. She passed away at 51 bless her heart. X 

also what is worrying me is I want more children as i have been with my partner now a couple of years. I have 2 older children from a owt relationship which are 13 and 10. 
I have been to see specialists that deal with all of this and the consultant said I can have as many children as I like and when I have finished my child bearing years then I can think about having the preventative surgery which I do want! But at the moment I want to live my life a bit more if you know what I mean. 
 

Thanks for your reply and sorry for the long reply from me. I actually feel a bit better now I have written that and I actually have joined this char :) 

Thankyou 

nat xx 

Hi Nat

I am 42 and found out I had Brac1 at 32. Xx I just posted my first post but feel free to message me any questions I've had all my surgeries now so may be able to answer any questions you have xxx

Sam 

Hi Sam

i have just been diagnosed with BRCA1 

I had my ovaries removed 12 years ago due to extensive family history but unfortunately was always told we could not be gene tested unless there was a living member with cancer 

that is now me - I have breast cancer 

the surgeon performed a lumpectomy despite me wanting a mastectomy and initially refused gene testing saying I already had cancer 

thankfully my oncologist listened.  Having now completed chemotherapy I shall be having a double mastectomy 

can I kindly ask did you have reconstruction and if so did you use silicone or your own skin 

many thanks 

norma

Hey Norma, 

I'm not sure if you're aware, but the discussion you posted on this morning, hasn't been active since October 2022, so there's a chance you may not hear back from Sambob.

I really hope that won't be the case but if you don't receive a reply, you could try reaching out to others on more recent discussions you find about this topic or by starting your own discussion.

I hope this helps and all goes well with your double mastectomy when the time comes.

Kind regards,

Steph, Cancer Chat Moderator