I would like to hear from anyone out there whose been in a similar position to me and may be able to offer some advice.
I lost my mother to ovarian cancer nearly 38 years ago when I was 12, she was 51. Aware that there may be some genetic link, my sister and I decided to go for regular screening when it was discovered that my sister at the age of roughly 40 also had ovarian cancer, fortunately it was caught early and she is now completely cured.
We then went for genetic counselling and discovered we both had the BRACA 1 gene. Several years ago my sister then took the decision to have a double mastectomy, I in the mean time have had MRI scans and mammography twice a year which has been fine up till now.
I have now been told that once I reach 50 this will stop and I can only have screening once every 18 months. I am little concerned because although I’ve been assured my risk of getting breast cancer has dropped slightly, it is still higher than the general population.
I am consequently unsure what action to take, whether to go for a risk reducing mastectomy, or pay privately for screening which of course doesn’t detect cancer unless you have already contracted it.
Could anyone please advise me on what to do? Thanks.
Hi icecreamdream
Firstly welcome to the Breast Cancer Care discussion forums, I am sorry to read you’re having a difficult time at the. I’m sure some of the others users will be along soon to offer your their support and experience.
In the meantime you may find it helpful to talk things through with a member of our helpline staff, who are there to offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
Hi Icecreamdream
sorry to read your story… Unfortunateky nobody else can tell you what you should do as its a very personal decision… You might find the ICR protocols on brca 1 and 2 mutation carriers helpful in determining yoru possible risk although your geneticist will be able to give you a more accurate personal risk…
http://www.icr.ac.uk/research/team\_leaders/Rahman\_Nazneen/Rahman\_Nazneen\_Protocols/Protocols/18708.pdf
although the risk goes down slightly at 50 its not uncommon for BRCA carriers to get BC in their 50s, the risk does drop quite a bit after 60 and the screening will normally revert three yearly at this stage if you live in england or wales.
you have to do whats right for you… no two people are alike and we all have our own personal experiences and lifestyle factors which influence our decisions… You have to make the best choice you can live with.
Best of luck
lulu xxx
Hi icecreamdream,
i am a braca2 gene carrier and was told after i had already been dxd with breast cancer at the age of 44, just like my mum, her mum and two aunts.
My mum was also brac2 but for her it was to late, she had breast cancer at the age of 44 also again 15 years later.
I had a wle and node removal 3 years ago,also chemo and radiotherapy.
I then found out i had the braca2 gene and decided to have a bilateral mx with expander implants and also to remove an ovary{ as i had a hysterectomy when i was 29,not cancer related}.
For me, i am so much happier knowing my risk is grateley reduced.
I really do feel for you, and yes only you will know what is right for you, reconstructive surgery has given me the confidence again, and i actually forget i have reconstructive breasts .
sorry i wanted to add that ,i never felt the cancerous lump that i had, it was found on a familial mammogramme programme,it was also found in my lymph nodes,i was just lucky it was seen on the scan before it was to late.
hello, I lost my mum when I was 26 and she was 54, I now know I have inherited brca 1, I’m going ahead with surgery this year…it was ovarian cancer with my mum too and so many woman in my family… scared and confused about op x