Waiting for BRCA1/BRCA2 results. Advice on Oophorectomy

Still waiting on my brac results been 4 weeks

I have similar stats as you. My first cancer in 1999 at 41 and again in 2008 at 50. The Brac test was offered, but i knew my chances of the test being positive were slim so I declined. BS agreed with my decision. The GYN is fine with it too as long as I go for checkups every 1-2 years. Onc ok with it too.  I'd rather have all my natural parts for as long as possible. I don't take surgery lightly.

Just had an interesting session with genetic counselor, a referral from my MO.  I am 55, Ashkenazi Jewish, me with bilateral dx in July, a far cousin died of male breast cancer- she said those are enough to do the BRCA test, the smaller panel that searches the 3 parts of the jewish angle....If I come back negative she didnt think there would be a need for a full test, but would try and push for insurance to cover it if I wanted. There are specific criteria out there for who should/qualify for testing for the mutation.  Im concerned for my ovaries now. If its positive I go (or we all go) from the general population 2% chance of ovarian cancer to 20-40%. Id get mine out for sure. Also would let my siblings and daughter know of their 50% chance of carrying the mutation.

She didnt think if I came back negative Id need oophorectomy (sp), but said she understands those who just want them out because they already had the one kind of cancer.

I have not had BC, but am high risk, and an uninformative negative. If your BRCA test comes back negative, what you/your medical providers would do is consider your family history and personal circumstances. For example, there are no known ovarian cancer cases in my family so I am not considered to be at any higher risk of ovarian cancer than the average, nor have I ever had a problem with cysts, etc, and an oopherectomy has generally not been recommended. I also took the birth control pill for many years (which while I now worry about increasing my risk for BC, it DOES reduce risk of OC rather significantly). I am still far away from menopause, but ovaries do have benefits even after menopause so this is something you really need to evaluate yourself.

My mother, who was dx at 48 with Stage 3, ILC, ER+/PR+/HER- 19/20 nodes, is now 56 and still has her ovaries. She is on Tamoxifen though. She is BRCA-negative and we assume her mother and two maternal grandmothers likely were as well (all who also had BC). She is glad to have kept her ovaries, etc, even though she is now in menopause.

I do know some BRCA-negatives (uninformed ones) who have had oopherectomies based on their own family history. I believe LISAMG, another uninformed negative previvor, is one of them. I seem to recall she had a relative or two who had OC.

Of course, if your test comes back positive, then as BRCA1 your risk can be around 40%, if BRCA2 it is closer to 11%. This of course can vary a lot on the mutation and the family history. The average population's risk is 2%.

Of course, some women also remove ovaries to reduce risk of BC or recurrence. For BRCA+ women, an oopherectomy can reduce risk of first BC by 50% (the impact is more on hormone-positive cancer in this I believe). Removal for BRCA+ is usually recommended after childbearing is complete, or at around 35-40. Some do wait until natural menopause, though, but I think the benefits do change. If you are positive or negative, there are models you can run to see what the benefit may or may not be of oopherectomy, pbmx, etc at different ages (I believe it is on Stanford site).

Does that mean you believe you may have the BRCA1 gene?? More power to you all who are getting tested for the gene and don't even have BC - I just did the preventative route before I was diagnosed and only got tested for the gene after I knew I had cancer to help my family but no one in my family wants to do the testing. Frankly I can not hold it against them. Most days I wish I didn't know because the Dr.s' treat me differently than the did the first time I had cancer.

Orange73 it is your body and your decision. No one can take your organs or body parts without your consent. I am BRCA2 positive and we have a lesser chance of ovarian cancer than the BRCA1 mutation. At this time I have chosen not to have my ovaries removed (I also have no family history of ovarian cancer but 6 very close female family members who have had BC). This is my second go round with BC (I am 41) and I am still here. I refuse to make decisions out of fear. This is the issue I have with this gene mutation - a lot of people in the medical community are too reactive and get people so scared that they are going to die that you feel you have to go along with all of their recommendations. Here is my advise to anyone in the medical field who deals with breast/ovarian cancer-- unless you personally have the mutation yourself I will take your MEDICAL advise not your personal opinion.

Wow! You may want to get a second opinion. I had a pushy surgeon like that my first time around and it really taught me to stand up for myself. To be honest an oncologist should be talking to you about medications like Tamoxifen - a surgical gynecologist is the Dr. who should be talking to you about your ovaries IMO. I am so sorry for you that you were rushed into such a life changing decision without feeling it was 100% what you want to do and even more sad that you have had so many issues. Due to my second go round with BC I will be having a double mastectomy with immediate implants this time but just met with a different surgeon today because my original one that I mentioned earlier thought I was crazy to have concerns with taking my ovaries out. Estrogen controls/helps A LOT of things in your body and removal of your ovaries before menopause can cause multiple health concerns such as heart disease, bone loss, depression, not to mention the changes to your skin/hair, and vaginal dryness. A lot of Dr.'s brush over these really real heath concerns. I am not having children (During the 5 years of Tamoxifen in my early 30's when I could not have kids I decided I did not want them - it had nothing to do with the 50% chance of passing this stupid mutation along to a child but that is a side benefit). Due to this I am interested in the newly forming research on removing your f. tubes instead of your ovaries and may have my tubes tied since that is a listed preventative measure.

I am sending you my positive thoughts. Remember there is NO rush! It concerns me that you are barely recovered from the breast surgery and they want you to rush into another surgery right away. Have your looked at the FORCE website at all? I have been on the the last month or so to try to educate myself. Stay strong!!

Ok wow! I really feel you need to get a second opinion. If not from a surgical gynecologist perhaps from a genetic oncologist or another general oncologist (or even a general OBGYN). Your oncologist seems very opinionated about something that is not his decision (too much so from what you are saying). His job is to give you facts and statistics and most of all OPTIONS. Please let me know if you go to another Dr. I have two tumors this time (both early stages) so I am not a candidate for lumpectomy again and to be honest I just want to be done with the whole breast tissue thing so I don't have to go through this again. Your mother has likely already went through menopause so that is why she is on that medication. I was on Tamoxifen which works well with pre-menopausal women. I swear by it and now wish I knew about the recent studies that indicate I could have taken it for 10 years instead of the 5 I took it because I think it worked for me while I took it. I plan to take it again after my surgery. If you want children you can not take it though. I am very worried about this Dr. of yours and hope you find a Dr. like my oncologist who lets me question everything to my hearts content! Your oncologist sounds like my original surgeon -- the first time I had BC she called me twice at my work and begged me to have a double mastectomy and then to undergo chemo. I declined both despite her pleas but she made me feel like I was crazy until I decided she was the crazy one! You are right. We are strong! I am sending you all my positive thoughts!

Dive cat, and everyone

This is a very inportant topic. I am glad we are talking about it. I understand the doctors but in my expierence they wanted to just cut everything off. Right now its only been 4 months, and I have the nuero pain. I am adjusting to what I look like. I also get very frustrated because I can not do things as I was able before all this mess happened. People do not get what we have been through, and these doctors are quick to take body parts. I will admit I am struggling emotionally ,I had 7 surgeries and I was in go mode just needed to survive this. Now its all hitting me. People oh you have fake boobs, I want to strangle them

HI--If you haven't already, have a look at the FORCE website--www.facingourrisk.org--they have lots of really good info about the risk of Ovarian cancer for us BRCA folks--Best of luck t you!

That is horrible and simply unacceptable to me! I am so upset that you had to go through that!

Best of luck to you! I have been to the FORCE website a few times and agree it has good info. I even emailed one of the founders about the whole ovary removal issue and she emailed me back within 24 hours which was cool. You are correct - you need to share your story! My friend has told me a few times how I impact people without even knowing it because I get them to research on their own and try to make them understand that Dr.'s are not Gods just people. My Oncologist is great with me and all my questions but he admitted to me that 96% of his patients never question anything - just do what the doctor tells them and don't even look up the side effects or alternatives. It is sad.