Just found out I have BRCA1 gene

Genetic test result came back last week and I have the BRCA1 gene. I am finding it extremely difficult to cope with this. Had breast cancer in 2005 (aged 30)and in some respects myself and my husband are finding this more difficult to deal with. I haven’t been into work since finding out and family members are definately awkward around me. Feel like locking myself away or just getting into my car and driving as far away as possible. Only thing stopping me from doing so is my 3 year old son and my husband.

I felt like my life was just getting back on track after the breast cancer; starting a new job, considering having more children etc. and now the ‘rugs been pulled out from under me’. I’m trying to digest the info I’ve been given but I can’t. Where do I start? It’s all a minefield.

Any tips, advice or words of wisdom would be really appreciated.

Thanks
Maccy

(sorry for the less than uplifting (to say the least) post)

maccy, your feelings are 100% normal i am brca2 positive and i understand how you feel. i found out almost 2 years ago, i had ovaries out in aug and breast op is in feb. i honestly felt suicidal too again i have 2 kids and they kept me going. i often woke up after having nightmares about it screaming. on many occasion i would look around wondering what i could do to end it all. i felt a failure and believed if i did attempt suicide i would prob fail at that. please please believe me but when i say it will get better. it will always be there but it gets easier. i wish you knew how bad i was compared to now. i have not taken pills to help with depression as they are not needed and am a comfortable happy person. my advise would be talk,talk and talk more. ask any questions you want. i promise through time you will get your head around it. lots of love lainey xxxxxxx

Dear Maccy

I am sorry to read that you are having such a difficult time at the moment, you are very welcome to call our helpline on 0808 800 6000, Monday to Friday 9am-5pm and Saturday 9am-2pm. You may also be interested in the National Hereditary Breast Cancer Helpline, their number is 01629 813000, the link to the website is:

breastcancergenetics.co.uk/

Best wishes
Lucy

Maccy-you don’t have to be uplifting! Your feelings of horror and despair are perfectly natural. I was older than you when diagnosed with BRCA2, but remember well the feelings of despair, anger-and guilt. But there are some positives in this sorry mess. Now you know that you have the gene misprint, you will be monitored carefully, and offered prophylactic surgery at a time that suits you. In many ways, you remind me of one of my younger cousins who also has the gene misprint. She was a year or two older than you, but decided in the short term to do nothing. In a cruel trick of fate, her gene test came back when she was several months pregnant with her second child, so in many ways, this provided a more positive and happy focus for her. She has decided though, in the next few years to have the prophylactic surgery, so she’s moving forward all the time. It will get better-take comfort if you can, from the huge amount of progress that has been made in this field too.You will be strong again,xx

Maccy
I remember how I felt when I found out I was BRCA2 +. I might as well have been told I had cancer I felt so bad. For a week I didnt eat, couldnt sleep, couldnt work, and just cried most of the time. I was a hospital-phobic and so the thought of prophylactic surgery was petrifying.
After a week I rang my genetics counsellor and told her I had gone to pieces. She reassured me it was a totally normal way of coping with such shocking news, and that it will get better with time. Of course I didnt believe her!!
After the week of panic and fear, with her encouragement and support I started to “take action” - often just small things like finding out where I could get support from, what was going to happen next etc. I made lists of people in my locality that might help - cancer charities (they offer help for gene people more and more now), counselling services through my GP, who my consultant surgeon was going to be - being on my surgeon’s books would mean a quick referral if I had any problems. That felt a bit more like I was taking some control back of my future.
I also made notes of “normal” things I had achieved since the test result - going to a friends’ daughter’s birthday party about 2 weeks after was very important as she is a dear friend - and I managed this and noted it down to remind myself later that I can have a normal life.Your child should help you with this!
Family were a bit difficult - my test result came less than 6 months after my sister had died of breast cancer, and both my parents were devasted, and frankly, not much support to me - my father also had terrible guilt as it had come down his side of the family. But then again, friends who I knew fairly well suddenly became very caring and surprised me.
All that was about 2 years ago. I took 6 months to decide to have prophylactic surgery, and another 6 months to fit it into my study and work schedule. On the 20 th Nov last year this hospital-phobic went (voluntarily) to Hospital to have oopherectomy and bilat mastectomy and immediate reconstruction.
My genetics counsellor was totally right - it gets better with time - but you just have to wait, take each day at a time, and try to see the positive in that you know your risk level and can choose what you do about it - but there is no immediate rush - let yourself accept what you have just found out, and plan to take small actions as soon as you feel able.
my very best wishes to you, and post or PM if you need more help.
You are not alone maccy
Jane

Janew5

I found your post very interesting. If you don’t mind could you give me a brief run-down of what to expect with the surgery that you had as it looks like this might soon be an option for me.

Thanks,
Jane
x

Hi Jane
I realise that different surgeons, and different parts of the country, offer slight variations on what is available to their patients, but I am happy to tell you what my surgery was like. Not sure how much detail you want, but feel free to ask any questions you wish once you’ve read it.

my oopherectomy was done by my gynae surgeon first. Very simple, keyhole, 4 small scars, barely noticed it.
Then my breast surgeon and her team moved into theatre. Overall I was in theatre for five and a half hours.
I was previously large-breasted (EE/F cup), so my surgery was fairly extensive compared to some (if you r below a B/C cup, you may find your surgeon does far less invasive surgery, and your original breast “envelope” is retained). My surgeon also removed the nipples (large breasts means retaining the nipples is difficult because they end up in the wrong place! and my surgeon doesnt like the bc risk that nipples present).
My breast surgery began similar to a breast reduction - W-shaped incision - but then all the breast tissue is removed - and I had expanding implants inserted behing my chest muscles into a breast envelope made from remaining skin. Where the envelope is stiched back up, my surgeon also created a nipple-shaped “scar” on each one, which is the basis for my nipple recon. (I have since had these tattooed and they look good).
After a few weeks the implants had regular doses of saline injected to stretch the muscle and skin to a B/C cup.
My hot flushes began after about 5 days, and quite frankly were unbearable - the lack of sleep from the night sweats, combined with discomfort from having to sleep on my back at first, drove me to the docs! My GP refused me HRT until 3 months after the op (risk of DVT), but then put me on Tibolone - recommended for BRCA women as its steroid-based, not hormone-based. that has been very effective.

I am very pleased with my results, but I have a friend who had the same op as me yesterday, and recently she asked if she could look at my breasts to see what she was letting herself in for - very understandable last minute nerves! she was pleasantly surprised by my end result - which I think says more than I could ever say about it.

I am very positive about it, but I have spoken to women who had infections, poor surgery, and other issues. There is much emotional turmoil after the operation, and intimate relationships are tested - mine has ended up very strong - but there are times when I want reassurance that I am still attractive. But for me these are small concerns compared to those of the many women who have cancer.

I dont envy you having to make all these decisions, if I can give any other info, do ask.
best wishes
Jane

Jane
You are brilliant to answer so fully - that was exactly what I wanted to know. I’m another Jane with big boobs so we are alike in a few ways! I’m also wondering how much time off work would be necessary?
Jane
x

Hi Jane
I was very lucky that my workplace was very supportive and allowed me a lot of time off work, and a very gradual re-introduction to work. I know many people who go back far sooner than me, but it is incredibly tiring - especially as I went through the menopause at the same time. I will be honest and say that being menopausal as well probably lengthened my recovery quite a bit.
In all, I had the op at the end of November, and was off until the following Feb - but tried to do too much too soon and went off again after two weeks trying to do 5 hours aday. I then had another month off and tried again in the late march - this time doing two mornings aweek, then 3 mornings aweek, then four etc , then 2 full days, then 3 full days and so on. I then had so much holiday to use up that I didnt actually return to work full time until Sept. But now am fully fit!!
hope this helps
Jane

Sorry to but in but the info is fab, have bc, just finished treatment had had one masectomy, major baby but as just found out have brca1 gene, thinking of another masectomy and recon which scared me majorly!
x

Lisa
you are welcome to but in!
you seem to be calling yourself a major baby, but what you have been through already seems to contradict that. I dont know as much about BRCA1, but I think there are similarities, but at different risk levels. If I can be of help then please get in touch. best wishes. Jane

Thanks Jane, maybe baby is wrong word but you have to do chemo and things its not brave a necessity, I think cos recon is of my own wish makes it scary but thanks for all the advice above. Will start looking into things in the next few weeks.
x

Hi,

I have been told that i prob have the brca2 gene dont have the results back yet. I was 22 at dx and was told that i shuldnt have my ovaries removed till my late 40’s! I was also told that i shouldnt worry about having more children and that isnt a problem if i do but i should just make sure that i have more kids before im 40.

Has everybody else been told not to have children? Im now quite concerned, anyones imput would be appreciated!

Hope that everybody starts to feel a little bit better…its sooo hard to cope with!

Emily

xx

emily i tested positive for brca2 only 2 years ago and by that time already had my little ones. i cant help it but feel guilty that i may have passed this onto them as now it’s 50/50 and would hate for my daughter who is now 11 to have to make a decision on a mastectomy. this is my opinion only we decided against a 3rd baby as i would hate to have had another then posiibly pass this gene on knowingly. i know there is so much they can do now including screen for faults but i think they hear all too often about parents feeling guilty this is my opinion only. research is coming on amazing into genetics even in 2 short years it has came on a great deal. but it may be that’s why they are asking you wait to results are back as if u are brca positive u may also feel diff about more kids.
emily it is so hard to deal with but you aren’t alone
i get my date tomorrow for mast which they are planning for jan and im very scared but am aware im also lucky i don’t have cancer love lainey xx