Advice Appreciated re BRCA1posted
Advice Appreciated re BRCA1posted I have posted this message on behalf of a new user Beverley 101
Hi - my name’s Bev (aged 31) - I’ve just come across this site and would really appreciate anyone’s advice.
Our family has a history of breast and ovarian cancer on my mum’s side. Sadly, my mum lost her battle to breast cancer 7 months ago (as did her mum, my gran, one year before that). As a family we had always suspected a genetic link, but it was only a week before mum died that she agreed to provide her blood for testing. The genetics clinic told us not to expect any results for at least a year (if at all), however, we found out this month that she has a fault on her BRCA1 gene.
Whilst there are four siblings, just myself and my twin sister have decided to take the test to see if we have inherited the fault - we should get the results in 4 - 6 weeks time. We don’t know if we are fraternal or identical twins - but I guess we’ll find out soon enough!
I suppose I’m getting ahead of myself - but you know what it’s like - you can’t help thinking the worst. I’d appreciate any advice from anyone who is in / has been in my situation. Up until finding out for definite about mum, I’ve always thought I’d feel quite empowered if I were to have a faulty BRCA gene as at least you could do something to reduce your chances (ie. preventative surgery), but more recently, it’s scaring the hell out of me. Particularly since becoming a mum (I have a one year old son).
Any advice on my situation would be greatly appreciated. Has anyone decided to have preventative surgery? You get such conflicting advice depending on who you speak to. I realise I should try not to worry too much about this until I get my results, but it is really hard!
Thanks in anticipation!
Hi Bev Hi Bev,
Our situations are quite similar.I am a 30 year old new mom -my baby is now 18 months old. I recently had preventative surgery as I carry the BRCA1 gene. My left breast has been removed and replaced with tissue, muscle and fat from my back. In about a month they will remove the right one. I have never had breast cancer.
I have been through a process that has taken about four years. The first part of this process was discovering about the gene. It then took me two years to decide to have a genetic test. The reasons for this were I was worried about being discriminated against if it was positive, this feeling was triggered by my genetic counsellor asking if i’d “reconsider having children” if my result was positive. I was furious and decided to leave it. I thought I’m only 26 too young to worry, everyone in the family gets it in their 40s/50s I can afford to leave it.
I started having regular screening which I funded myself. Although the genetic counsellors did eventually arrange MRI screening for me on the NHS. I went to London to see a specialist in breast cancer genetics to get as much info as I could. She told me about some new screening called nipple aspirattion I could get involved in (I didn’t).
My breast consultant suggested that if my gene test was positive I could have both breasts removed and reconstructed. I was shocked. I had never even considered this.
I became pregnant in 2004, at this point I had my genetic test. It was positive. It was a shock, I cried for a bit then the next thing I did was decide to have preventative surgery.
I had to wait until I’d had my son and breast fed him before I could do anything. He was breast fed for 13 months. I’ m so pleased I had the chance. It was emotionally hard knowing that once I stopped I had to have that surgery, but I dealt with it.
The decision to have first the genetic test, then the surgery has involved a lot of soul searching and fact gathering. My decisions were eventually speeded up by my mom getting secondries and my cousin getting breast cancer at 38. Suddenley it did seem something that might happen to me… Here are some opinions I have formed and things I have learnt along the way. These are only my opinions though.
Breast screening is too “hit and miss” . They can only tell you once you’ve got something. The tiniest breast cancer can be very aggressive.
Plastic surgery nowadays is marvellous. Get the right plastic surgeon and they can reconstruct you new breasts that look great with no dangerous material inside. They can even make you new nipples. Yes the surgery can be painful and it is inconvenient as time off work and childcare has to be arranged.
The type of reconstrction you have needs careful consideration. Implants only is simpler but the cosmetic results aren’t as good. Reconstruction off your stomach may make having more kids difficult . Reconstruction off the back means two separate ops.
Now I’ve had the op, I’ve no regrets. I did feel a bit tearful that I’ll never breast feed again, but then again I spent most of 2005 doing that and I’ll probably not have more kids.
The cosmetic results are great. It’s early days and I’m a bit sore and bruised still. It was a bit painful, but nothing that I couldn’t deal with. I can’t believe it took me so long to know I’d done the right thing.
I hope some of this will be of use. I scoured the internet before the op for women like me but never found any
Good luck let us know what happpens- it stands a big chance of being a negative result anyway doesn’t it - I 'll keep my fingers crossed for that!
Joolzcx
Hi Joolzc
Thank you so much for your lovely reply - it was really really helpful. Yes, our situations (to date anyway) are quite similar.
I agree with everything you’ve said - I too think screening is too hit and miss. If I test positive, I think I would find it too hard living with a time bomb that could go off anytime. And as you say, screening can only pick up something once caught - it doesn’t prevent or lower your risks. The ovarian issue concerns me the most as they say very often there are no symptoms until advanced. Do you mind me asking if you are thinking about an oophorectomy?
I’m trying not to think about this as a done deal. There’s every chance my results will be negative. But I feel I need to prepare myself just in case and that includes thinking about what I would do if were positive.
You say your mum got secondaries. How is she doing (and your cousin)? It’s so hard isn’t it, seeing your loved ones become unwell.
Re breast feeding. Well, I never really had the option as I had an inverted nipple correction aged 11 (severs your milk ducts). Breast feeding was never on the agenda for me. Although try telling that to my newborn as he was then. He certainly knew where to go!!! I did mourn for it for a while, so I kind of understand some of your feelings around that. I’ve also had a tummy tuck already, so my options for breast reconstruction are already reduced. I should have waited for my results shouldn’t I? I may have got it free on the NHS! 
Thanks again Joolzc. Good luck for your op next month. How are you feeling about that?
Bev.
xx
Hi Bev Hi Bev,
Hope you are ok. I can appreciate it must be a nerve wracking time while you wait for those results. Do always bear in mind that they stand a high chance of being negative and if they are positive you will deal with it- if I have anyone can!
I still have to find out more about the ovarian cancer issue. To date no one in my family has ever had ovarian cancer, whereas there is a strong history of breast cancer. I guess without having first hand experience of ovarian cancer in my family(thank God) it’s hard to take it on board. I realise that this doesn’t mean I can afford to be complacent as the fact is that this BRCA1 gene does increase my risks.
I need to do some research into ovarian screening, as it is possible I’ve heard to have a blood test that can indicate if there is a problem. I need to decide if ovarian screening can work before there is a problem, or if it is similar to breast screening where once they pick up a problem you’ve usually got something. I also need to find out at what age they’ll offer me screening. I’m sure my genetic speciallist said not before 35.
I don’t think I could at the moment get my head around an oopherectomy as well. If I can, if it is safe to, I’ll wait until the menopause. I might want more kids and I don’t fancy an early menopause. Who knows though- I mean it took me about 3 years to get my head around having a mastecomy! I was going to leave that til I was 40.
My mom is quite seriously ill at the moment and is battling liver, lung and bone secondries. She is on chemo at the moment and is fit so they can try all the drugs on her if these don’t work. She was diagnosed with breast cancer three and a half years ago (on my 27th birthday in fact) and it has been a long, hard fight for her ever since. My cousin and my moms cousin were also diagnosed around the same time. They do not have secondries.
I am really nervous about the next op which I have been told today will be in six weeks time. I hate all things medical- but I can’t wait to open my eyes on HDU look down and see my new breast and it will be a relief.
Take care and good luck
Joolzc
Hi Joolzc
Sorry it’s taken so long to reply. My results have come back positive unfortunately, which was quite a shock in the end. There’s so much to consider isn’t there?
It’s the ovarian issue that worries me the most - my auntie died in her early 30’s with ovarian cancer. Screening tends to only pick anything up once it’s in an advanced stage. I’ve had ovarian screening for the last 5 years - it involves an ultrasound (internal or external) and a blood test. It’s well recognised that it’s not that effective though. Although interestingly, the clinic in Manchester where my sister goes have offered her 4 monthly screening (whereas I get once a year). The advice she has been given (as I haven’t seen anyone yet to discuss specifics) is that you don’t have to worry about removing ovaries until nearer the age of 40. However, to be honest, I don’t think I can wait until then - the fear for me is too big. But I don’t relish menopause at my age either… It’s so difficult isn’t it?
Really sorry to hear about your mum - fingers crossed she keeps on winning her battle. How are you all coping?
Good luck with your operation - it won’t be too long now will it? Let us know how you get on.
Bev.
xxx
Hi Bev,
Sorry to hear about the positive result. It is hard- out of four of us in the family tested only I came back positive. It is easy to think why me? It’s not fair.
All you can do is look at things in a positive way. I think to myself aren’t I lucky to be in a position to make sure I never get breast or ovarian cancer. I could potentially live a long life and never have to deal with getting those cancers and all the heartache and uncertainty they bring.
I am pleased I choose to have the mastectomy and reconstruction- the results look good and it’s even capable of nice sensations -to my pleasant surprise. No regrets at all. My next op is in three weeks
Stay positive. If you do choose an oophrectomy they should be able to give you HRT to get rid of menopausal symptoms- shouldn’t they?
I have been told that having an oophrectomy reduces your chances of breast cancer too by 50%. Make sure you talk to your genetic specialist about these issues though and get all the facts.
Take care
Joolz