CA125 levels ..

I went to the ER in July due to some very painful abdominal tenderness. My whole stomach felt bruised super tender and just hurt to walk to move it was just awful. After several tests they found a 8.6 cm mass on my right ovary. The ER was ready to admit me and get me into surgery I opted to see my OB first before I did any emergency surgery. The next day I went to see my OB and they were concerned due to the size and the fact it was complex. I had the CA 125 test done and the HE 4 test done that same day. They called me back and I had an appointment going over that the CA125 test came back abnormal in the range of 7018. The HE4 was in the normal range so they referred me to an oncologist. The first oncologist showed me what concerned him which was a small portion or the mass was solid and he said it was impossible to say if it was old blood or cancer. The oncologist was ready to set me up for surgery the following week. I wanted a second opinion so I met with another oncologist and he felt confident that that solid part of the mass was old blood clot and that he wanted to try birth control along with taking a monthly CA125 test. Second test was done in August and my levels went down by 5400 points to 1584 obviously still abnormal. Third CA125 test done levels went down again 1200 points to 283 still abnormal. Anyone else gone through anything like this . I still have tenderness and some on and off pain in my pelvic area. It tends to be worse if I have to use the restroom since I feel like there just not enough space down there with everything. Eating fine just some on and off twinges of pain. I have to wait till November to get another ultrasound to see if the mass is shrinking. Hopefully someone has some advice or has had a similar situation as mine. I feel better my numbers are steadily dropping I guess I am just still nerve wracked they are still decently high.. any advice or words of positivity welcome .. thanks

[pessell]

Hi I had CA125 test a few times, first was 450 then 150. my Gyn has said inflammation can cause this to raise. i have adynemosis/Fibroids also sometimes get cysts, which can raise CA125.

try not to worry its not always what we think.

[Hidden in reply to pessell]

Thank you I am definitely not trying to worry I just have off here and there pain. It comes and goes on a whim. Sometimes working out will bother it other times I will be laying down and I will sneeze and it will literally feel as if someone just yanked on my muscles down there. I also find myself having to really strain to use the restroom. I have another appointment and blood work scheduled for October 5th and then November they want to do another ultrasound. I just wish I could understand why the pain comes and goes. Why I feel empty stomach feeling with pains and nausea.

[Hidden in reply to Hidden]

I got my blood results and they only dropped 59 points this time hanging out at 224 currently. Been having more discomfort and bloating when eating or even drinking. Clothes are getting tight and still having issues with using the restroom normally speaking. I am praying all of this is either endometriosis related or my cyst causing the havoc in my body. I go back November 2 and get my ultrasound and my last ca125 yay and hopefully if nothing is changed we can look at laparoscopic surgery to find out what is causing all the discomfort etc., staying positive. My OB said that he's going to discuss with the gynecologist his opinion on who should do the surgery if we go that route.

[Kate345]

My CA125 is 47 my gyno said a CA can be raised due to endometriosis etc.. it’s just the waiting to find out that’s awful

[Hidden]

Hi Kate I feel you the waiting game is just the absolute worst. I am praying that since the numbers are decreasing that it has to be a good sign it's not cancer. Just woke up one morning and bam now I am worried about everything little strange feeling ugh makes you crazy..

[Kate345 in reply to Hidden]

I know my numbers are only slightly raised but I’m still concerned.

I’ve seen comments on here of woman having numbers in their thousands and it just been endometriosis causing the raised number even things like periods or stress raising numbers .

I think the CA125 is a bit of a pointless test to scare people in many ways as it’s not a diagnostic.. you can have have high numbers and just have a pelvic infection yet it scares people.

My CT scan showed fluid on my left ovary - suspected burst cyst.. then my abdominal ultrasound could see my ovaries really clear and everything was fine .. I did the CA125 last week to try and stop the worry but when it was raised I was like oh god. My gyno reassured me that it isn’t a diagnostic tool.

What’s your next step in getting sorted? X