Hi girls,
Having had breast cancer in 2009, I have just been diagnosed Braca 2 gene. I have 2 girls, so am worried about them.
We are seeing the geneic nurse in June. I have already had my ovaries removed, so my next step will be bi lat & reconstruction.
I am still a bit confused as to the difference between Braca 1 & 2. I also keep reading on web link between Braca 2 & pancreatic cancer! Oh not something else to worry about!!!
Would appreciate feedback, love to allxxx
Hiya sea
I was diagnosed as brca2 in 2010 following bc in 2006 and the other breast in 2009. I have 21 yer old daughter and 17 year old son neither have been tested yet but my daughter has spoken to he genetic team but still a bit undecided and has lots of other issues to deal with anyway.
It is a worry for me but i think she feels it would be more of a worry to know as shes not at a stage where she would contemplate surgery.
I havent had bilateral mastectomies but did have a hysterectomy and ovaries removed in 2010.
With regards to brca1 and brca2 is just means different genes and within genes are different areas so you can get loads of different mutations within each one… Some have deletions where bits are missing, some have insertions which have extra dna code, and sone are just muddled up. Both have a risk of breast cancer of around 60%…l brca 1 is slightly higher for breast and quite a bit higher risk of ovarian 40-50% for brca1 and about 20-30% for brca2… Brca 2 does have a higher risk of prostate cancer and male breast cancer, as well as pancreatic cancers but these risks are much lower the or BC and OC.
Do get in touch if you wanna chat some more x
A lot of stuff on the web is out of date or unreliable and a lot i people personal opinions so try and stick to reputable sites like nhs or gov or academic.
Hi Sea, i was found to be carrying brca1 and 2 and had double mx last aug with recon,my eldest daughter tested negative and my youngest was positive,shes 28.she should have had double mx last wk but it was cancelled,she should get another date soon,then when shes 35ish she will have her ovaries removed,she is ok with all this as she would rather have the surgery than the uncertainty of waiting to see if she develops cancer then has to have chemo.my neice however whos mum died at 41 doesnt want to know and refuses to be tested she says she will deal with it if and when it happens.
Dib does your daughter who positive have both genes as well? I know its very unusual to carry them both. Good luck to you and your daughter… Hope when she has her surgery she recovers well. X
hi lulu,she was tested positive for brca1 and i think the term they used for brca 2 was indeterminate,or something similar,she has a great attitude to the upcoming surgery and im sure she will be fine thanx
hi all,i am having my expanders out in 6wks and replacing them with implants so today i stopped taking tamoxifen ready for surgery.because i am postmenapausal i will be going onto something else instead of tamoxifen afterwards but i cant for the life of me remember what its called,can anyone enlighten me?and also what are the side effects likely to be? im hoping to lose the stone in weight i put on whilst taking tamoxifen!!
You will prob be going on an aromatase inhibitor… These are letrozole (femara), exemestane (aromasin) or anastrazole (arimidex). They all work very similarly… The main side effect is joint pain and less hot flushes.
Was your brca 2 an unknown variant? This means they have foud a change soewhere in the brca2 gene but dont actually know if it causes cancer yet.
I know somebody with brca 1 and brca2 UV and the UV gets discounted here, for example if you didnt have brca1 only a UV in brca 2 it would be treated by my unit as negative.
Good luck with your exchange surgery x
oh blimey,it sounds very complicated,i dont know all the ins and outs like many of you girls do,they said positive for brca1 and something about brca2 aswell but i cant remember the terminology,i was given a letter to give to the gp`s of any relatives who want testing so i will have to find it out and see if it says on there.I admire all of you who know so well what you are taking and all the terminology,im afraid it goes straight over my head,not good for someone who works in a hospital!!!
Hi girls, thanks so much for your response. I am going to see the genetic nurse in June, so will get more information then. Love to all xxx
Dib not everybody wants to know all the details… I have a friend and she lives in her ‘bubble’ and if anybody want to know anything about her diagnosis and treatment she says ask lulu cos i know more about her than she does lol.
Some people find they cope better just being told the bare minimum and getting on with it, others dont feel satisfied untill they have read every bit of information ever written on the subject lol.
I was only asking the questions inresponse to what you had posted because its unusual to have two mutations, but please dont feel obliged to seek out the answers unless you really want to.
Sea good luck with your appt in June.
Lxx
I was given the news that I had Brca 2 on Tuesday after having chemo, mastectomy and radiotherapy following a Grade 3 triple negative diagnosis last July. I have two daughters of 30 and 27 and my sister, who died last August has two much younger daughters. We have many daughters of my siblings too as we are a large family. We are still all trying to come to terms with this which has made sense of a lot of the incidences of both breast and ovarian cancer in our family. I was advised at the meeting to consider having the other breast removed as I had an 85% chance of recurrance in the ‘healthy’ breast. I was also advised to consider having my ovaries removed. These are no brainers for me because I have had a worrying itch in my remaining breast and don’t have any problem in having another mastectomy with perhaps the chance of a double reconstruction at the same time. I also have no problem with getting my ovaries removed. I am more concerned with my daughters and the other members of the family who may or may not be affected. It is difficult to know what is best to tell the younger girls as they won’t be able to ‘do’ anything about it for some years in any case. Has anyone any advice about what to tell and what not to tell in this case? They are just starting to go through puberty and grieving for their mother without having to deal with this on top.
Jan
x
Jan,
Below is a link to a good booklet on BRCA published by the Royal Marsden. There is a section on it about talking to children, which may be of help.
royalmarsden.nhs.uk/consultants-teams-wards/clinical-units/cancer-genetics-unit/pages/brca-booklet.aspx
Jennie
Thanks Jennie. I have just downloaded the booklet and will have a good read. Jan