Free Fluid - no sign of cysts - causes?, BRCA 2 positive

[vles_99]

Hi,

I've been 'lurking' on this site lately as I'm starting to get terribly frightened of what might be happening to me.  I have a strong family history of ovarian cancer (mother diagnosed at 49, maternal aunt diagnosed at 47, other maternal aunt - breast cancer, diagnosed at 45 - my mother was the youngest of all her sisters).  I am 39 and finally got the BRCA testing done and found out I am BRCA 2+.

For the past 2 years, I have been having regular (6 month) transvaginal ultrasounds and CA-125's.  I keep getting told everything comes back 'normal' .  I recently found out that usually they have seen fluid.  They keep attributing it to burst cysts.  I had played along with that thinking that was all it was.  Recently, I felt a little (very little ) back pain and cramping and something just told me to get it checked out.  I also felt something that had the symptoms of sciatica (dull pain running down the left buttock, back leg, foot)...i started to worry if this is all related.

In the TV Ultrasound, they found fluid but no signs of a ruptured cysts.  That seemed to get me alarmed since I would think that there should be some signs of cyst material in there (and started to make me wonder if all my reports were similar!  I do not have copies but will be requesting them).  I had a 4 week follow up and the fluid is still there.  Now that I've come back as BRCA 2+, my gyn is now concerned (not sure why there wasn't concern before considering my fam history).

I'm obviously terrified as I have had to think about the possibility of this happening since my mother passed 14 years ago (I kept thinking that as long as I get my ovaries removed by 40, i'd be ok.  I have 2 young children and I'm just terrified...that's the best way I can describe it).

I've looked for posts on free fluid with no signs of cysts and haven't seen anyone with similar circumstances.  Has anyone experienced this?

thanks to all!!

[sher2140]

Dear Vicki,
It sounds to me that you are doing all the right things. My prayers will be with you that everything comes out ok with your tests. You are so right to get the ca125 and to have your ovaries removed. My friend's 2 daughters did that after they had children because it is an added protection. I am also BRACA 2 positive and feel I would have been diagnosed earlier if my gyn had given me a CA125.
You will be in my prayers. Keep me posted as to your surgery on 8/15. If you have any questions about it, I could ask my friend's daughters.
All my best,
Sherry

[vles_99]

Hi Judy...

I am scheduled for a bilateral salpingo-ooprectomy on 8/15.  They will drain/test the fluid then.  I had my blood drawn last Wednesday for a CA-125 and I'm waiting on the results to see if it has gone up since 6 months ago (I think it was less than 7 in the last test).  I'm praying the CA-125 is not up...will cause even more anxiety, stress, no sleep to have to go thru until 8/15.

If the test of the fluid comes up inconclusive, then I will ask for the CT scans as well.

thank you!
Vicki

[JC145]

See your gyn or PCP and insist on a CT of the chest, abdomen & pelvis with and without contrast.  Fight for it if for not other reason than peace of mind.  How has your CA125 been?  Judy

[msjazz]

I can't find anything on this for you. Is there a way for the doctor to get some of the fluid and run a pathology on it. That is the only way I know to be sure. I had fluid in my plueral cavity after remission from cancer, and the fluid was drawn off and tested for cancer cells. Maybe someone else will come by that knows.  Best wishes   Donna