should i remove my ovaries

[ovasure]

I am a brca1 carrier who was diagnosed with non invasive, non hormone receptive in situ breast cancer. However as a precaution, 4 gynocologists are pushing hard for me to remove my ovaries to prevent ovarian cancer. I personally don't understand it and I'm having a hard time accepting this only option. I've asked to be monitored on a regular basis every 4 or 6mths( ultrasounds along with c125 and a ct scan) but I'm told these tests are pretty much useless! I have gone thru a double mastectomy and reconstruction and the only reason why I didn't hesitate going to that extreme is because I was diagnosed with BC and the gene. Also, it meant i didn't need chemo and radiation. So to me that was a no brainer decision. In the ovaries case though, i have no idea what to do and it's because there are no symptoms, all tests are normal and my ovaries are fine. No suspecious cysts, no cramps etc... WHY take them out? WHY not get monitored and checked properly and vigidently?
I cannot believe for a second that early detection is not possible if you are doing all the right things......it's crazy! What about this new test OVASURE? Does anyone know anything about it? does it work in combination of other ovarian cancer screening tools for early detection?


This discussion is related to Should I do radiation therapy?.

[fvf147]

You shouldn't feel pressured either way.  The docs should do their job to inform and support you in your decision.  I don't see a problem with waiting a year or two.  You've been through so much already, I'm surprised they aren't being a little more supportive.  Did you ever see an oncologist?  What about a consult with one if not, perhaps they would be more compassionate.  I said I'd probably have it done, but I didn't necessarily mean right away.  

What is that HRT that Dr Phil's wife swears by?  Its supposed to be all natural and you rub it on your skin and there's not the usual risk as with traditional HRT??  You might have to be a celebrity to afford it, but I was just wondering if anyone else knew.

[ovasure]

Again, I appreciate the replies. In response to fvf147, I just turned 44 and have two kids ages 10 and 12. CT scans would only be done once a year and the radiation from that is very minimal. I would have to go on HRT, which really concerns me because of the things i have read about it. Although the doctors have told me some things have changed in terms of dosage, I feel there's not enough studies done to show whether or not they've improved in that area. I mean HRT causes cancer and that defeats the purpose of removing my ovaries in my view. Being a BRCA1 puts me at risk but it's not a sure thing and I could get cancer at 80........ Yes the risk is high and pretty scary but that's based on a number of patients ( about a 1000 something like that) do i trust the statistics? Not really and i don't mean to be rude. Studies are deceiving sometimes because you have to look at the age, health in general, family history etc...and I don't know who these people are or their situation. All I know is the study percentage of BRCA1 carriers risks of getting BC and OC. The thing is there's nothing wrong with my ovaries at all not even a cyst or suspicion of malfunction. If the Ovaries function was strictly for reproducing and nothing else I would yank them out in a heart beat but the fact is your body needs them even after menapause and if you yank them out you will have other serious problems.
There are other studies being done to help detect early Ovarian cancer and I'm wondering if I should just wait for at least a another year or so. Doctors are pressuring me to remove them before 45. So I have until Nov 2012 to decide. However, my double mastectomy was done in June and that's not even quite completed yet...I feel overwhelmed and frusterated and not ready to go into surgery again just yet.. It's very interesting to hear what others think and what they would do if they were in my shoes. I appreciate the good wishes and your replies, very helpful. I need to put more thought into this for sure...

[fvf147]

Wouldn't there be risk from repeated exposure from CT scans also?  I believe knowledge is power and I respect your efforts to inform yourself.  I personally would have it done.  But I also have a high family risk as my Mother died from breast cancer in 2005.

Do you mind if I ask how old you are?  Would you choose HRT in the absence of your ovaries.  That would be the area of my most fervent research and concern if I were in your shoes, but I still think I would have it done... but that's just what would be right for me.

All the best to you!

[bluebutterfly2222]

p.s. Upon rereading my answer above, I discovered that one comment may have been a bit confusing, and not say quite what I had intended to say.

Clarification: The primary reason for oophorectomy being a consideration for women with hormone receptor positive BC is to reduce the estrogen that feeds it. The primary reason for consideration of this step for women who are carriers of  the BRCA1 and/or BRCA2 mutations is to reduce their chances of getting ovarian cancer and BC, for which they have  heightened risks.

bb

[bluebutterfly2222]

Hi again,

Thanks for your kind acknowlegement of my reply.

Are you aware that the purpose of oophorectomy in BRCA positive women is NOT primarily to reduce estrogen (and is therefore not limited to those who have had hormone receptor positive breast cancer)?  

It, and prophylactic mastectomies, are the recommended course of action for the protection even of BRCA positive women who have not yet  had cancer, because the mutations in those genes elevate the risk, and often at an early age, for BOTH breast cancer and ovarian cancer.

You are correct that there are some elevated risks (such as cardiac) associated with elective removal of the ovaries in women requiring hysterectomies, but  the cost-benefit ratio scales tilt heavily in favor of this when you add in the BRCA gene mutations.

I do understand how difficult this decision and  the ones you have already made are, esp. at a young age, and I wish you all the best whatever you decide.

Regards,
bb

[ovasure]

Thanks for your reply. I appreciate your honest feedback. I know about all these statistics but thunfortunately there are also many problems and high risks with removing the ovaries as well. I've been told by these doctors that Ovaries produce Estrogen and Progestrone in huge amounts and that's what the BRCA1 cancers feed on. The reason why I'm so confused is because my cancer was non hormone receptive and non invasive.I guess new cancers can form that are hormone receptive???Anyhow it's a big decision to make and I don't think there's a right or wrong answer...I only wish there was better screening tools out there. They can send people to the moon but they can't come up with better cancer screening tools.........ummmm Thanks again for your reply I have a lot to think about.

[bluebutterfly2222]

Unfortunately, ovarian cancer has historically been difficult to detect until it is at an advanced stage (only about 20%of cases are detected early). Therefore women with BRCA mutations are often counseled to undergo prophyllactic oophorectomy.

It was hoped that OvaSure would improve this situation, but in 2008, far from greeting the new test with elation, many experts were saying it might do more harm than good, leading women to unnecessary surgeries. The Society of Gynecologic Oncologists almost immediately issued a statement saying it did not believe the test had been validated enough for routine use. (I'm not sure where things stand today in regard to this test; my search did not turn up any recent information.)

Meanwhile, women with BRCA mutations who undergo prophylactic mastectomy or salpingo-oophorectomy reduce their risks for breast and ovarian cancer, according to an observational study in JAMA.

"Researchers studied some 2500 women with BRCA1 or BRCA2 mutations. About half of the patients underwent risk-reducing surgery. After a median 3.5 years' follow-up, the following results were noted:

None of the women who underwent mastectomy had breast cancer events during follow-up, versus 7% of those who did not have surgery.
Similarly, prophylactic salpingo-oophorectomy was associated with lower risk for ovarian cancer.
Salpingo-oophorectomy was also associated with decreased risk for breast cancer in both BRCA1 (hazard ratio, 0.63) and BRCA2 (HR, 0.36) carriers.
In addition, salpingo-oophorectomy was associated with lower all-cause mortality among those with and without prior breast cancers."

Since FOUR GYNs have given you the same advice, maybe it's not so "crazy?"

Best wishes...