I am 45 and pre-menopausal. I have been experiencing gastro-intestinal symptoms that have been worsening over the past year, especially in the past few months. My GI doc looked into liver/biliary problems (all checked out ok); did colonoscopy (ok);endoscopy (ok) and finally ordered a abdominal/pelvic CT which found a cyst on left ovary and a transvaginal ultrsound confirmed.

My symptoms are worsening over the past few months (especially prior to ovulation). Symptoms are bloating, abdominal pain, lower back pain, indigestion, frequent urination, incomplete elimination. Abdominal pain and bloating get so bad I have to lay down after being on my feet or at work and it occurs for 7 - 10 days prior to ovulation. Feel lower left pelvic ache and upper abdoman "stitch" in area of diaphragm (under rib cage).
A Gyn/Onco doctor ordered CA-125, which measured 400. I am told that the CA-125 has a very high false positive, but is a reading of 400 also possible in a false positive test?

I feel so miserable, so I know something is not right, but should I be more worried or can this be a benign cyst or some other condition?
Did you find this post helpful?
|

replied July 5th, 2007
It is very possible that this could be a benign cyst. Usually when you get an ultrasound and there is a mass on the ovary it can be cystic (filled with fluid), solid (tumor which could be benign or malignant), or a complex cyst (some components are cystic and some are solid). Usually it is the solid and complex cysts that are worrisome. So it is very important for you to follow up with your doctor. In regards to the CA-125, it is not a good "stand alone test" for ovarian cancer, meaning that an elevated CA 125 doesn't unnecessarily mean that you have cancer. There are many benign conditions that cause an increase in CA 125 levels, and inversely there are women who have ovarian cancer that never have an elevated CA 125.

It is perfectly normal to be worrisome about your condition. I work with women in your exact situation everyday. Most women jump to the worst case scenario and have a lot of anxiety until the doctor tells them that they there is nothing wrong with them. Also, it is important for you to ask your doctors questions, most often times patients will leave with more questions than they came in with. So if you are still concerned or are experiencing a lot of pain I would recommend going back to your doctor.
|
Did you find this post helpful?

User Profile
replied July 5th, 2007
Active User, very eHealthy
I had a benign tumor on my left ovary and I feel your pain here-the bloating, the abdominal pain, the constipation, the peeing .A.L.L of the time. It was horrible!

If the transvaginal says it is just a cyst, it *probably* is. However, you are closer to the higher risk bracket for ovarian cancer. If I'm being too forward, I apologize, but is there any reason why you haven't gotten a hysterectomy or something of the sort?
|
Did you find this post helpful?

replied July 6th, 2007
Ovarian Cyst
Jude-Love,

Thanks for your reply and concern.

The transvaginal ultrasound results:
"Left ovary is enlarged measuring 5 x 3.9 x 3.2 cm. A 4.1 x 3.2 x 2.7 echogenic lesion occupies most of left ovary. the lesion completely fills in with echoes and may represent a solid mass. Could represent a solid ovarian neoplasm or a large hemorrhagic cyst filled with clot."

I have seen 10 different doctors [starting with my original GP, his back-up, his NP, my GI, new GP and her back-up, emergency room doc (GP thought cyst may have ruptured) and 2 gyn] in the last 6 months and the 2 gynocologists want to "wait and see" and regarding the worsening symptoms, they basically say "tough it out" - Thanks for the compassion.

I'm with you, if it is causing this much discomfort, lets get it out!

I am scheduled for another ultrasound next week and a trip to a gyn/onco doc the following week.
|
Did you find this post helpful?

replied July 6th, 2007
Ovarian Cyst
princess55

Thanks for the very thorough explanations!

I have more questions about the ca-125 test:

Is the test at least accurate for the amount of protein present in the blood
(400 U/ml in my case), indicating that something is causing this to be elevated (such as the cyst) and it could be considered "false positive" if it is not actually ovarian cancer?

Is the 400U/ml a relatively high amount or not?
What are the range of measurements?

Thanks
|
Did you find this post helpful?

replied July 6th, 2007
Re: Ovarian Cyst
Well the CA-125 test is a tumor marker that is used in conjunction with other tests (such as ultrasound and ct scans). It is usually not used to detect anything other than cancer, but the reason why it is not considered a good screening or diagnostic test is because of the high false positive rate.

For menopausal women a CA-125 over 200 is considered very high and could be indicative of cancer. However, I have come into contact with women who have had a CA-125 of 900 and their mass turned out to be benign.

As for the doctors, I am sorry to hear that they don't seem to be very compassionate to your situation. If you are concerned that this may be cancerous the best type of doctor to see is a gyne-oncologist. Ultimately, they are the ones who will be able to differentiate what is cancerous and what is benign. Also, for future reference, if the doctors think that your cyst is benign and they recommend surgery then a gynecologist is sufficient. However, if they want you to have surgery and they think that there is even a small chance that it is cancerous then the only doctor that should be doing the surgery is a gyne-oncologist, and if they don't then you should ask to be referred to one. Often times gynecologists will try to do this surgery and it is out of their realm.





casey06 wrote:
princess55

Thanks for the very thorough explanations!

I have more questions about the ca-125 test:

Is the test at least accurate for the amount of protein present in the blood
(400 U/ml in my case), indicating that something is causing this to be elevated (such as the cyst) and it could be considered "false positive" if it is not actually ovarian cancer?

Is the 400U/ml a relatively high amount or not?
What are the range of measurements?

Thanks
|
Did you find this post helpful?

User Profile
replied July 6th, 2007
Active User, very eHealthy
I know how you feel-I saw several different doctors and I was misdiagnosed every time! Kidney infections, UTIs....it was unbelievable. I'm glad you're going for another ultrasound though and they are starting to be proactive about this.
|
Did you find this post helpful?

replied July 7th, 2007
A doctor suggested a CECT Abdomen and a repeat CA-125.

What is a CECT?
|
Did you find this post helpful?

User Profile
replied July 7th, 2007
Active User, very eHealthy
I think it can detect abdominal complications. Like a .C.A.T scan?
|
Did you find this post helpful?
Must Read
What is PCOS? And when does polycystic ovary syndrome become a problem for women?...
Not all women with PCOS share the same symptoms but women with PCOS exhibit one of three main symptoms. PCOS signs and symptoms made clear here....
PCOS is often misdiagnosed. Educate yourself with some diagnostic questions that can point you in the right direction for an accurate PCOS diagnosis....