elevated ca 125

[corky13]

Hello,
My question is on the ca 125 blood test. I have been having issues since the end of July 07. I was thought to have an etopic pregnancy and laproscopic surgery was preformed. My doctor did not find an etopic pregnancy, but did find a large ovarian cyst. He drained the cyst and the fluid was sent to pathology. The results came back non-malignant. Previous to this event I had noticed that I felt bloated quite often, but didn't think much of it. After the surgery I started having abdominal upset and pain. I would also have dull pelvic pain (this pelvic pain was happening prior to surgery). I was told this was due to the functional cysts. Along with these symptoms I have had an ongoing problem with acid reflux. At the end of August I noticed a strange sensation of feeling the need to have a bowel movement and made a doctors appt. I was refered to a gastro doctor. He ran some tests and did a sigmoidoscopy and diagnosed me with IBS. I thought the diagnosis of IBS had to be based on the symptoms of a drastic change in bowel habits, so I was not convinced of this diagnosis. Since the miscarriage that happened in July, I noticed that during menstruation a large amount of rather big blood clotts were becoming quite frequent. I went to my regular gyn and was reassured that everything in this area was fine. I still did not feel comfortable with this so I went for a second opinion. Previous to this second opinion my family doctor had ordered a vaginal ultrasound and found a small 2.8cm complex cyst. When I went to the new gyn he ordered another vaginal ultrasound (3 months later) and a ca 125 blood test. The vaginal ultrasound came back with no abnormalities, but the ca 125 came back elevated at 52. The new gyn was sure this was due to the previous surgery. He wanted me to get retested in Feb. 08. I have since moved for a 6 month period and have seen three different doctors trying to sort out this issue. I saw a gyn/onc and he suggested that I skip the ca 125 retest and just get a vaginal ultrasound in Feb. His reasoning was that the ca 125 is not reliable in premenopausal women (I am 37). He reviewed my previous reports and indicated that I had nothing to worry about. Since than I have had 2 more vaginal ultrasounds, an abdominal ultrasound, and a cat scan. These tests all came back normal. I have been retested for the ca 125 twice. One came back elevated at 41 and the latest came back elevated at 50. All the doctors that I have seen all say that I have nothing to worry about and that I do not require any additional tests. Are my symptoms suggestive of IBS and can IBS elevate a ca 125. My long time gyo suggested that I was just one of those people who's range of the ca 125 was elevated naturally. Does this sound right? I just want to ensure that there isn't anything else going on. I am really leaning towards getting my ovaries removed. I am very worried about this. Can you provide any additonal thoughts and suggestions.
Thank you

[Helmar]

Hello again... I don't mind how many questions you ask... that's the best way to learn about this disease... just hope I can be of help. As I've mentioned..... I had bowel changes and bloatedness and so the Doctor sent me for Colonscopy/Gastroscopy. As there was nothing inside, they came back negative. but the cancer was working on the outside of the bowel...thus I now have a colostomy. They decided some months earlier to do a TVU as I just wasn't feeling really good, but that was o.k. too. My GP sent me for a multitude of blood tests, but not the CA.125. Naturally the blood tests were o.k. too. It was a 'comedy of errors'... the tests they should have done, they didn't bother until it was well advanced. I hope you will let us know what your Doctor says when you visit on Thursday, and please don't let them 'fob you off' as they seem to do with many of us.
Best wishes...hugs...Helen...

[corky13]

Hello Helmar...thank you for replying to my post. I am sorry to hear that you waited so long to receive the help you needed. How were you diagnosed with IBS? Did they run any tests that would suggest IBS? Why did you have the ultrasound 18 months prior to your diagnosis? Were you having issues at that point? Were there any other tests done prior to your ct scan or were the doctors you were seeing just doing physical exams? Sorry that I am asking so many questions, but I really am at the end of my rope.  I am going to see my gyn on Thursday and am going to discuss with him the removal of my ovaries. This whole ordeal is just to hard to deal with and would like for it to be resolved. At this point, I feel that this is the only way I can be certain one way or the other.  Thanks again Corky 13

[Helmar]

Hi there...I don't want to scare you in anyway, but in my case, I went back and forth to the Doctors with bowel changes and bloatedness and I was also dx with having IBS. This went on for over 9 months when finally I was even throwing up a cup of coffee. They sent me for a Ct scan and that came back positive to cancer.... ended up being Stage 4. It seems that you've already had most of the scans, so I'm not sure what else to suggest. I had Transvaginal U/S about 18 months before my dx, and that too, came back negative. I guess you could get another one or two opinions... and perhaps another Ct scan in about 3 months to see if there has been any change.  Don't give up until you are satisfied with their findings. This is one horrible disease, and now that you are aware and staying alert,that's good.
I want to wish you well... and hope you can get the answers soon...hugs...Helen..