Hi everyone. Looking for your personal experience of CA125 monitoring. How did you deal with it, personally? What did your doctors (oncologists, family physician, etc.) say to you about the subject?
A month from now I have a regularly scheduled meeting in person with my oncologist. But after my blood test this week I placed a call with their office to see what they thought about the latest CA125 count. (I will share here below a few details about my treatments, knowing that there might be a few keyword searches that will lead here, to this discussion, and thus that my own personal experience might help others going through something similar - or be of benefit to others by demonstrating the variety of directions that treatment can take).
In July 2021 I was diagnosed with high grade serous carcinoma and treated immediately for a pleural effusion. I know that statistically a pleural effusion is about as bad as it can get when it comes to outcomes (of course: "I am not a statistic", and I am an athlete who is very fit, eat well, meditate, etc. etc.). Last December I finished first line treatment (carboplatin/paclitaxel and total hysterectomy); and I started on a maintenance treatment/targeted therapy of niraparib in late February. In January my CA125 was 7.5, and since then the number has been increasing gradually into the teens and twenties, a couple of points every month. However, this week the blood test result showed that the number rose from 23 to 34. I know that this is still too low a number for my oncologist to initiate a change in treatment, as the rise in number could be due to any number of factors unrelated to ovarian cancer; and anyway, if the CA125 is an indication of cancer growth, the amount of tumor present right now is not likely to show up on a CT scan.
Furthermore, there is not much benefit from rushing into taking more chemotherapy since it is an ineffective form of treatment ultimately because of a cancer cell's ability to mutate. The oncologist told me that they would consider making changes when the number shoots above 50 (which is a standard approach). My understanding is that given the paucity of treatment options for this cancer, holding off as long as possible on another few rounds of chemotherapy is better. Furthermore, my oncologist told me that there was not necessarily any point in increasing the dose of niraparib since there is not much difference in outcome between people taking 100mg niraparib daily, like myself, and those on the higher daily dose of 200mg (I started on 200mg, but after seeing problems with my chemistry the oncologist reduced the dose).
So, I am curious to know at what point people made changes to their treatment: were changes made because of the CA125? Or did you wait until you developed a tumor that could be seen in a CT scan; or until you had symptoms such as pain, or bloating, or a pleural effusion? How did the conversation about treatment go with your oncologist?