CA-125 accuracy

[unhappygirl]

This is going to sound very strange but I have to ask. I have read a lot about abnormaly high results, not necessarily meaning you have cancer. But does anyone know if your results come back normal. if you could still have cancer?

[Tybear]

My CA125 prior to my diagnosis was only 46 (35 being what my Dr would consider normal). That just goes to show you how unreliable this test is if your pre-menopausal - I had a stomach full of tumors and was diagnosed stage 3c. Get a second opinion if your able to.
Becky

[chandrika]

I know how you feel about doctors and trusting them. I have been complaining for years of pain and feeling unwell and my doctor just said it was all in my head, I didnt even get given a scan.

I eventually paid to have a scan privately which showed a 5cm solid mass. Even presented with the ultrasound picture my doc did nothing saying it was probably faeces. I had to get a private doctor refer me to an NHS gyn/onc and had an op last Friday.

It turns out that the pain wasnt in my head at all. I had a dermoid cyst that sometime had ruptured. Most people get hospitalised with a ruptured cyst, I was just told it was in my head.

And now I am left with alot of damage and adhesions down there,not to mention the fact that I have put up with alot of pain for so many years and had it all poo pooed literally, by my doctor.

Not all docs are so bad as mine i am sure, but in future I would ALWAYS get a second opinion when I am unwell.

[ShawnP]

Yes, it has happened.  My gyn/onc said the test is really not a good tool for pre-menopausal women.  However, my PCP had one done on me and it was normal  2.   He said that doesn't mean anything and that I will be having my surgery on the 12th.  Pathology is the only real way to verify malignancy.  You can also have false highs as well and not have cancer.  It just seems silly to us all worked up over this test that might not mean anything.  

Shawn

[unhappygirl]

Thank you for your replies. Shawn, I know what you mean about the gut. I look like I'm about 5 months pregnant. And now I weigh less than I have in years. I'm not sure about the weight loss. I've had other stress in my life, but I thought I was eating enough.

I'm not an alarmist.  But sometimes you just know something is wrong. I wouldn't go to a doctor at all unless I felt really bad. I can take a lot of pain too. (I've had 6 children lol) When the doctor makes light of your syptoms it is soooooo frustrating. Let's face it, if he's wrong I'm the one who is going to suffer. Nothing will happen to him if I'm wrong. So why doesn't he just listen?

[unhappygirl]

Thank you Shawn. I hope everything goes well for you on the 12th. My level was 14 with anything less than 21 being normal. The reason I asked I because they found a complex, septated lesion on the right. I've lost about 8 lbs in the last 3 weeks and I feel awful. I've had endometriosis for years, but this pain hasn't stopped since June 25th. I know something is wrong and my GYN is fighting me on getting surgery. He did agree to do a hysteroscopy on the 13th. But if he doesn't see anything in my uterus, I'm afraid he won't pursue my pain or my lesion any further.

[ddemaso]

My CA125 came back normal and I was still diagnosed with cancer. My OB-GYN surgeon said you could have 100 women that you know have Ovarian Cancer take the CA125 test and only 50% would come back abnormal.

That doesn't mean you shouldn't have the test however. The only good way to diagnose a Cyst, Cancer, tumor is with a biopsy.

[ShawnP]

I have the exact same diagnosis....complex cystic lesion on right ovary.  I had a hyst in 97 leaving the ovaries.  So, if he doesn't investigate to your satisfaction, get another opinion.  Is the weight loss due stress of the diagnosis?  I lost weight over the last month however, my "gut" is bigger and my pants are tight.  My doc says it's due to the lesion.  Let me know what happens.