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CA-125 levels were very high pre-op, but no cancer found CA-125 levels were very high pre-op, but no cancer found

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  #1  
Unread 04-11-2017, 03:29 AM
CA-125 levels were very high pre-op, but no cancer found

On 3/21/17, I had a TAH with removal of both ovaries, tubes and cervix. There were several ovarian cysts (10 cm, 4.5 cm & several smaller ones). There were two large uterine rumors removed. There was no cancer found in anything.

Two months before my surgery, when we found the large cyst, the gynecologist tested my CA-125 and it came back 1250. He refused to see me anymore (this was the day before my scheduled surgery) and sent me to an oncologist. The second doctor tested me and got a CA-125 of 200. So everyone was convinced I had ovarian cancer. But I was extremely blessed and I did not.

But what do those weird CA-125 numbers mean? What questions soul do be asking my oncologist or my PCP?

I was (am?) several anemic (3.6 hemoglobin, then 6.3 and 6.4 a few months later). And my WBC was high even for me (mine stays around 11). Did these affect the CA-125? False positives? Means nothing?

Any info would be much appreciated.
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  #2  
Unread 04-11-2017, 04:26 AM
CA-125 levels were very high pre-op, but no cancer found

  Quote:
Originally Posted by Clwaller View Post
On 3/21/17, I had a TAH with removal of both ovaries, tubes and cervix. There were several ovarian cysts (10 cm, 4.5 cm & several smaller ones). There were two large uterine rumors removed. There was no cancer found in anything.

Two months before my surgery, when we found the large cyst, the gynecologist tested my CA-125 and it came back 1250. He refused to see me anymore (this was the day before my scheduled surgery) and sent me to an oncologist. The second doctor tested me and got a CA-125 of 200. So everyone was convinced I had ovarian cancer. But I was extremely blessed and I did not.

But what do those weird CA-125 numbers mean? What questions soul do be asking my oncologist or my PCP?

I was (am?) several anemic (3.6 hemoglobin, then 6.3 and 6.4 a few months later). And my WBC was high even for me (mine stays around 11). Did these affect the CA-125? False positives? Means nothing?

Any info would be much appreciated.
Its not per say a false positive however, a CA-125 is not exactly accurate in determining cancer, tumor marker..In fact, as soon as it was determined that you had a uterine fibroid, not too much emphasis woyld have been on that test. Further test could have been performed for the fibroid +...Ultrasound, CT scan, possibly a hysteroscopy biopsy, +0.

The CA-125 numbers vary w your cycle as the fibroids give off hormones w cycle fluctuations. Youll have to be rechecked for anemia post op. Your Dr may wait a few weeks out.

Years ago, I had moved & a new Obgyn ck CA-125 on me & an ultrasound. She told me I had cancer & that "she" needed to perform a hysterectomy right away. I was so upset. My husband questioned her & said these tests are not sufficient. I had a 2nd opinion & immediately, the 2nd Dr told me the CA-125 is not sufficient determination bc of the fibroid. I did not have cancer.

Youll want your Drs to review the pathology results with you on your post op appt. Youll usually have a post oo appt w the surgeon. Ask about if/when future appts & tests. Discuss the anemia & WBC.. Review post op restrictions.

Here's to your continued health & recovery! 🌻
  #3  
Unread 04-11-2017, 11:22 PM
Re: CA-125 levels were very high pre-op, but no cancer found

Thank you. I usually feel that unless I ask the "right" questions of my docs, I don't get what I'm looking for. I just don't know enough to ask the questions properly. This info helps; I feel less panicked.
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  #4  
Unread 04-11-2017, 11:43 PM
CA-125 levels were very high pre-op, but no cancer found

  Quote:
Originally Posted by Clwaller View Post
Thank you. I usually feel that unless I ask the "right" questions of my docs, I don't get what I'm looking for. I just don't know enough to ask the questions properly. This info helps; I feel less panicked.
Great! Its the same thing with every profession, you have to be your own advocate.. To be or get informed & ask the right questions, we need to educate ourselves- almost feel like we need a medical degree, law degree, become a certified mechanic, etc!
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