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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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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Having had 4 cancer diagnoses in my life, one was a metastasis in 2002, and 3 different types of cancer, the latest in October 2021, I found the anxiety can be overwhelming if you let it run wild. I learned that we must take one day at a time. Don't let your mind play havoc with your "what ifs". Deal with the present. I was given almost no chance of surviving my metastasis for more than a few years. I accepted it and did my best with the life I had left. Here it is 22 years later and I made it despite all the odds, but now have a new cancer, bladder, from all the radiation in the past. If possible take some yoga classes, meditation classes, develop your spiritual side, spend some time in nature, give yourself some quiet time to just relax and focus on the now. Sounds like hocus-pocus to some, I understand, but I learned it helped me a lot in my cancer journeys. It helped keep my mind strong. I'll be sending out healing prayers and thoughts your way.

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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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Just FYI, as val64 stated above, the CA-125 has a lot of false positives and false negatives, so it does NOT confirm the diagnosis of cancer.
CA-125 is most useful after a woman has been diagnosed with ovarian cancer. The trend over time can be somewhat helpful in assessing whether a treatment is working, or whether we should worry that the cancer has come back. But many different things can raise CA-125 levels, even in a cancer patient. So if the trend is going up over time, doctors will order more tests (imaging, biopsies) to determine whether or not cancer is the cause.
A good analogy is a home security system that monitors for break-ins, fire, water leaks, etc. When the alarm goes off, you don’t know which problem you have, or even if you have a problem at all, because it could be a false alarm.
More investigation is needed to figure out why the alarm went off.

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Profile picture for chrissiebee @chrissiebee

Having had 4 cancer diagnoses in my life, one was a metastasis in 2002, and 3 different types of cancer, the latest in October 2021, I found the anxiety can be overwhelming if you let it run wild. I learned that we must take one day at a time. Don't let your mind play havoc with your "what ifs". Deal with the present. I was given almost no chance of surviving my metastasis for more than a few years. I accepted it and did my best with the life I had left. Here it is 22 years later and I made it despite all the odds, but now have a new cancer, bladder, from all the radiation in the past. If possible take some yoga classes, meditation classes, develop your spiritual side, spend some time in nature, give yourself some quiet time to just relax and focus on the now. Sounds like hocus-pocus to some, I understand, but I learned it helped me a lot in my cancer journeys. It helped keep my mind strong. I'll be sending out healing prayers and thoughts your way.

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your comments were helpful, I stopped reading about ovarian cancer- I don't even know yet
what I have. I have been doing some of your suggestions. I'm so sorry about your newest
diagnosis. I'm sending healing prayers your way.

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Profile picture for charlotte12 @charlotte12

your comments were helpful, I stopped reading about ovarian cancer- I don't even know yet
what I have. I have been doing some of your suggestions. I'm so sorry about your newest
diagnosis. I'm sending healing prayers your way.

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Thanks, Charlotte. Appreciate your prayers. My best to you.

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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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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

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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

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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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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 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 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 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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