BRCA1!

Hi I have just recently found out that I have inherited the faulty brca1 gene. I went to a genetics clinic last week to meet with a member of the breast team and see a genetic councillor. I am finding it extremely overwhelming. I want to have preventative mastectomies and reconstruction. I have 2 boys age 7 and 3. I would be very grateful to hear from anyone who has had preventative surgery with Brca1 as I dont know anyone who has done this. Thank you .

I haven’t, but bumping it up as there have been a couple of threads on this recently.

I would read old threads but where doni find them? Thanks for bumping me up I need to talk to someone x

hi strawberry shortcake

is your genetic team referring you to discuss these issues with a surgeon? our genetic ladies go for a counselling discussion with a psychologist and breast care nurse and afterwards are referred to discuss all the options with a surgeon if they wish to go ahead with surgery.

i have a brca2 gene and will be having mastectomies at some point but my situation is slightly different from you in that i have had breast cancer twice already, but had lumpectomy to both breasts.

i had a hysterectomy and bilat salpingo-oophorectomy (ovaries and tubes removed) last sept to lower my ovarian cancer risk.

theres a good website called brca umbrella (you can google it) for people with mutations and you can speak to others in the same boat and discuss surgeries and even see before and after photos.

take care

Lulu xx

Hi Strawberry Shortcake

Welcome to the forums, I hope you are finding them a great source of support and information.

If you are interested in reading some of the other threads, there are some in the ‘Family history and genetics’ section, which you have posted in.

Also if you would like to talk things through with somone please do give the BCC helpline a call as here you are able to share your concerns with a trained member of staff who will offer you emotional support as well as practical information. The number to call is 0808 800 6000 and the lines are open weekdays 9 to 5pm and Saturdays 9 to 3pm.

Best wishes Sam, BCC Facilitator

Hi there,
I was diagnosed with a BRCA1 mutation in May, this was a year after I finished treatment for breast cancer, so our situations are a little different. I have seen my breast surgeon, gynaecologist and just went back to see my GP as their views on the risk and how to manage them differ from the advice of the genetics unit. I have a daughter aged 4. I felt very overwhelmed and only in last few weeks managed to feel that I have regained some sense of equilibrium. I am weighing up options at this stage. I think it is important not to rush any decision-making and accept that this is a process of working out what to do what is right for you.

Lulu is very knowledgeable (hope you dont mind me saying!) as well as the umberella org. there is the hereditary breast cancer helpline who I think will put you in touch with women living near you who would be willing to talk about their experiences.
Tel: 01629 813000 (available 24 hours)
Email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%63%61%6e%68%65%6c%70%40%62%74%6f%70%65%6e%77%6f%72%6c%64%2e%63%6f%6d%22%3e%63%61%6e%68%65%6c%70%40%62%74%6f%70%65%6e%77%6f%72%6c%64%2e%63%6f%6d%3c%2f%61%3e%27%29%3b’))</script>

Rattles, xx

Hi Lulu
Thanks for your reply. I have been referred to a surgeon who will refer me on to a breast care nurse and a psycologist, which seems to be the other way around. I do plan to have the BSO at a later date as i am 31 it is too soon to do it yet. I have had a look in the archives and there were some stories whhich were helpful to read.
Thanks for your advice about the brca umbrella site xx

HI Rattles
it is so hard to decide what is the best thing to do for you and when and considering families and little ones. I have not known for very long so i know i need more time to digest this all. I am lucky to find that my sister does not carry the gene too which is good. Thanks for your advice too xx

strawberry shortcake its good your sister doesnt have the gene… my sister doesnt have it either and that was really good news for her… although she had decided she would have surgery if it had come back positive.

my has had breast cancer but doesnt have the gene as its come down my dads side and we dont have any family history of breast cancer… so we are a pretty unusual family.

i hope your surgeon helps you make some sense of your options… i am still so undecided about the surgery but think for me its a toss up between implants with strattice or with LD flap… i have friends who have had both and the ladies who have had the LD flaps dont look any different so i think im starting to sway towards that even though its bigger surgery.

and rattles thanks xx

Lxx