Your evaluation of my symptoms

[ccrisanto]

I am just going to give you the short version of my issues.  i went into the ER last week with severe pain, nausea and vomiting.  They did ultrasounds and found complex cysts.  I was diagnosed with endometriosis through a laparoscopy done in Feb 07.  the day after being in the ER, I was extremely nauseated and vomiting for about 4 hours straight. The ER doctor referred me to a gynecologist and I went in to see him the next day.  He did the CA 125 blood test and had me return the next day for another ultrasound.  They found two complex masses on the right ovary 5.1 x 4.8 x 3.4 and 4.2x 2.9x4.2cm.  They are not sure if it is one large mass or two separate masses.  The CA 125 came back at 1547 u/ml.   I was immediately referred to the gynecology oncologist who i will be seeing in the next couple of days.  My question is, just from these symptoms and problems, what would your initial reaction be?  I am 30 years old, never had children and never been on birth control.  My sister was diagnosed with breast cancer at 30.  I have heard that the CA 125 can be extremely elevated due to a ruptured ovarian cyst and I am thinking that is probably what happened, but what would you say?  

[hopeshell]

I think it is wonderful you are already on your way to a gyn/onc.  This is the most important thing you can do to have your best outcome.  He/she will go over the options with you but I am sure you are headed for surgery with the size of your mases.  They are right on the borderline of too big to leave in but since they are complex and you have a high CA-125, it is my bet the gyn/onc will want to do surgery.  

The place you are right now is one of the toughest because waiting is so hard.  Unfortunately, there is no way to know if you have a benign or malignant condition until surgery.   Please keep us updated on how you are doing.  Best wishes.

[ccrisanto]

So, kind of frustrating, but I just got a call from my regular gynecologist, he had just received the notes from my appointment with the oncologist and in there it stated "regular CA 125 level".  I am not sure what is going on, since I specifically had the conversation with the oncologist about my levels being elevated.  My doctor called the oncologist and i am on my way back in to have another blood test.  If my levels are still elevated, I will be on my way back in to see the oncologist on Wednesday.  My luck may have been short lived.  But, then again, it is much better to be safe than sorry.  I just wish the oncologist would have been more attentive.  It seems that maybe he was just distracted and not paying attention to ALL of the reasons I was there to see him.  I wouldn't have even been there if it hadn't been for the CA 125.  I still think it is all probably because of my endometriosis, but I guess we will have to confirm that.  I will let you all know what happens with the blood test because I am sure if it is still elevated I will be going in for surgery.  Thanks for all of the advice and concern.

[Treebee]

I too had multiple complex cysts that were bilaterial (5.9, 2.9 and 6.9 cm) and an elevated CA 125. My gyn/onc. gave me a few options and one was waiting 2 months and repeating the TVUS. She didn't recommend that but it was an option. I had 3 TVUS before I was referred to the onc. as my reg. gyn wanted to make sure they didn't resolve on their own. That's 3 months of watching those darn cysts. I'm 46, have completed my family and my maternal Grandmother died from OVCA so had a TAH/BSO on Jan. 3. Final path report came in yesterday and all the cysts were endometriomas! I'm so relieved! You have already had a lap that confimed endo. right? I know how hard the waiting is but it sounds like you have a good dr. and will be followed carefully. Try not to stress! Good luck and God Bless!
Teresa

[hopeshell]

That sounds like such good news!  I am relieved for you. I have never really heard of a situation like yours where the dr. didn't want to rule out ovca by surgery when the CA-125 was in the thousands and  two complex cysts.  My gyn/onc told me that I didn't have the choice to wait and see with a 6cm complex cyst and elevated CA-125 - he said it had to come out.  Your gyn/onc must have gotten an clear picture from your tests to make the decision to not check it out further.  Thats why it is best to see they gyn/onc.  How wonderful you didn't have to wait very long for your appt.  Best wishes with your follow up.  Take care.

[ccrisanto]

Well, I just got done meeting with the oncologist and I feel much better.  He did a quick exam, (always fun) and went over my history and all the test results with me and his opinion is, it isn't cancer.  He isn't even recommending surgery at this time.  he did give me a prescription for birth control to help with the endometriosis and asked me to come back in 4 weeks, do another ultrasound and see where we are at that point.  I let him know all of my concerns and he had answers for everything.  I have never taken birth control and for the past two years have been trying to get pregnant, but with such severe endo it's no wonder it hasn't happened.  I have felt strongly about not taking birth control or hindering my fertility in any way for the past year, but at this point i just need to do something to slow down the endo and I guess this is it.  Anyway, i have another ultrasound in 3 weeks and we will see where we are.  I really appreciate all of your help and advice.  Oh, my sister was tested and was BRCA negative!  Thanks

[hopeshell]

I remember the days in the place you are right now.  Just waiting to figure out what is wrong is so stressful!  Post whenever you have questions or just need to vent something.  If you go under "my MedHelp" at the top...you can add something to your profile and can join the community.  It is good for people to have an idea of your situation since it gets tough to remember without a reminder.   I'll be praying for you to have a good outcome.  When I was where you are I tried to keep my mind busy by watching funny movies, spending time with loved ones and praying.  I went into my surgery in a good place with peace knowing that no matter what the outcome I was going to fight it and hit it head on without fear.  Of course, there is always fear of the unknown or something as serious as surgery or cancer.  But, that is just what helped me.  It was a mindset to change from "OHHHH NOOO" to "I can handle this with God's help no matter what."  Just curious...with your family history...have you been tested for the BRCA gene?  I'll be praying for you.  Shelly

[ccrisanto]

Thanks so much for your comments and support.  This is my first experience with a forum, but the waiting really is too hard.  My little sister had an OC scare about 4 years ago, had surgery and found that her cysts were benign, so i am just assuming the same thing will happen with me.  We will see, but i wish there was some way to know before having surgery since I don't know when that will happen.  My doctor has been very proactive though and everything is happening as quickly as it can.  
Thanks so much for your reply and your support