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Brca 1 newbie needing some help

23 REPLIES 23
Lulu34
Member

Re: Brca 1 newbie needing some help

its hard to decide and different docs may suggest a different order to do things.... i know one lady who was told she had to have her ovaries out before they would consider breast surgery which seems very wrong as the the risk from breast cancer occurs at a much younger age than ovarian cancer.

but i its probably best to have the discussion with your team and decide together.... no reason why you cant get the ball rolling with the fertility dept and the plastic surgeons.

i think in terms of pregnancy it would perhaps be more of an issue if you want to breast feed in which case it would make more sense to do the PGD first.

but having a pregnancy shouldnt affect your reconstruction as the breast tissue would be minimal and wont grow and stretch like they would if they were your own breasts .

good luck with your appt

Lulu xx
Guest user
Not applicable

Re: Brca 1 newbie needing some help

Hi everyone,

 

I'm 27 and found out I'm BRCA 1 two months ago. I'm very glad I've found this thread as reading the comments already reassures me that I'm not alone with how I feel. It's good to read other stories. I'm trying to stay positive since I've had my results, although do struggle at times. My dad found out he is a carrier 2 years ago so I've had that time to get my head around the fact it is in my family but I wasn't ready to have the test done until early this year and since I found out I'm  relieved I now know. I think I've already made the decision to have breast surgery, I have an appointment next week to discuss this. I'm having difficulty though planning my life. My boyfriend and I would love to have a family and are currently trying to decide whether to try PGD but unsure what order to do this and the surgery in. I think this is because of my age I feel both should be happening around the same sort of time but bearing in mind waiting lists etc for surgery and PGD, I just don't know what to do first! Fortunately I have a good support network of family and friends and it's good to get their opinions but would love to hear from others who are in/have been in a similar situation to me. 

 

Nikki x

Wendy56
Member

Re: Brca 1 newbie needing some help

Maria your genetics people should be able to offer counselling if not Macmillan or maybe ring the helpline on this site. Which genetics centre are you attached to ?

Wendy x x
Guest user
Not applicable

Re: Brca 1 newbie needing some help

Thank you for your kind words, i am taking it in but its a huge shock... i am trying to get some counselling as i feel i need it. Someome wrote thatthey had time bomb boobs and thats exactly how it feels. I will be having a hysterectomy as well and i suppose as early days it is, its a decision i have made. I feel gulity for my daughter, my dad who watched my poor mum pass away and now this with me, i feel very emotional and very mixed, is this a normal reaction? Im guessing reactions do not come with a manual? Thank you again for your kind rdply. You say about support, would you be able to point me in that direction please. Thank you so much.. xx
Guest user
Not applicable

Re: Brca 1 newbie needing some help

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
Wendy56
Member

Re: Brca 1 newbie needing some help

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
Rattles
Member

Re: Brca 1 newbie needing some help

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

Guest user
Not applicable

Re: Brca 1 newbie needing some help

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
Janet_BCC
Member

Re: Brca 1 newbie needing some help

Dear Rattles and Vanessa

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

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support

I hope this helps

Very best wishes

Janet

BCC Moderator

Rattles
Member

Re: Brca 1 newbie needing some help

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

Vanessajayne31
Member

Re: Brca 1 newbie needing some help

I see you have a 5 year old too! 🙂
Vanessajayne31
Member

Re: Brca 1 newbie needing some help

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
Rattles
Member

Re: Brca 1 newbie needing some help

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?
Rattles

Wendy56
Member

Re: Brca 1 newbie needing some help

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
Vanessajayne31
Member

Re: Brca 1 newbie needing some help

I'm 34d does anybody know if I can keep my size after op using expanders? X
Vanessajayne31
Member

Re: Brca 1 newbie needing some help

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

Re: Brca 1 newbie needing some help

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,
Di.x

Vanessajayne31
Member

Re: Brca 1 newbie needing some help

Di, did my message send? X
Vanessajayne31
Member

Re: Brca 1 newbie needing some help

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
dib
Member

Re: Brca 1 newbie needing some help

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,
Di.x

Vanessajayne31
Member

Re: Brca 1 newbie needing some help

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
Wendy56
Member

Re: Brca 1 newbie needing some help

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
Lucy_BCC
Member

Re: Brca 1 newbie needing some help

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:

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/breast-reconstruction-bcc7

http://www2.breastcancercare.org.uk/sites/default/files/dbc_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:

http://www.breastcancercare.org.uk/community/forums/new-member-introductions/very-confused-frustrated

http://www.breastcancercare.org.uk/community/forums/worried/family-history-genetics

Take care

Lucy

Vanessajayne31
Member

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