CA-125 Results Went Up: Should I be concerned?

Posted by stparker54 @stparker54, Aug 26, 2020

The results of my CA-125 tumor marker test increased from 16.8 to 20.3. This is the fourth time I've had a tumor marker test and it's the first time there was an increase in the results. How concerned should I be?

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I was diagnosed with Stage III-C ovarian cancer in February 2022. I had complete hysterectomy, appendix removal, and partial stomach lining (omentum) removal in May 2022. Still in chemo (on my third combination of drugs - Avastin, Keytruda, and Cytoxan). This has been working well for me overall. I feel fine, and my PET scans show no activity or new implants. But, my CA-125 has been steadily rising since last October 2023. At that time I was diagnosed with three melanomas on my left leg. In December 2023, I was diagnosed with two melanomas and one borderline melanoma on upper body. Last month, I was diagnosed with two melanomas, one on back and one on arm. My CA-125 was in normal range until the melanomas started popping up. It has steadily increased since October and is now at 295 as of this week. My most recent PET scan, last week, indicated no activity or implants visible. My oncologist is monitoring the CA-125, but says they rely on imaging more than the blood test. It still worries me that CA-125 keeps rising. There doesn't seem to be any connection between melanomas and increasing CA-125. Does anyone have any thoughts on this? As I indicated, I feel fine, no pain, do normal activities; just some fatigue. Thanks for any input.

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Profile picture for val64 @val64

Do you mind if I ask what clinical trial you're in? How did you pick that one?

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I was given 4 options after the 1st Clinical Trial failed. That one was Keytruda and miraculous until it went overboard on my immune system.
The 2nd and current trial includes Verzenio (Abemaciclib) & Letrozole because the tumor is estrogen based. These are breast cancer drugs, so the "trial" part is to see about Uterine cancer.
The same trial was performed at Dana Farber, Boston with a small group with good results.
The trial is 18-301 on their website. My trial is at UCLA, the Dana Farber study is closed.
I was given 3 other options. More chemo was an easy NO!
I have info on the 2 other options, but not handy.
The goal is SD as in Stable Disease as determined by CT scans.
I hope this helps.

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Profile picture for crowleykid @crowleykid

My doctor and I ignore the CA 125 test results. I'm in a clinical trial, so they test for it monthly. It doesn't seem to be meaningful for me.

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Do you mind if I ask what clinical trial you're in? How did you pick that one?

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Profile picture for charlotte12 @charlotte12

Did anyone test high for CA125, with elevated value of over 800?I have a big abdominal mass arising most likely from the right ovary, and a cyst with abnormal enhancing soft tissue involving the left adnexa. Surgery in 2 weeks. I have no pain, bleeding or other symptoms accept a tight abdomen from the mass. The doctor says the CA125 test is not a reliable indication for cancer.

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My doctor and I ignore the CA 125 test results. I'm in a clinical trial, so they test for it monthly. It doesn't seem to be meaningful for me.

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Profile picture for mab3461 @mab3461

I think all my tests were done via Labcorp but I don’t know if it’s the same one. I didn’t know that I had the test done in 2019. I found it in my records. I’m just not going to worry about it. It seems that as long as it’s under 35, I don’t have to worry.

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@mab3461 Thank you for coming back and letting us know that you went back through your records and what you figured out. I hope that @val64 reassured you as she has a lot of knowledge about lab tests.

I can understand your worry as even though my. own cancer history is a low grade tumor (endometroid adenocarcinoma, FIGO Grade 1, Stage 1a) the worry is often in the back of my mind. For myself I don't try to push away the worry. I let it be there and check in with myself to notice how I'm feeling. Usually the worry has dissipated.

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Profile picture for mab3461 @mab3461

I had F1 endometrial cancer in 2019. It is related to Lynch syndrome. My post operative CA125 was 20 taken about 12 months after my hysterectomy. They never tested me again. I have my last follow up in August. On my own, I had my CA125 tested last week and 3 months ago. 3 months ago my level was at 28. Last week it was at 31. Should I ask for an earlier appointment?

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I think all my tests were done via Labcorp but I don’t know if it’s the same one. I didn’t know that I had the test done in 2019. I found it in my records. I’m just not going to worry about it. It seems that as long as it’s under 35, I don’t have to worry.

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Profile picture for califcheryl @califcheryl

I had TIA mini stroke in Nov so doctor wanted to wait for at least 6 months before during surgery. And they found some of the cancer cells In the abdominal wall which they found out with the PET scan. So that also drove decision to do some chemo first.

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thank you for clarifying, so your situation and health is different than mine, sorry to hear about all the complications. The chemo treatments are working. I keep you in my thoughts.

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Profile picture for charlotte12 @charlotte12

thank you for your sharing your story, my oncology doctor never suggested a PET scan,
what was the reason for doing chemotherapy first?
My dr. wants to do full hysterectomy, removal of mass, remove ovaries, test tissue during surgery for cancer with tumor markers during surgery, potential remove tissue, more ovaries which may be effected, the ultrasound showed mild pelvic fluid,
I'm 69, I wonder now if I need a second opinion. I only felt bloated after a meal. I have to overcome my cold before getting the surgery. Please respond back.

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I had TIA mini stroke in Nov so doctor wanted to wait for at least 6 months before during surgery. And they found some of the cancer cells In the abdominal wall which they found out with the PET scan. So that also drove decision to do some chemo first.

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Profile picture for califcheryl @califcheryl

I have a similar chemo. cyst. Size of a grapefruit. My CA 125 was2261. In early feb.
They did a PET scan feb 15th which more formally detected cancer cells.
Have had two chemo infusions so far and my CA 125 after first round jumped down to 1009. Doc says this is the number they watch to get indicator on progress of chemo. I also had alot of ascites-abdominal fluid. Been drained 3 times..9.4L, 6 L, and 8 L..about 3weeks apart. I was so bloated and felt like I was 7 to 9 months pregmant. They tested this fluid and also confirmed cancer cells. Fortunately the cancer cells seem to all be contained within abdominal cavity. I am scheduled for 4 chemo
3 weeks apart and then full hysterectomy..I am 67 yrs old. So do not need any female organs any more! and then a few followup chemos. After surgery. @kristinfloyd1 This might be helpful to you

Jump to this post

thank you for your sharing your story, my oncology doctor never suggested a PET scan,
what was the reason for doing chemotherapy first?
My dr. wants to do full hysterectomy, removal of mass, remove ovaries, test tissue during surgery for cancer with tumor markers during surgery, potential remove tissue, more ovaries which may be effected, the ultrasound showed mild pelvic fluid,
I'm 69, I wonder now if I need a second opinion. I only felt bloated after a meal. I have to overcome my cold before getting the surgery. Please respond back.

REPLY
Profile picture for charlotte12 @charlotte12

Did anyone test high for CA125, with elevated value of over 800?I have a big abdominal mass arising most likely from the right ovary, and a cyst with abnormal enhancing soft tissue involving the left adnexa. Surgery in 2 weeks. I have no pain, bleeding or other symptoms accept a tight abdomen from the mass. The doctor says the CA125 test is not a reliable indication for cancer.

Jump to this post

I have a similar chemo. cyst. Size of a grapefruit. My CA 125 was2261. In early feb.
They did a PET scan feb 15th which more formally detected cancer cells.
Have had two chemo infusions so far and my CA 125 after first round jumped down to 1009. Doc says this is the number they watch to get indicator on progress of chemo. I also had alot of ascites-abdominal fluid. Been drained 3 times..9.4L, 6 L, and 8 L..about 3weeks apart. I was so bloated and felt like I was 7 to 9 months pregmant. They tested this fluid and also confirmed cancer cells. Fortunately the cancer cells seem to all be contained within abdominal cavity. I am scheduled for 4 chemo
3 weeks apart and then full hysterectomy..I am 67 yrs old. So do not need any female organs any more! and then a few followup chemos. After surgery. @kristinfloyd1 This might be helpful to you

REPLY
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