I have recently been diagnosed with the BRAC 2 gene and have already decided that I want my ovaries removed. I am 42 and have 3 children, so fertility is not an issue for me. My onc said yesterday that BRAC 2 carriers are at a higher risk of getting ovarian cancer than BRAC 1.
I think I want another mx (had left mx in march this year) but I’m not sure. I have done some research on the net, but some of the information seems contradictory. So basically I’m a little confused and would like some advice and experiences please.
Hi
Sorry to hear your news, not sure what advice I could give you, but thought I’d tell you our experiences.
My two sisters and I discovered we were BRAC2 towards the end of 2007, six months after my dx. My middle sister had bc 13 years previous to this at age 29 and my youngest sister was dx this year in one breast
My middle sister had mastectomy, and after discovering ths faulty gene had other breast removed and ovaries. My youngest sister has now had double mastectomy (as BRCA2), immediate recon and is having her ovaries removed soon. I had my ovaries removed only as I have secondaries, I was advised as monitored so closely any change would be picked up quickly.
Have you been back in touch with genetics? They maybe able to give you more advice.
Take care
hi cat
your onc must be a little confused as brca 1 carriers have a higher risk of ovarian cancer than brca 2… brca 1 is about 60% lifetime risk and brca 2 is around 20% lifetime risk… this still much higher than the general population risk and because there isnt any reliable screening for ovarian cancer you are normally offered removal of your ovaries and fallopean tubes.
i had a hysterectomy and BSO about 10 weeks ago as a brca 2 carrier.
iv had bilateral breast cancer but not had mastectomy just lumpectomy and currently considering what to do next… very undecided whether to have a bilateral Mx or just continue with increased screening.
not making any rash decisions and have delayed the surgery for at least 6 months while i recover from my hysterectomy.
i would recommend an appointment with genetics especially as it appears your onc is giving you duff info.
Lxx
Hi there Ladies, i also found out this week that i carry thr brac2 gene mutation, i have decided to go ahead with a double mx and recon, also removal of one ovary which was left after i had a hysterectomy when i was 28. I am waiting to see my breast surgeon, i would love to here other ladies experiences of risk reducing surgery for bc.Any advice would be helpful, both physical and emotional advice please.Lulu, i hope your recovery is going as well as is possible.Take care Sandrae
Hi, I too have BRCA2 gene diagnosis. Cancelled first op for oopherectomy and salpin… after reading up on horror stories on internet. Should have gone directly to this site, much more mind settling to hear good and bad stories. I have also spoken to a few people who have had ovaries removed with no HRT and am now convinced it is the right thing to do. I currently use Ladycare magnet for menopausal symptoms as just starting to go through it anyway. Have recently had mastectomy and reconstruction after dx breast cancer but breast surgeon agreed I could wait 2 years before mastectomy and recon on other side as I just don’t feel ready to go there again yet, only just starting to lay on left side. My biggest worries with oopherectomy were being plunged into a deep depression but there are tablets to help with this so I am ready now. My advice would be to get as much information as possible and ask lots of questions. Lets face it the menopause wont kill us, but cancer might!
Hi,
Can I jump in and ask a question?
Was there a reason you were tested for the gene? I’ve had BC this year but when I asked about a test they said they dont routinely do it.
thanks,
Naomi
Hi Naomi, I am being tested, i think they test when close family members have had Breast and Ovarian cancer,in my case my grandmother and my aunt both had it. All the best, Elaine x
nem in order to be gene tested you normally have to have a significant family history, have a known gene mutation in your family or come from Ashkenazi Jewish descent.
for people who have a known gene in their family they can be offered a predictive test which looks for that specific gene change in yourself.
for people from Jewish descent they can test for the 3 main gene mutations known to occur in Jewish families.
for people with a significant family history you get points for each type of cancer and the age of onset… normally you would need to have 20 points or more to qualify for testing.
not everybody wants to be gene tested even if they fit the criteria some people dont want live with the worry, guilt, fear, etc that finding out they have an altered gene… on the other hand some people would like to know so they and their family can have risk reducing surgery or more intensive screening… it is a very individual choice.
if your concerned at all you can ask to be referred to the genetics service who can look into your specific case in more detail.
nanny… thanks for your good wishes… i feel absolutely grand now and pretty much back to my old self.
still waiting to decide about the double Mx which iv postponed til next year.
cantkeepmedown… hope you wont find you get too many symptoms from your ooph… iv not really had any deep depressions or even had any altered mood at all… just been consulting the family in case i was deluded LOL, but they agree that im pretty much the same moodwise… my main problem is with hot flushes which are quite mental but not life threatening.
Lulu x
Hi although Im BRCA1 still wanted to post. I was told potential to have gene but noone to test so after I go bc i wanted tested for all the family… had 1 mastectomy at 35 and then later that year after chemo and rads had ooph… to be honest i went into it really worked up about what i was doing and what might come afterwards and although I ache and do get some hot flushes it wanst as bad as i expected.
Good luck, Im heading towards my second mastectomy and double recon xxx