BRCA1+ and ovarian cysts

[jcengnj]

I'm a 30 year old breast cancer survivor who has tested positive for a BRCA1 mutation.  Recently, I had a transvag which showed a complex hemmorhagic cyst.  While I am aware that cysts are very common, the term complex makes me believe that there's a bit more going on than just a blood filled cyst.  From my experience with breast cancer, i know that my breast lump was complex which meant fluid AND solid/mass.  

My gyn/onc didn't seem too concerned but I insisted on returning in 6 wks as opposed to the 4 months he suggested.  

I've had a hard time finding information on this matter.  Breast cancer is everywhere and it was VERY easy to get all too much information.  

How common is it that complex cysts are malignant?  What other screening methods are practiced other than ultrasounds?  How can it be determined if it is malignant?  Could it be scar tissue from previous cysts?  

[AnotherKatie]

Hi!  Sorry to hear about your worries.  

In your situation, I would NOT wait around... and I think you need a new doctor, he seems a bit cavalier to me.

Having tested positive for a BRCA1 mutation you must be extra cautious.

Many complex hemmorhagic cysts are benign (mine were) and they do sometimes resolve on their own (mine didn't),  but you are very right to be concerned about the "complex" aspect.  

Doctors do tend to look at the size... once it gets around 5 cm they get more interested in them.

What are you going to ask for at the 6 wks mark?  Just another TVUS to compare growth?   Ugh that waiting is horrible.
Four months is definitely too long...

Unfortunately the screening methods are lousy  (do NOT go by the CA 125 test, it is useless IMO).  

The only way to truly determine if is malignant is to have it (and by it I mean usually they take the ovary unfortunately) removed and biopsed.

No I don't think it would be scar tissue from previous cysts.  I believe that it appears differently on scans but I don't know for sure.

I know that ladies on here such as Dian are going to post soon, and they are going to tell you to get to a NEW GYN/ONC immediately and not wait.  I would agree.

Keep us posted and very best wishes..
Katie

[rpeds]

Complex means that it is more than a single fluid-filled structure -- it could be that there are two cysts merged together or many other things.  Most complex cysts are benign.  The doctors will read the report to interpret whether it is worrisome or not.  It depends upon things like if the wall is thin, if they see solid components, if it is irregular, its size, your age (and as you say, your genetic history).  I also had a complex cyst and was told by three different doctors that the way it looked didn't particularly worry them except that I'm in my 40s so the risk of malignancy starts to rise -- and after 5 months of it not resolving, I finally had it removed, and they were right -- it was benign.  If you're not comfortable, getting a second opinion is always a good idea, but try not to panic before you need to (easier said than done, I know from personal experience!).  Best of luck!

[nyc lady]

Although I am not a real believer in stats, testing postive for BRCA gene mutation increases your risk of being dx'd with OvCa by 40 percent....but, remember, this is still a relatively rare disease.

I too would want to see another doctor, a 2nd opinion never hurt...and yes, most cysts are benign, and yours probably is too....at first I would want to be monitored a bit more closely then 4 months, but, if it remains stable and causes no problems, switching to every 3 or 4 months should be fine.

A lot of GYN/ONC would probably recommend a bi-lateral oopherectomy/salpingo when you are done having children.

This whole cancer thing is so scary...congrats on being a breast cancer survivor....please let us know what happens when you go for a 2nd opinion.

Best of luck to you!
Pam