I have recently been indentified with the BRCA1 gene. I am just 30 and have two young children. I am finding it hard to be either happy or sad about it. I know that it is good that they have found it and that I can go ahead and have the preventative surgery, which is the best thing to do. I absolutely want to be here for my kids. But I still feel very strange about it all. Having everything removed, going into menopause at 30, have people wonder where my boobs have suddenly gone, because I wouldn’t have them reconstructed as big as they are now. Also how on earth I am going to look after my kids after I have had the surgery. What my hausband is going to think and feel afterwards. There are very few places to talk about it all, and on a page like this, I tend to feel a little pathetic and selfish when so many people have got cancer, and didn’t get any warning like me. I just wonder whether there is anyone out there going through the same thing as me, the same sort of age as me, and with babies to think about.
Hi lenfantmerredi
Welcome to the forums, here is the link to a factsheet published by Breast Cancer Care which may help you to understand more about familial breast cancer, you can read it online or download and print a copy:
breastcancercare.org.uk/docs/familial_breast_cancer
_updated_may_06_0.pdf
It sounds like you have a lot of issues to work through, please feel free to call our team of specialist nurses on the helpline for support and advice on 0808 800 6000, Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Sorry to hear your news.You most certainly are not being pathetic! You’ve been dealt a huge shock and so it’s only natural to feel confused and afraid, and in some ways grieve for the changes this will bring to your life. I was diagnosed as having the BRCA2 misprint several years ago when I was in my mid 40s-and that was a huge shock too, even although I had already lost one breast to cancer several years previously.
Since then several cousins-of a similair age to you, and my daughter (who was 22 at diagnosis), have also had the test and found that they too have the gene misprint. The closest to you in age, is my young cousin L. After much soul searching, she has decided to do nothing for the next few years, although will have whatever monitoring is appropriate. At some point in the future, she will have a bilateral mastectomy-but for the moment, although there are risks in delaying, they’re not too high, and she would rather wait until such time as the clinic deem it to be more pressing. Would this be an option for you? I have to say that my cousin’s genetic clinic have been first class in terms of support (as have ours), and I hope your’s too will be able to support and advise-as I’m sure they will.
I don’t want to intrude, but if you want to pm me and chat, then I’d be happy to listen. Good luck with whatever you decide at this difficult time.
Hi
I was put as high risk of BC despite not being BRCA 1 or 2 due to high incidence of breast and ovarian cancer in my family when I was age 37. My children are older than yours but at the time I was a single parent with 2 jobs and a horse to look after also.
I can fully sympathise with how you are feeling, including the guilt feelings with so many ladies that have been diagnosed and also the mixed emmotions of being grateful to be given the opportunity to prevent this awful disease but at the same time wishing I didnt even have to think about it… It was the hardest decision I have ever had to make. I found talking to a lady who had already made the decision to have preventative surgery, the most help to me. I kept her comments in my mind and also the thought that I may one day regret NOT having preventative surgery, but unlikely to regret having it done, if that makes sense.
I spent more than a year coming to the decision whether to go ahead or not, during which time I met an amazing man who has helped me through everything. I am now 3 months post my first mastectomy and recon and I am due to have second done next month, after which I will have my ovaries removed. To put yourself through major surgery when you are healthy is difficult but I am so relieved to have got part of the way through it.
Good luck in your decision and hope you find the help you need on here. Please post any more questions you may have.
Jackie.
hi guys
Cant sleep yet again so thought i would have a browse.I was going down the genetic test route as having fam history of Braca 1.Had app booked for oct 05 and got dx with BC in the aug.I was 34,great hubby,two small kids,job i loved.My world came crashing around me i had put it off for 2 yrs because of the kids etc.I am the youngest member of my fam to get dx.Nearly 3 yrs later i have had lumpectomy,lymph nodes rem,Chemo (lost all my hair)rads,ovaries rem,Double mast and recon from my tummy.It is a long hard slog with all that surgry especially with small kids.My only regret is that i had done it sooner than later.I am now 37,still got great hubby,still got the two kids just not as small,great job and just got promotion.Life stands still just for a while and then you move on.Got to go back to bed now have to be at work for 9.
lopez
Hi lenfantmerredi,
you are neither pathetic or selfish !!
its a big shock for you and thats understandable. i am on both sides of the fence, i have had bc twice at ages 38 and 43 and we now know due to genetic testing that my daughter who just turned 22 on 15th is carrying the brca1 gene.
she is a single mum of two little boys, one who will be 2 next week and a 3 year old.
she is due for surgery in june and will be in hosp over 25 miles away and will have to stay in for 10 - 12 days. we are a very close family and she has lots of support but of course are all dreading it. i will stay at hers with the boys but im not sure how they will be having to spend so much time away from their mum.
all anyone can do is try to look at it from a positive angle, the fact that she (hopefully) will never have to go through the dreaded bc and bc treatment.
im not sure of the technical term for it but she is having recon with the fat from her tummy and possibly implants so she will get a tummy tuck thrown in which she is very happy about.
she had her brca1 diagnosis in december and as i have said is due for surgery in salisbury (odstock hosp) in june so they have moved very quickly for her. she is planning to have an ohmphorectomy (think thats spelt right ?) but is going to wait till she reaches 30 as she would really like more children if she meets the right man 
keep your chin up and stay positive (thats all you can do)
love n hugs, dawn xx
Hi,
I would encourage you all, with h/o of genetic cancers to visit a comprehensive website , type ‘facing our risk’ in google. It has a large database of patients with genetic cancers.
Hi lenfantmercredi
I am 33 and brac1. I am so sorry you have a gene fault too.
I lost my sister to bc last year age 35 the end of march and after finding out she was brac1 end of july got tested. I found out in september that I too was brac1 and was fine but was very shocked when my surgeon said I needed to take action before starting our family. We got married in June and were trying for a family!
Anyway had my double mastectomy last New Years Eve and am doing great now! I recovered fast and the waiting for the op was the worst bit! I am having my ovaries removed after my family by 40.
I am not looking forward to early menopause but the positive thing is when all our friends are menapausal we will have gone through it and be radiant at 50 with the perkiest boobs!! I am not trying to make light of it all as it is a very hard decision and is very hard being a mutant but I have found that you just have to adapt to the situation and learn to accept it as best as we can! Some of us are lucky as we haven’t had cancer and have a chance to prevent it.
Try and keep positive It depends on your surgery choices for recovery time but I had tissue expanders and recovered pretty fast. I could have returned to work after 6 weekes but went back after 10 as I needed the rest emmotionally after all the events of 2007! Is your husband and family supportive? I think you will have to accept that you will have to take it easy for a while and accept all the help that you can with the kids! I was up and about straight away and was suprised how much I could do!
I have chatted to alot of ladies that have been through it all and we all have been extremely anxious and stresed when diagnosed and leading up to the operation but have been very releaved afterwards. I chat to a few who have little kids and are awaiting opson the other forum which I can’t mention the name of on here. They have had all the same worries as you. Sometimes they use this one too so you may chat to them soon.
I was all over the place before my op. My husband has been my rock through it all and the forums have supported me too.
Now I feel stronger, I have a different outlook on my life and what and who is important to me and so far some lovely round pretend boobs that look great! You will get through it all
Best of luck hun
Katie xxx
Hiya lenfantmercredi,
I am 32 and have a little girl of 2. I will be having a double mastectomy and recon with expanding implants for preventative reasons in 4 four weeks now (arghhhhh it is coming round so quickly).
Websites/forums like this are exactly for people like you and me who need somewhere to sound of, or ask questions. I do know what you mean about feeling guilty though, but that is why we have this section.
I don’t have a BRAC diagnosis, my risk is based purely on family history. Unfourtunetely none of my family who have been diagnosed with bc made it, so they didn’t have anyone to test against. Never the less I am pretty confident this is the right decision, I just can’t take the risk.
I don’t have much help around, and know it will be pretty stressfull for a short while. But my partner is very supportive and will be doing all the child duties for the first couple of weeks. I was originally talking to my surgeon about a different surgery option, but it was decided by all that at the moment implants are the best solution for me, because they are the quickest operation, with the quickest recovery time, and the least destructructive physically. I have the option of a more natural surgery further down the line when I have finished my family.
It was decided that my only risk factor was in my breasts, so can’t tell you much about the other operation. Other than I hadn’t thought ovaries were a concern for women with high risk until around 40. I would get some further clarification on this, maybe they could just screen you for this more now??? These two operations would be alot to take on in one go, especially with two small children.
The ladies on this helpline are lovely, and I have felt much better once I got some clarification. Hope this helps and you are not getting too stressed about all this. Try and focus on the positive and that you are getting the option to choose to aviod BC.
take care
Carol
x