BRCA1 mutation

I don't think anyone welcomes the news that they need to have bilateral mastectomies and ooph surgery. But it can save your life. There are several women posting in the mets forum who can testify to the advisability of treating this risk aggressively.

Learn more about your BRCA status by reading the FORCE site:

http://www.facingourrisk.org/

Lisa (BRCA1+)

ps - blueidblonde, congrats on being 4+ years out!

It is a very personal decision...

The way I look at it, is that with an hysterectomy done, you aren't planning to have more children. In that light - taking out the ovaries is quite a large risk management step, especially as monitoring the ovaries for cancer is almost impossible (it is usually discovered only too late, after it has spread), because it has no symptoms and isn't visible on ultrasounds. So if you don't do it, the risk is pretty high.

On the other hand, if you do it, you may have menopause symptoms... but you will have them sooner or later, anyway. This is sooner, yes - but after a bit of time it will all have boiled down, and it will increase your chances to go through a peaceful and long life...

Just my 2 cents.

It sounds like the jury is still out (according to the editorial), but I'm just guessing - would they be concerned about estrogen stimulation for a potential future, 2nd primary?

Hi there, I am new to this site.  I am 40 with two boys (10 & 7).  Live in Canada.  I was diagnosed with breast cancer at the end of March 2008.  At that time I was going to have a lumpectomy but 1 week before my surgery I found out that I was BRCA1 positive.  Unfortunately it took six months for a diagnosis of DCIS stage 3 by biopsy as the lesion presented atypically.   I was sort of lucky that the ultrasound technician thought she saw something because the next 3 attempted ultrasound guided biopsies couldn't find it.  Took MRI to find it and then finally MRI biopsy.  So, because of this I decided to change my surgery from lumpectomy to mastectomy. I had the surgery in April this year. I have gone through chemo (AC/T) and no rads.  The chemo has already put me in menopause (oh joy! ). 

 I have decided that I really don't want to go through with chemo again if I can help it, so I have decided to have prophylactic surgeries done (hysterectomy/oophorectomy and right sided mastectomy with reconstruction.  I know that this will not guarantee a recurrence but it will lessen the chances!@!  

 I am also triple negative so have been advised against the use of the hormone treatments.  From what I understand it is because the hormone will actually encourage the breast cancer to occur.

My mother had a radical bilateral mastectomy when she was 31 (about 35 years ago).  At that time they didn't have chemo, just radiation.  She had a recurrence 2 years ago in her right axilla.  She has gone through chemo again and is now free.  She never had follow up checks after the mastectomy, no U/S and she didn't check herself until she found the large lump in her axilla.

 Even though there is a chance of recurrence, I have come to the conclusion that for me this is the right decision. It has taken a lot of soul searching to make my decision and I am still not sure it is the best, but whatever I can do to make sure I am around for my kids, I am going to do it no matter what!

Good luck with your own decision.  Hope this helps.

this is my first post. i am a nervous wreck and i would appreciate any help. i was diagnosed with stage 0 dcis in sept and then after an mri it was changed to idc in october. i'm now stage 1 but i have not had excisional surgery yet. i'm 49 and my 51 year old sister was diagnosed with stage 3 in august. she is undergoing chemo and has opted for a bilateral mastectomy. i also have 3 aunts with bc so i decided to test for the brca mutation and i am waiting for the results. should i go ahead with the lumpectomy now or wait for the results and go with the bilateral? i'm also considering a bilateral even if it's negative because i don't think i could go through with another positive bc diagnosis in 2 years. help!!

I am 45 years old - BRCA1 positive.  Mother died of bc at 38 years of age, Sister diagnosed in October of 2007 invasive ductal carcinoma.  When I heard my sister had bc, I opted for both oopherectomy  (had this in january of '08) and double prophylactic mastectomies (may '08).  I had breast reconstruction and just recently had my nipples created.  I will go in about 3 weeks to have my areola's tattooed.  As far as menopause goes - yes, there are some symptoms - the biggest one for me is the loss of interest in sex - However, I am alive and my husband and I love each other very much and there are many ways to be sexual with each other.  My mother is not here to see her grandchildren grow up.  I want to be here to see mine.  I want to be here for my children.  Everyday that goes by, I get stronger and healthier and know I made the right choice.

I'm a Canadian, BRCA2, ER+ and a 10-year breast cancer survivor who went into surgical menopause at age 41.  I was outright refused hormone replacement, even a weaning off amount, and for me the longterm ramifications have been pronounced.  It took me two years of verbally challenging my onc to give me some form of HRT, especially to ease my memory and energy issues (flat adrenals that have long been overcompensating for estrogen/progesterone deficiencies).  I tried a couple of different kinds of estrogen (Estrogel pump and Climara patch) but found them to be of limited help.  I suspect it's because they're a general hormone fix versus and blood tested, true balancing match (and lacked the tempering and complementary effects of progesterone).

The equation for figuring out one's best treatment plan is complicated.  We have similarities and yet we also have complex differences.  It's not an easy road to negotiate at times.  I have one BRCA friend who had five top-notch oncologists give her five quite different modes of treatment for her advanced ovarian cancer.  Fortunately, the method she chose put her into remission.  At least one other would have been the end of her.  I have another good BRCA1 friend here in Vancouver who was diagnosed at 32 with Stage 1 breast cancer and 12 years later, while still having both her breasts and ovaries, is thriving.  That is, on her full load of normal estrogen/progesterone.  She also had a child during that time.  I'm in awe of this as I think she has beaten sizeable odds, but am not sure I could live with that risk level but she can and does.

For me, along with having undertaken significant exercise and diet changes (no sugar, exenoestrogens etc), with the memory difficulties and adrenal challenges I've had, I have decided to go the route of bio-identical estrogen and progesterone.  This includes careful bloodwork testing, and low dose hormone balancing.  This is actually protective against, an even greater killer than breast cancer, heart disease.  And there are other protective qualities to nominal BHRT which are just beginning to come to light and this includes an element of protection against breast cancer for some.

I do understand that there is a greater risk of ovarian cancer with BRCA1 than my BRCA2 but something I had to factor in to my prophylactic decision making was that my paternal grandmother died of ovarian cancer at age 34 and her daughter was diagnosed with the same at age 36.  My maternal grandmother died of ovarian cancer at age 51 and her sister from the same at age 56 just nine months prior.  I was pretty fearful of ovarian cancer but, in retrospect, for me, I would still have taken nominal BHRT at the time of my oophorectomy and continued until at least menopause, along with my continued healthy diet and exercise, if I'd only been given the chance.  I have finally been able to slowly but surely make mine, and hope I can reverse some of the consequences of longterm (protective) hormone deficiency.

(Marlina, the percentage of getting these cancers is definitely higher with BRCA+, but no it is not a 100% certainty.)