Brca 1 newbie needing some help

Hi, I’m Vanessa, 32 years old. Found out last year I have inherited brca 1. I had another meeting today with my consultant and I am going ahead with preventitive surgery. I just wondered if anybody else has had the surgery, and how it how’ve in relation to scars and how it was emotionally? I am having the expanders put in first then implants 6 months later, thank you everyone x

Hi Vanessa and welcome to the BCC forums

In addition to the support and shared experiences you will soon have here please feel free to call our helpliners, our team are here 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

You may find the BCC reconstruction and breast cancer in families information publications useful and here are the links:\_breast\_cancer\_in\_families.pdf

There are also more threads from users seeking support on this issue which you may wish to join in, you can read them here:

Take care


Hi Vanessa

I have Brca1 but also had BC twice before I found out I had the gene. I have now had bilateral Mx with expansders which are permanent although early days as had op just over 2 weeks ago.

my daughter found out 2 weeks ago whilst on honeymoon that she also is Brca1 she is 30. She has appointment in July with surgeon to discuss.

Just wanted to let you know you are not alone and in my opinion you are doing the right thing . A big decision and I hope all goes well for you.

Wendy x x

Thanks Wendy for your reply, yes mum had brca1 but we lost her to ovarian cancer at 52. My family has strong ovarian history.what a shame for you and your daughter…how did you find the op? I’m very nervous abouT it. Thank you again for your reply xx

Hi Vanessa,I found out I was brca1 carrier after being diagnosed with BC and after having had a lumpectomy.I went on to have double MX with expanders which were removed last year and replaced with permanent implants.Its been a long journey but now the scars are barely visible,I do have a little pain if I overdo things but nothing too bad.I am more than happy with the way my boobs look and am mentally relieved my killer boobs have gone.My daughter also tested positive for brca1 and had double MX with tram flap recon at the age of 28.She too is happy with result.(my surgery was LD flap).
Good luck with your surgery,

Thank you so much for your help! Can I just ask one thing, I am very slim so won’t be using any excess skin so it will just be expanders, will I have a flat chest and no nipples for a while ? I’m not sure i will cope very well with that? Thanks dI xx

Di, did my message send? X

Hi Vanessa,my own experience of implants were that they start off very small but were filled with saline solution 3 times,a month apart each time,this can be quite painful as they feel ready to burst!This feeling lasts a couple of days,also they are extremely hard like cricket balls,but when they are replaced with the implants these are much softer and feel very natural,infact mine looked better than original boobs which at the age of 51 were beginning to sag!!I could have had nipple recon but chose to have them tattooed on instead which i am very happy with.I hope you are happy with yours too but remember it takes time,your initial outlook will be quite different from the end result.Good luck chick,

Ok, thanks very much for your info and help. Glad it worked for you and your happy with the result x

I’m 34d does anybody know if I can keep my size after op using expanders? X

I was 36E but surgeon says the biggest he can get me is poss C which suits me fine although I expect we are all different.
Wendy x x

Hello Vanessa,
I have a brca1 mutation which I was diagnosed with only a year after my treatment for breast cancer finished. I decided to have bilateral mastecomies (I had had a lumpectomy) and when they did the surgery, they found a tumour in my ‘other’ breast. I have only recently started to post on threads like this one as I always feel that I am the last person a newbie wants to hear from. I hope that you can gain support from the forum and knowing that you are not on our own. I have to say that having just met a friend, I think its really hard to explain what it means to live with brca1 and how tough the decisions are. I hope you can hold on to the fact that you can at least take steps to manage your risk.
You asked about reconstruction. I was a 34B 32D prior to surgery. I was told it had to be implants as there was not enough tissue to make two new breasts. I kept my skin and nipples but had expander implants because I had had radiotherapy and wanted us to be able to adjust the implant.(I am a bit confused about when expander implants are used- is this when they remove the breast skin?) Anyway, the results were amazing. I went on to lose the reconstrcution on the side that had radiotherapy, but on the other side it looks great. I have a minimal scar - a small line which goes under the nipple and then out from the centre.
One of my sisters is waiting for her op date- she is a year older than you. She Where are you having your surgery?

Hi rattles, thanks so much for your reply, it is a tough decision but I think the best one. Im a single mum with a 5 year old so I’m worried how I will cope really. I was told I had the gene a year ago but couldn’t decide what to do and just didn’t want to face it really so I had regular Mri’s etc which I panick over.i went to my consultant recently and said I have decided to go ahead with the surgery.i am meeting psychiatrist in 6 weeks then surgeon.doc said op will be towards end of year.I have spent the last few days crying and a bit of a mess worrying about it so its good to talk with other ladies on here that understand. I don’t want to sostar wierd but I’m so worried about waking up with a flat chest and not coping with it. I just don’t know how I will cope… I will be having the 2 stage surgery where the use expanders and fill them then have implants around 6 months later… It’s just been a lot to take in, I’ve been pushing away my boyfriend and I have no idea why… Think he’s fed up of me now! Rant over!!! Thank you so much for your reply rattles! oh I don’t know where I will have it suppose will find out when I get my exact date. vanessa xxx

I see you have a 5 year old too! :slight_smile:

Hi Vanessa,
My daughter is 6 now. I am not sure I have yet dealt with what it will all mean for her as my own health has very much been our focus. It is hard and it is emotional. I think you have to take it all one step at a time. Three is no ‘right’ way to feel, just go with it. I had some counselling which helped me alot. I think when I found out, I just thought ‘oh, well that explains why I got cancer’ and I did not understand my ongoing risk.
I am still not sure what type of surgery you will have. I had two-stage surgery and have a temporary implant which will be replaced. I am not sure that you will wake up flat-chested as there will be some fluid in the exapnder. By having the surgery before an cancer, you are giving yourself the best chance of a good cosmetic result and I think when you look back, it won’t be as bad as you fear.
I can only tell you how I coped which was to do quite a lot of research. Have you thought about contacting BCC - they could put you in touch with a woman who has had the type of surgery you are going to have. I think it would be a big help. BCC - if you read this can you post the link for Vanessa?
I am sure you boyfriend is not fed-up, but its hard for partners too. You could try and talk to him about how you feel? Its important to be supported by those around you.
Rattles x

Dear Rattles and Vanessa

The service Rattles mentions is our one to one support service. Here is the link with more information:

I hope this helps

Very best wishes


BCC Moderator

Hi all you lovely ladies, ive just been told i carry the brac1 gene, im struggling with this, its very early days. My mjm was 29 diagnosed and 33 when she passed away… im very emotional and reading all your comments makes me feel normal… it just seems like im in a big dark tunnel and i feel so alone… any comments would really support me… thank you all. Xx

Hello Maria,
Just wanted to send you lots of support. It’s a big shock isn’t it? I think to give yourself lots of time to adjust and take it in. Don’t feel pressured to ‘do’ anything or feel a certain way. I think you have to feel your way forward, step by step and just hold onto the fact that it does get easier. There is lots of support out there, use it. There are no medals for suffering in silence.
Rattles x

Hi Maria just wanted to say I know how you feel and for a start it is very hard. I had very little family history and turns out after having BC twice I have brca1. I wish I had know many years ago as I kow what I would have done. It is a very personal decision so give ur self time to consider your options. I have had a double MX with immediate recon just 5 weeks ago and feel like a weight has been lifted now as I do no have one regret. I have 2 daughters and the youngest who is 30 has just found out whils on honeymoon that she also has my BRCA. That is worst than my diagnosis but she is very positive and seeing the surgeon in 4 weeks to discuss her surgery . My mum who has geven me the gene lived to age64 and never had bc. I am here for you if you ever want to talk.

Wendy x x

Thank you so much wendy… i hsve s daughter who is 25 this seotember and i just feel so guilty. Ive hsd 6 previous operations on my left breast, all benign but im scared quute bad. My mums sister hsd bc and passed awaybat 45 and mums other sister has bc in both breasts. Thank you so much for your kind words. I went to my gp today who was fsntadtic and is going to arrange some counselling. I no you said about the support coukd you point me in the right direction please? I am so pleased to hear that you are recivering well, im also terribly sorry to hear about yr daughter, its such a shock and overwhelming me at times, my gp signed me off work for a week just to give me some process time, but thank you for saying it gets easier. Thank you again… maria. Xx