CSN Login
Members Online: 12

New to this.....High CA 125

Mila A P
Posts: 6
Joined: Feb 2013

Hello. I am new to this.  I am 45 years old.  I recently went to the orthopedist with a hip injury.  I was positive it was a fracture.  Well, no fracture, but I did have a mass in my uterus.  I went to see my OB, and because of my past history with severe endometriosis she suggested I have a full hysterectomy. She did some blood work, and set me up with an oncologist that will perfrom the surgery.  During my first visit with the oncologist, she asked me if I was familiar with the CA 125 test.  I was not.  My number was 919.  Since that visit I have done some research on the test.  Now, I am really scared!  My surgery is scheduled for next Thursday, March 7th.  I am so nervous.  Any thoughts?  I know that endo can mess with the numbers, but 919?  I have many of the symptoms of OVCA, with the exception of bloating.  Anyone experience chronic fatigue?  Any replies would be appreciated.  Thank you!

          

2timothy1 7's picture
2timothy1 7
Posts: 336
Joined: Jan 2012

Hi Mila

Yes I experienced fatigue a few weeks before being diagnosed. Just couldn't wait to tho to bed. I would want to go to sleep by 8:30. I usually didn't go to bed till 10. My ca125 was3400 when diagnosed. 

Is your onc a gynecological oncologist ? Statistics show OvCA patients have a better outcome if they do the surgery. 

 

Fatigue can be brought on by many things though. So don't get too worried until you know for sure. 

God bless you.

Mila A P
Posts: 6
Joined: Feb 2013

    Thank you for responding. (I wasn't sure anyone would.) First of all, how are you doing, now.  Your CA 125 was incredibly high.  Here I am worried about my number.  It puts things in perspective.  Did you have endometriosis, or any other issues?  

The surgeon performing my surgery is a Gyn/Onc.  I have met her, and she is very thorough.  I will not know anything until I have surgery.  I feel I have many of the symptoms for OVCA, and have had them for quite some time.  What were some of your symptoms?  

God Bless  

2timothy1 7's picture
2timothy1 7
Posts: 336
Joined: Jan 2012

Glad you have a gyn/onc surgeon. Sounds like you are in good hands. 

My symptoms were fatigue, felt full after eating small amounts and right upper quadrant pressure.  Thought all this was related to having my gall bladder removed a few months prior.

I remained NED for bout 7 months. Ca 125 is on the rise again(101). I'm trying to get into a clinical trial at the moment. Just praying God will lead us all in the direction we need to go.

Surgery is a scary thing to face. I held onto the verse :2timothy 1:7 to help with my anxiety. I recited it often in the days leading up to it. 

Scripture still helps but I've found some anti anxiety pills to help as well:). I wish you the best!

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

I also want to emphasize that the surgeon who is doing the surgery should be a gynecological oncologist, and a good one.  This is very important for the effectiveness of your surgery. 

ConnieSW's picture
ConnieSW
Posts: 588
Joined: Jun 2012

Did they biopsy the uterine mass?

 

Connie, from the uterine board

Mila A P
Posts: 6
Joined: Feb 2013

Not yet.  I have several fibroids.  The concern is over the mass on my left ovary.  They will do a biopsy when I have my hysterectomy.  I was just concerned because my CA 125 was 900+.  Seemed high, even with endometriosis.   Thanks, Connie 

Kaleena's picture
Kaleena
Posts: 1136
Joined: Nov 2009

Milia:

 

When you do have your hysterctomy, I assume you will be having a total hysterectomy (tubes, etc.), make sure or ask if they are also removing the omentum and your appendix.  While they are in there it will be best to have those remove too.

Also, inflammation can raise those CA 125 numbers.

 

I hope the best for you.

 

Kathy

lovesanimals's picture
lovesanimals
Posts: 1251
Joined: Sep 2011

It sounds like you will be in good hands with your gyn/oncology surgeon.  I myself did not experience any chronic fatigue prior to my diagnosis.  I had off and on pelvic pain and increased abdominal bloating.  The scary part is not knowing and the hard part is the waiting.  I will be praying for a good outcome for you but know that whatever the outcome, you'll find that you have the strength to face it and to deal with it.  We're here to support you in any way we can!

Hugs,

Kelly

MJensen
Posts: 93
Joined: Oct 2012

Hi Mila,

There are so many things that can cause your CA125 to go up.   Because my ovarian  cancer is seeding and not a measurable tumor we have to rely on my CA125 to monitor how I am doing.   I am currently recovering from major abdominal surgery....bowel obstruction with 9 days in the hospital.  My CA125 was 1800 before I ended up in the hospital.  After surgery and coming home, the DR had me take more blood tests.  My CA125 dropped to 415 after surgery with NO chemo.   The DR said the obstruction caused my marker to rise.  I am back on chemo again and hope the marker will continue to drop.  Hopefully your high marker is due to all the other things you have going on and your mass will be benign.   As for fatigue, I was very tired before getting my OVC diagnosis.    My GP ran an Epstein Barr test.  It was off the chart.  So my chronic fatigue was contributed to EBV.   Hopefully your fatique is due to something other than OVC.   Good luck and keep us posted please!!!!!

Michele

Mila A P
Posts: 6
Joined: Feb 2013

Thanks for all the responses.  I am so glad I found this discussion board. Yes, the hardest part is playing the waiting game.  I will remain hopeful.  One week till surgery.  I will keep you posted!  God BlessWink

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

My ca125 was in the high 200'schem the day I had surgery and 19 the day I started chemo.  10 when I finished my chemo and I am now (and have been since June) NED (no evidence detected).  CA level is a very tricky thing.  So mnay things can make it rise.  I had a check up test done like 2 days after I got over a tummy bug and it was up to 19.  4 weeks later on a follow up check it was back down.  I have even heard of people having it go up after dental work.

As far as symptoms the only one I had was fatigue and it was not every day.  I work at our high school so I am up at 5 AM.  Some days I would come home and falll asleep and some days I wouldn't.  I had waht my doc told me was an ovarian cyst but nothing to be worried about.  He referred me to my gyn/onc because they were growing but to quote him"nothing to worry about"  Dumb Ass.....  The only good thing that quack did is set me up with a kick ass oncologist.  She is the best.....LOVE her.

Your endemetrosis can certainly be raising your numbers.  Don't get ahead of yourself.  The mind is a very powerful thing...  Try not to let it wander off....

Good luck with your surgery and I agree with what was said above.  Make sure your surgeon is planning on taking out that omentum....  It is a nice fatty thing for cancer cells to snuggle right in to...  My doc also removed my appendix too.  When I asked her why she said why not you don't need it..

Please come back and let us know how you make out.

Mila A P
Posts: 6
Joined: Feb 2013

I am back.  Three days, post-op.  I had a complete hysterectomy.  The tumor on my left ovay was removed, along with several fibroids, and of course endo.  The tumor was grapefruit size.  The pain I was experiencing in my hip, and sciatic seem to be gone.  The docotor seems pretty confident that I do not have OC.  She sent the tumor to the pathologist, and I get the results on Tuesday.  So, the 919, CA 125 must be attributed to the endo, which was everywhere.  I was terrified, even though I had read about the possibilities of a false positve.  It is so hard to sit, and play the waiting game!  I am grateful for this website, and all the knowledgable, caring women.         

lovesanimals's picture
lovesanimals
Posts: 1251
Joined: Sep 2011

So glad that your surgery is behind you and that ovarian cancer is very unlikely!  Yahoo!  From what I understand, having endometriosis can cause you to have a high CA 125 and I'm sure that's what happend to you.  Still, I know how hard it is to wait for the results and I know you'll be relieved when the good news is official on Tuesday.

Hugs,

Kelly

mopar
Posts: 1950
Joined: May 2003

As we have discussed here in the past, endometriosis definitely can raise those numbers. So, here's keeping the good thoughts.  Let us know, Mila.  Till then. . .

(((HUGS))) & Prayers

Monika

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

I am happy that the surgery went well and congrats on the first round of good news.  Praying for you on the second round of news.  Hopefully they took everything they needed to take out and sent it all for testing.  The waiting is the hardest.  I am from the uterine cancer board and cross read of the OVC board as the cancers are sometimes similar.  Praying for a complete all in the clear result with no cancer.  trish

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

I am so glad for you!!! Happy recovery. Kim

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

How did you make out today at your appointment

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network