CA-125 - Am I going overboard?

[writerbytrade]

Hello Everyone!  I'm new to this forum, and I'm hoping you can help me out.

I'm 38 years old, and for the past 3 months, I've been suffering with a lot of abdominal discomfort. It hurts after I eat, but I always feel bloated, heavy in the abdominal area, and I fluctuate between constipation/diarrhea constantly. The symptoms are unbearable during the beginning of my cycle.  I can't even move my body or go out. I literally feel so heavy and clogged, that the only thing I can do is lay on the floorl.

I have an awesome regular diet, and very fit. I exercise everyday alternating between weights/jogging 4.5 miles.  I'm seeing a gastroenterologist.  All tests came back negative for anything involving galls stones/bladder issues, ulcers, acid reflux, liver conditions, hernias, etc. Blood work is normal. CT scan showed free fluid in my abdomen, but they said more than likely it was a broken ovarian cyst and it will re-absorb in the system.  I have a history of Ovarian cysts and endometriosis, so it doesn't phase me.  However, the feelings/symptoms I've been having are very different.

I think I've had every test imaginable EXCEPT the CA-125.  I visited my GYN a month ago to ask him to rule out anything female.  He did a pelvic exam, asked if I was under significant stress, and said he doesn't think it's anything female.  

After another month of hell, I called my GYN back and spoke with the nurse.  I asked if I could get an order for the CA-125. . . she said she thought I was going overboard, but would discuss it with the doctor and get back to me next week.

Am I going overboard?  Another thought I had was IBS, but I'm not sold on that.  Out of the blue, my gastro doc called on Friday and wants to have a consult with me on Monday.  He said it's nothing to worry about, but I'm a difficult case.  Dah.

Thoughts anyone??  I'd appreciate your input.  I don't know what else to do/think? Am I going overboard?

Sue

[dot-to-dot]

No, you are not going overboard.  I would demand that your gyn rule "out" ovarian cancer, then proceed.  I had the same symptoms at age 44 and was told to take estrogen, fibercon, all kinds of things that were way off.  I had a CT scan which was read incorrectly by a radiologist. (law suit?) Finally, after much persistance on my part, several months, a laporoscopy found me full of ascites/ovarian cancer stage III.  Many doctors don't know much about it. Find a gyn/onc. or demand the CA125 test.  Mammograms give dubious results, but we still do them.  They do PSA tests for prostate cancer for men.  I thought I was going overboard getting the laporoscopy done.  Just think if I hadn't. The incompetent doctors in my area missed my cancer on a pelvic exam, ultrasound, and a CT scan and I was full of it.  A gyn oncologist is much better trained.  
I don't mean to scare you, but I  had such a bad experience getting the help that I needed.  It has been 2 years and I have never had a remission - just chemo after chemo.  If only I had been diagnosed sooner.
Let's hope it is nothing serious, but rule out the serious stuff first.

[MPC726]

You sound a lot like me and my complaints for several years.
Not to alarm you,but ask your doctor to send you for a 5HIAA 24 hour urine collection.I am post menopause. In my childbearing years I suffered greatly with endometriosis pain,and corpus luteum cysts. Menopause was a relief.
I still had the ab symptoms. Then I began to get a variety of "strange" stuff.  Doctors said Irritable Bowel. The most serious symptom started one year ago. Labile hypertension. ER several times with BP through the roof.
An ER doc suggested the test. It was positive and led to diagnosis of Carcinoid Syndrome. A rare Endocrine cancer thats misssed more than diagnosed.Since connecting with a Carcinoid Support group,I try to sread awareness. Just a thought.
Good luck.

[alanpvegas]

rmarie is right.  Basically CA-125 tests are approved by the FDA for monitoring the treatment of ovarian cancer.  However they are frequently given when all signs point to 'yes' for ovarian cancer.  This is because it gives a starting point for the monitoring of treatment.  Also it is done just to make sure they are positive about the diagnosis before surgery.

Either way, yeah, ask them for it.  If it's covered by your insurance why not.  If not, you can get a private company to do your ca-125 test.  I think LEF offers these, but I'm unsure of what is all involved....www.lef.com or direct:  http://www.lef.org/newshop/items/itemLC002303.html
I'm sure others offer it as well.

Alan

------------
Ovarian Cancer Research Website
http://cancer.alanpeto.com/

[dian07]

Hey there kiddo.....the responses, though responsible....are scary as hell.....if you were my daughter I would tell you to sit tight....check with your gastro guy on Monday and see what he has to say then we will take it from there.....take a deep breath.....exhale.....now let's just take this one step at a time....don't scare yourself to death.....we will get to the bottom of this and then you will decide what to do.  You say you have a history of endo.....well, Sharon in England (and I hope she will show her face here soon), deals with endo.....the same stuff you are describing......you still have lots of testing ahead so don't try to diagnose yourself.  As was stated earlier....CA125 is a test that is valuable mostly for women who are menopausal or post-menopausal; women who have been diagnosed with ovarian cancer.....work with your doctors.....stay in touch here and try to be pro-active and informed..... I lood forward to hearing from you tomorrow....hang in there kid......we are all here to help in any way possible.....
Peace.
dian

[rmarie]

Will the symptoms you are going through, drive you if you don't have answers, yes.  That being said the CA-125 in a pre menopausal woman is not all that accurate.  menstration can elevation as can other inflammatory conditions, so it is not a reliable test.  The fact that it was the Gastroenterologist called could mean he/she has an answer for you, it wasn't the GYN that called.  Try to say sane, and wait till tomorrow and call the office.  Good luck.