I’ve just signed up for this site, as recommended by the MacMillan Counsellor.
I’m 37, and have recently been tested positive for the BRCA2 mutation. My mother had breast cancer aged 50, and is absolutely fine now at 72. She was tested last year as part of a research study, and was positive. Her sister (71) is also positive and has had no cancers. Their mother died aged 35 from breast cancer in both breasts. There is only one known ovarian cancer on that side of the family (my grandmother’s sister).
At present I’m a little unsure what to do. I have 2 children, with no plans to have any more, and I have no great love of my breasts. Weight fluctuations and pregnancies etc, and they are just there. That’s about all I can say about them.
I *think* I will have both the double mastectomy and the ovary removal. If I do, what order should I have them in? Can I ask what others have done?
DD have you had an appointment to see any surgeons yet? Some will have set ideas on what order to have surgery… I know one girls who had to have the mx before having the oophorectomy as the gynaecologist only said he would do it after her other surgery… Not sure why really as there isn’t any evidence that doing it in a set order is any better than the other way round.
Breast cancer risk is higher at a younger age than ovarian Risk so that’s maybe a reason to have mastectomies first… Im a brca 2 carrier and had breast cancer first at age 37 and then again 3 years later I had it in other side and now 2 years later iv had a recurrence… I hadn’t had mastectomy but was planning on doing it next yr but go this recurrence before I got the chance and the mx will be delayed now while I under treatment and monitoring for a while.
I had a hyst and oophorectomy last year at 42 after I discovered that the ov ca in my family occurred in early 40s… This is quite unusual in brca 2 as the average age for ov ca is early 60s but average age for BC is early 40s.
There are loads of options with regards to surgery, both gynae and breast surgery so it’s best to get a referral to a PS and gynae to discuss it fully with each.
I haven’t seen a surgeon yet. I turned down the offer to see one as I still wasn’t sure what I wanted to do, if anything. It was a bit too soon. I am seeing the family history nurse in December so I’m planning to ask her to get it all moving.
I’m thinking mastectomies first, as like you said, that’s my greater risk.
You can see the surgeon any time just for a chat you do not need to proceed with surgery until you are ready, some women choose not to have any surgery and prefer to continue with screening it’s a very personal choice but it’s good to have the information… Also check brca umbrella website they have lost of before and after pics and are real friendly bunch.
Hi DD
I am a BRCA1 carrier and have just had a double mastectomy and reconstruction 5 weeks ago. I am a little younger than you at 31 but felt like lulu said that that was the biggest risk. The hardest bit is over and I am fine. Talk to a surgeon, they don’t rush you at all but give you all the information on the various ways of doing it. I have two children too and they have coped well with everything that is going on. I will have my ovaries and tubes removed in a few years as they don’t want to do it until I am a bit older. Hope this helps in someway x
Hi I found out just over 2 years ago I have the faulty BRCA2 gene. I had an oophorectomy when I was 39 in October last year. I haven’t got an actual date yet but I should be having a double mastectomy and reconstruction early next year. I saw the plastic surgeon again a couple of weeks ago and he said it will probably be February.
Best wishes!
Debra x
Hi ladies,i had breast cancer at the begining of last year,i had a lumpectomy and full node clearance ,i was 45,i had chemo,then rads and arimidex.my cancer was only discovered as i was having yearly mammos due to the strong family history of bc,i discovered at the end of last year that i was a brca2carrier,to cut a long storey short i have just had a double mx with expander implants,last week,and i can honestly say i think i made the right decision,i have looked in the mirror and thought,how good things look after only a week,i honestly never imagined that i would feel good already,i was a 36dd,at the mo i am probably a 36b ,i have no nipples,but i still feel so much better than what i imagined i would feel,its early days for me,but i feel good about things,i cant believe it!!! I realise lots of people may not be as fortunate as me,but i had to let u know how i have not had a bad experience,hope all goes well for you all,sandrae x
I’m new to this and just done my first posting but saw your comment and thought I’d share. I’ve got Brca 2 and I’m 33. Like you I lost my grandmother when she was 34yrs (I of course never knew her). Due to the age of women in my family getting breast cancer (4 women in total) I’m planning to have the risk reducing bi mag this year and
I’ve been advised to have ovaries and tubes out at 45 yrs.
I’m yet to understand the type of reconstruction…am I the only one that finds it a bit confusing?!.. I’m sure when I speak to a surgeon it will all become clearer.