Hi… New to this site today…
Just got genetic results on Monday… I’m 36 and have 2 young daughters. I have alot of thinking, discussing and decisions to make in the near future.
My mum has had breast cancer twice (primary tumours on each breast 2 years apart) my grandmother died from ovarian cancer last year and a few great aunts with breast/ovarian cancer.
I’d love to hear from anyone who is or has been in my position… I just don’t know where its all going to go!!
Thanks xx :-))
Hi Carebear
I am in a similar position to you, I have two daughters, and in November I found out that I carry the BRCA1 gene. I have had BC and have previously had a WLE.
I have found the whole BC experience to be by far the most traumatic thing in my entire life. It just effects everything. As far as the BRCA1 gene being positive, it is initially devastating news. Even 5 months on the only people who know about it are myself and my husband, I am just too upset to tell anyone about it. Additionally I need to think about the implications for my daughters.
I have decided though that I have to have surgery to reduce my risk, so I am going to a double mastectomy.
I looked at it like this: what would be the worst situation for me, and this would be to get BC again when I could have done something about it. I have seen some fantastic photos of mastectomy operations with the reconstruction, and in the summer I will be going down this route.
I have told people about the operation,but I do not want people to know the full reasons why, I have just said my risk of BC in the future is high, so going with the op.
I will need to discuss the genetics with my daughters and family at some point, but after my ops I think.
You are starting a very difficult journey, all I can say is this site is fantastic, people will really open up to you and help you with any questions. you are facing some very difficult decisions, be choosy with who you discuss this situation and take you time to decide what is right for you and your family.
take care
xx
Hi carebear,
I am new to this site today too. I also have the BRCA2 gene. I had DCIS in my left breast in 2008 when I was 29. They agreed to also remove my right breast in the same surgery because of my family history of BC. My grandmother died of BC as did two of my Dads sisters. His third sister had BC thankfully she is well now.
After my surgery I was offered to be tested for the gene which I did. It came back positive. After receiving the result I was happy I had chosen to have my right breast removed also. Because I was positive for the gene my family were able to be tested too. It turns out that the gene was passed to me by my Dad. It is horrible to know that we carry it but now we are aware we can get regular checks. I am now under a gynocologist at the hospital to have yearly checks on my overies.
My cousin who is only 30 had her breasts removed because her mum died of BC and she was continually worried. She has now been tested and it turns out she has the BRCA2 gene also so she is happy she went through with the surgery!! She had reconstruction in the same operation and her new breasts look amazing! She said having he surgery was the best thing she could of done and no longer has any worries.
I am due for my reconstruction in two weeks and am starting to feel very nervous.
I think that if I had found out I had the gene before I had BC I would of gone through with an operation to remove my breasts just like my cousin did.
I have a small daughter and it does worry me that I have passed the gene to her, but once she is old enough at least I can have her tested so we can keep an eye on her.
I wish you well with whatever you decide.
Hi Hayzer… Thank you for your reply to my message…
Its a terrible thing knowing we have this gene and know we have to make big decisions on our health regarding surgery…but the way I’m looking at it I’m lucky I haven’t been told I have cancer!
So not long now til your reconstruction… I’m sure you are nervous but it’ll be good to see your new “set”…
What does DCIS stand for??
Look forward to hearing from you again soon
Carebear xx
Hi there!
Just joined tonight.
I found out a year ago that I carry the BRCA1 gene. In March last year I had my ovaries removed and then in August I had a bilateral mastectomy with no reconstruction.
I have decided not to go ahead with any reconstruction. I’m looking forward to being a year post op when I can get my Amoena Contact Breasts!!! Woohoo!
Btw, I’m 41 and have two families. My older gang are in their late teens and my second family are aged 3 and 2 respectively. I have an exstensive family history of BC.
If I can answer anyones queries regarding my ops i’ll try and help.
Tillyannie x
Hi Tillyannie…
So you’re on the other side now. I’ve my initial appointments with the various Consultants to discuss my options and procedures. Don’t think I’ve much of a choice really… its better to try and prevent if possible.
If I did decide on bilateral mastectomy I think I’d have to have implants although I know it adds more trauma to the surgery…I just think I’m too young (36) to be working with the others! My mum has had double mastectomy’s - 2 separate cancer tumours and decided not to have any reconstruction…she was going thro enough. Her "fake boobs are great… you wouldn’t know to look at her!
About your op for removing ovaries…were you put on HRT and was your op done keyhole?
Your double mastectomy… how did you cope with the surgery…what was your recovery time?
I hope you don’t mind me asking these questions but at this stage I have alot of questions and don’t know anyone who’s been thro it?
Hope I hear from you again and hope its not too long til you get your Contact Breasts!!
Carebear xx
hi carebear
i found out in jan i have the brca2 which we found out last week i got from my dad even though we have no family history on his side of breast or ovarian cancer nor really any cancers linked to brca2.
like your mum i have had two seperate primary BCs 3 years apart at 37 and 40… iv had a lumpectomy on each side…
iv spoken to my surgeon about bilateral MX and im awaiting referal to gynae and to speak to plastic surgeon about recon… but at the moment im not in any major hurry to have mx and feel that id maybe rather just wait and if i get another tumour id then have the surgery at that time.
i may go for the oophorectomy sooner, but one of my tumours, the most aggressive one, wasnt hormone sensitive so not sure how effective that would be on its own.
Lulu x
Hi all,
I am new to this site today and have been reading your posts above.
The reason I am here is because my Mum passed away on the 1st April from Metastatic Breast Cancer. She was diagnosed with breast cancer in May 2008, but we found out in Jan that after battling through, it had spread to her brain.
Luckily, my Mum and I started the genetics process last Feb, but as she was only the 3rd lady in our family to have BC, her blood was entered into a ‘research’ group, and it takes a lot longer for her results to come back. If she has either gene, which they are pretty certain she will have, then I will begin the genetics testing process properly.
You all seem so clued up about things, and I have to be honest, at the moment I am completely terrified! So many ‘ifs and buts’ it’s hard to get my head around it all. I too have 2 small girls, so there is that to think about too.
I just really wanted to acknowledge that I had read your posts, and say that you all seem so positive, it is really inspiring. I wish you all the best in your decisions, and hope that by reading more posts on this website I can be put at ease a bit!
Becci x
Hi Becciboo
Thank you so much for posting a “post”… I am so sorry to hear about your mum. It must still be very painful for you.
I’m afraid I’m not very clued in with all having this gene involves but I’ve got my first meeting with Breast consultant on Tuesday to hear what he has to say and I’ve a few questions of my own.
I’m sure your anxious now to see whether you have the gene or not… I hope you don’t have to wait much longer as the waiting for results is awful…
The only way I can look at having this gene is there is nothing I can do about it… I could sit down and cry and worry myself sick… or gather all info together to decide what is best for my and my family… I would rather prevent developing cancer if I can rather than being diagnosed and having to go through treatment…
I watched my mum battle breast cancer twice and watched helplessly as she underwent surgery and treatment TWICE!! She had just got her life back from first time around when she was hit with the news again…
I think when you get your results you will be strong enough to deal with it IF you have the gene… you have to like me for your little girls too…
Keep in touch and let me know your results and if I can be of any help please dont hesitate to contact me…
Best wishes
Carebear xx
Hi Lulu34…
Thank you for your post…
Wow you’ve certainly been through the mill and so young to have gone through BC twice. I’m sure you feel you have had enough intervention just now and the thought of anymore is just unthinkable!
Its the difficult part knowing what to do for the best and at the right time before any cancer occurs… You don’t want to leave it too late but its just a guessing game where that is concerned.
You sound a positive lady and I’m sure you will make the right decision for you and you can deal with whatever you need to do.
I wish you all the very best and please do keep in touch…
Carebear xx
ps You look amazing in your photo!