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CA-125 Rising

Gynecologic Cancers | Last Active: Jun 10 12:21pm | Replies (10)

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@jo72

I don’t know if this is any help at all. I have Ovarian cancer too, Stage 4. Here’s my experience with the CA125 test.
- I started off over 1700 but after hysterectomy, cancer debulking, and chemo, it went down to the low 20’s and has stayed there for over a year now.

- After the cancer debulking, the surgeon told me that he had had to leave several of the tumors because of their location but he felt chemo would take care of them.

- I started just Avastin after chemo and had been told I would be given that for 2 years. But after a much shorter time, my oncologist used the months of a low CA 125 to declare me cancer free and was going to stop treatment.

- I asked for a PET scan first and discovered that chemo hadn’t been successful and I still have several tumors in my abdominal area and one in the lining of my lungs. My cancer surgeon said that for me, the CA125 isn’t an accurate measure of my cancer.

- I’m still on Avastin 6 months later, it’s kept the tumors from growing, and my CA125 is still in the low 20’s even though I have cancer tumors.

After being diagnosed and learning about the CA125, I had talked to my GP and asked why they don’t give it with our yearly physicals and blood tests. She said because it’s too unreliable. You’ve probably read that. For me, I can’t depend on the CA125 and I needed to get imaging tests. BUT, I can totally understand why having it rise is really concerning you. I hope someone has a more helpful response that’s more directly related to what you’re encountering with melanomas. Keep asking questions. Keep advocating for yourself to make sure you’re getting the best medical care you can get. Since I was diagnosed, I’ve talked to too many women who had oncologists who made pretty major mistakes. I hope you’ve got a good one. 🙏🏽

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Replies to "I don’t know if this is any help at all. I have Ovarian cancer too, Stage..."

@jo72 :
This is very helpful information. It is consistent with what I have learned. The CA125 is not a definitive indicator of ovarian cancer as it is less/more sensitive in picking up cancer signals in some women than in others. As well one’s baseline pre-cancer can also differ. If your results are consistent over time but suddenly change it would signal cause for further investigation. I also agree that you are much more likely to get appropriate care in a major cancer clinic that is a teaching center than you would in a general hospital.
@jaymuss55: I would suggest getting an expert opinion as the original opinion that chemo can take care of the remaining tumours was incorrect in the first place. Btw, is there a theory about how or why your melanomas have sprung up?
It is really important to ask good questions and if the answers leave you wondering, don’t wait. See someone whose answers make sense. I wish you well and hope that you can get what you need.

Thank you for responding. I have been on Avastin for little over a year now, along with Keytruda, and Cytoxan. Once I started on this "cocktail", my CA-125 was in normal range until October last year, when the melanomas popped up, and it is continuing to rise. I get PET scans after three chemo cycles, and they check the CA-125 every cycle. I try not to worry too much about the rising CA-125, although it has gone up considerably, but try to focus on the PET scans being good - no activity or new implants. I had the debulking done in May 2022. Things looked good for a few cycles, but by August 2022, the CA-125 started going up so my oncologist started me on my second "cocktail" of chemo drugs. That worked for a while, but in March 2023, on my birthday of all things, CT scan was done and it showed small growth in size of a few remaining implants that were still there. That is when I was switched to my current regime of Avastin, Keytruda, and Cytoxan, which has worked well for me. I have been blessed not to have suffered any serious issues with chemo drugs, other than when I was on Doxil, which made my hands like they were sunburned, and the skin peeled and I was unable to bend fingers much. Other than fatigue, I feel okay most of the time. Sometimes it's hard for me to even realize I have this horrible disease going on inside of me. I try to remain positive, as there is so much negative stuff out there on length of life after diagnosis (which is why I try not to read much of it), but I remain positive, as I have a friend, who has a friend that was diagnosed with Stage IV OC, and she is still going at roughly 14 years post her diagnosis, so I do not give up hope. I admit, when diagnosed, I thought my life was over and I was devastated. I had worked with a woman who was diagnosed with OC back in 1998 and she died in 1999. I did not realize how far they had come with treatments. My first visit with the oncologist after diagnosis made me feel so much better, when I was told it is treatable. I give credit to God for giving the doctors the knowledge to know the best treatment for me, and prayers of family and friends. I know it is in His hands so I try not to dwell on it. But, I still seek an answer for rising CA-125...