CA125

[sk2006a]

Hi - I'm posting again since I'm still having LRQ pain. I'm 52 and approx 10 years postmenopausal. I've had pain near the right ovary since mid-April. I now have it spread over a larger area, and sometimes on the LLQ too. I've had a clear colonoscopy, endoscopy (which revealed gastritis, severe acid reflux and a polyp - since removed), several clear pelvic, abdominal and TVUS, a D&C w/endometrial biopsy (clear, but little tissue to collect), and now a clear CT scan (abdominal and pelvic) with and without contrast. My ovaries have never been seen, which I guess is a good thing!  I don’t know if this helps, but I’ve been having problems with extreme gas, too, along with constipation and some bloating.

My problem is that I'm still having pain. My Internist ordered a CA125 just to be sure - for some reason never ordered by my GYN. Her nurse gave me the result as 32 and told me that I was “normal” since the cutoff was 35.  I've just read on several internet sites that the norm for postmenopausal women, esp those not taking HRT, is under 10.  I was finally able to speak to the GYN’s nurse practioner, and when queried re the CA125 upper limit for postmenopausal woman, said she was unaware of there being any difference between pre and postmenopausal numbers!  Do I need to worry about this number and request further testing?  (My gastro doc said I did need further testing since I was at the upper limit of “normal”!).  I am worried, and a bit confused at this point.

Thanks for any advice!

[Annekathryn Goodman, M.D.]

Thank you for your detailed post. So it sounds like you have had pain in your right lower abdomen that is worsening and a normal gastrointestinal evaluation.
Pain can be secondary to intestinal problems, gynecological issues, problems with the urinary tract, or musculo-skeletal injury.
1.Intestinal: Even with a normal colonoscopy and endoscopy, you could still have an intestinal problem that involves the small intestine. The colonoscopy only evaluates the colon or large intestine. An endoscopy only evaluates the esophagus (tube from mouth to stomach), stomach, a bit of the duodenum (first part of small intestine) There are yards of unevaluated small intestine. Pain can be due to a functional problem such as an adhesion, twist in the bowel, or tumor. Pain can be dynamic such as from a food intolerance. Pain in the right lower abdomen can be from the appendix which sits right there.
2.Gynecologic: Pain can be from ovarian cysts that twist or grow, fibroids, inflammation and abscesses.
3. Bladder spasm can cause abdominal pain but usually is associated with other symptoms. Pain in the ureter (the tube that brings the urine from the kidney to the bladder) can be harder to sort out. Ureteral pain can be due to a stone or a spasm of the ureter. It would be more common to see back pain with this.
3.Musculoskeletal: If you strained your rectus muscles, you can have severe chronic pain that localizes to the area of injury. This will not get better until you rest that muscle (which means no activity for a few weeks.)
You should talk to your doctor about these possibilities and see which one makes sense. With a normal pelvic ultrasound and ct scan, I would be more inclined to think you were having a problem with choice 1 or 3.

Ultimately if you have ruled out everything (diet change, muscle rest, bladder evaluation), you could have a laparoscopy to further evaluate unexplained pain.
The Ca 125 is nonspecific. Yes usually in women who have had hysterectomies, the value is in the single digits. At age 52 and with your uterus in place, you still are producing some Ca 125 protein from your uterus and a level of 32 is not unusual. I would recommend repeating the CA 125 monthly for 3-4 months. If you see a doubling in the value that suggests that something active is going on.  Otherwise, 32 is where you live right now. Please see my post from  7/15/2006 on “Understanding CA 125 fluctuations” for more on that.
Take care!

[sk2006a]

Iforgot to add, the colonoscopy revealed an "extra long colon" which sags into the pelvic region.

[sk2006a]

Thank you so much for all the valuable information.  I do have an appointment with a urologist this Thursday.

As for the CA125, I had read your "understanding fluxations" post, which is why I was concerned about my CA125 being so high for a postmenopausal woman (32).  After re-reading that initial post, I am now wondering if the optimal value you listed of 6 - 15 for the CA125 was for women with surgical menopause, i.e., no uterus??

Thank you again for the time you give to this forum!  When I read some of the postings on this forum, it's heartbreaking, and I feel guilty taking up your time with my problem!

Susan

[akg]

Hi Susan
yes The lower Ca 125 values are pertinent for postmenopausal women. Premenopausal women usually have higher baseline level. You are not taking up anyone's time!
best wishes

[sk2006a]

Thank you for responding again.  I just saw that you did!  

Now I am concerned.  If the lower numbers are pertinent for postmenopausal women, isn't 32 too high for me since I went through menopause some ten years ago?

Thank you again for your time!

Susan

[akg]

Hi there, why don't you get a repeat test. It has been a month. see where it is now.
take care

[sk2006a]

Hi Dr. - I had a repeat test last week, and I saw a second gyno at my gastro's request for a 2nd opinion.  the new number is 24, 8 points lower.  BUT, she gave me a vaginal US and said "i assume you know you have a fibroid".  No, i didn't.  i had two US in the old dr's office and two (all vaginal) at the hospital.  either it was missed or no one thought to mention it.  the new gyn thinks it's old, but i don't know.  can you tell you just looking at it?  and can you be sure it's just a fibroid?  it's only 9mm in size.  do i need to keep an eye on this?

Thank you again for your kindness and continuing to respond.  it's been so hard having my old doc of 32 years retire, and feel little confidence in the replacement.  especially since she doesn't return phone calls!

[akg]

Some ultrasound are higher tech than others. Fibroids do have a particular look to them on ultrasound. It sounds like you are ok.
Yes it is hard to lose your doc!
good luck

[sk2006a]

Well, that’s the interesting thing.  Before the new Dr. began the US, she warned me that her machine probably wasn’t as new as the others (and it definitely wasn’t as new or high-tech as the one at the hospital), and she immediately found the fibroid.  That’s what has me concerned that this is a new fibroid.  Is that a concern - developing a fibroid at my age and so far past menopause, and should I keep an eye on it?  Also, would a report from the hospital necessarily mention a 9 mm fibroid?  I can’t get anyone to return my phone call regarding the issue.

Hopefully that’s my last question for you :)  I‘m so impressed with the time and care you devote to this forum.  I  really appreciated your comment the other day regarding women on the forum who haven’t had a cancer diagnosis.  I’m sure there any many of us here who know SOMETHING isn’t right in our bodies, but either can’t get a definitive answer, or are getting conflicting information.  While our "problems" are nowhere near the gravity of those with a diagnosis, we're still plenty alarmed and seeking information.  Thank you again for your dedication and compassion!

Susan

[akg]

Hi Susan
sorry, I overlooked your question. Fibroids are definitely one of those mysteries of gynecology. Yes I probably would want to check again. I might suggest a repeat ultrasound in 3 months to seeing if the fibroid is getting bigger. If not, maybe check again in 6 months
best wishes to you

[sk2006a]

Hi Again...
Just in case you look over these old posts, I thought I'd post an update.  I had another U/S done at the hospital and I told the tech about the "alleged" fibroid.  She couldn't see one and took multiple pictures, saying she would explain to the radiologist why she had taken so many.  She also said the results would be compared against previous U/S and CT scan.  Result:  No fibroid!!  I have no idea what the second GYN saw, but it did indeed look like "something" on the monitor.  I am totally baffled and don't even know which GYN to see at this point in time.  

My latest CA125 was done Oct 9th, and the result was 22.8.  So I've gone from 32.4 in July, to 24.5 in September, to 22.8 in October.  Are these numbers too high in light of my NOT having a fibroid and my age, etc.??  Is it safe to walk away from any further testing in spite of still having a small amount of pelvic and pubic area discomfort?  I feel like I'm acting like a hypochondriac every time I walk into the doctor's office!

Thank you once again for all your insight, assistance and kindness.  
Susan

[sk2006a]

hmmm....I guess what I was getting at, in a roundabout fashion, was asking you if your previous statement that you thought i was probably okay was due to the thought that i might have had a fibroid, which would explain a higher CA125 for my age and state of menopause.  i guess i'm overly anxious since my sister developed breast cancer at the age of 50, and my mother had a hysterectomy at the age of 48 due to some sort of pre-cancerous condition (she can't remember exactly what it was, tho).  thanks again!