Did anyone test high for CA125, with elevated value of over 800?

@charlotte12 This must be very frightening for you however it's good that your surgery will happen so soon. Two weeks may seem like a long time to wait.

Did you have CT or MRI? Ultrasound? If yes for one of these what did the radiologist report?

I'm confused by the heading of your discussion as you wrote "Did anyone test high for CA125, with elevated value over 800? Your doctor said that the CA125 is not reliable for a cancer diagnostic so I'm wonder if that number is the value that was computed from. your CA125? It's difficult to accept, I know, but some tests are not very reliable. Here is what Mayo Clinic has about the CA125:

-- https://www.mayoclinic.org/tests-procedures/ca-125-test/about/pac-20393295

Did your doctor suggest what the mass might be? How are you feeling?

I read your other post mentioning the possibility of a uterine fibroid. There are definitely reports in the literature of very high CA125 levels (500-1000) in some women with large fibroids. But women with ovarian cancer also often do have levels that high or higher.

The problem with CA125 as a test for ovarian cancer is that there are both false positives (high CA125 but no cancer) and false negatives (cancer but no high CA125). So you don't know what is in there until they take it out and look at it.

Waiting to find out what's going on is the worst. I have my fingers crossed for you.

I first had an ultrasound, then an MRI. I hope I can keep the second surgery day, I'm still coughing too much, with greenish phlegm. In short the MRI shows a large, mixed, cystic/ solid mass
(about 12 x 12x15 cm) arising from the pelvis. The mass abuts the dorsal, distal uterine body/fundus and also involves the left adnexa which contains an oval cyst. The normal range for C125
is between 0- 30, mine is at 872. The doctor does not know what the mass is about or did
not want to speculate, till he can take a biopsy during surgery. I wished I did not have the cold,
my second week. I need to recover from it before the surgery.

Thank you for your reply. I'm eager to get the hysterectomy and the fibroid removed. I can
feel the mass is pushing against my abdomen.

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.

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.

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.

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

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

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.