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I am worried sick. I have had a pain on and off for 5 years now. I am 27 now, was 22 when it started. Drs have always blown me off but it wasn't until 8 months ago that I had a transvaginal and abdominal u/s to look for cysts. Everything came back fine. Pain comes and goes, so I go to get a ct scan. Everything showed fine. Ovaries have shown no cysts. Less than 2 years ago, I had a c-section, my doctor noted that my ovaries and tubes look good. Now he is ordering ca-125 and cea bloodtests to look for cancer in the ovaries and lower g.i. tract. Getting these tests scare me because I've heard how unreliable they are. They have found NO cysts, no tumors, nothing. I'm thinking it might be endometriosis. I know that endo can make those tests come back elevated and I'm scared that by getting this test I'm going to freak myself out. I do not feel like there is a reason for my dr to be scaring me like this. I really feel like he's jumping the gun. pennsylvania scan and u/s showed everything was good.
Like I said, I've had this pain off and on (mysteriously stopped when I was pregnant) for 5 years. I would think that after FIVE years cancer would have spread to something else, RIGHT? He looked at my ovaries and tubes when I had a c-section, which was 3 years into my pain problem on my left hand side. Even after just 3 years of pain in that spot, if it was a tumor, the doctor would have seen it. Then now that it's 5 years after the pain, I've had ultrasounds and pennsylvania Scans, and everything shows fine. It couldn't be cancer, right? Don't you have to have a growth SOMEWHERE? I think the next logical step would be to go in and look to see if they can find endo. Screening me for cancer using these blood tests to me is scary and silly. It could be so many other things. Right? I might have a cystic ovary or endo...or even a twisted ligament. I do have a very tilted uterus, I wonder if that could cause pain? Someone please console me here. I didn't sleep at all last night and I'm VERY upset.
You should ask for a serial CA-125 test. All that means is that you take multiple tests over a period of time. A positive result obtained in this manner has a greater than 99%, chance of being ovarian cancer, which is very highly specific You're absolutely correct that the CA-125 is not all that useful as an early detection method, but, frankly, since the tests aren't all that invasive and your doctor is actually offering them... grab em. It's good to try and treat ovarian cancer early, and if you are cancer-free, well, the results will ease your fear. I'm not personally that familiar with the CEA test, but between it and the CA-125 you'll get a good idea if you have any *advanced* sort of cancer. Your doc should certainly investigate other issues that may be causing your pain, including endometriosis. Best of luck, and I hope your results are good.
Iv'e been there and done that, my experience is as follows: Terrible menstraul cramps for 5 years nothing ever showed on ultra sounds. Last Sept. I went to the Dr. couldn't take the pain, sent me for pennsylvania scan, a big ovarian cyst showed up. Had a CA-125 test done, my # was 1725, suppose to be under 40. Scared me to death, family flew down, thought I had cancer. Went to a Oncologist Gynecologist and had a total hysterectomy, found out I had a severe case of endometrioisis, no cancer! Endo doesn't show up on ultra sounds or pennsylvania scans, it does raise your CA-125 # dramatically! I don't think you have cancer, but a great chance of endo. Doesn't mean you have to have a hysterectomy, there are other ways to treat endo. Have the CA-125 test done it will confirm more of a diagnosis of endo. I worried myself sick and it was never cancer. Please don't do the same thing, but do get treatment, I would bet you that it is endo. Let me know! Good luck!
My first thought as I started reading it was in fact endo. Has your doctor even mentioned this? Unfortunately though for you, the only way to determine if you have it is through a pelviscopy, which is way more invasive than a bloodtest or ct scan. But don't be afraid, it's not a painful procedure at all.
I understand your fear. I have had GYN problems since my early teens. It maybe endo. or pelvic inflammatory disease or even a urinary bladder problem such as interstitisl cystitis. IC is not exactly like a bladder infection or UTI. It involves inflammation of the urinary bladder and is painful. etc. If you are not in agreement with your GYN find another and be sure he/she deals in high risk situations. Take all your records with you or ask the new doctor to request them from your old doctor. The reason for the pain needs to be found and treated.
The issue here is you dont trust your doctor...need to go find another, or have a sit down wiht him/her and tell them what you told us.