I keep getting denied the CA-125 test!

[starrynight5626]

52 y/o post-menopausal and was diagnosed with a 3.5 cm endo on my ovary. They were unsure what it was after the CT scan, unsure after the ultrasound. I then asked if I could get a CA-125 test because my aunt had ovarian cancer. Doctor said an MRI was better suited as they'd have to do that anyways no matter what the test showed and that they would be more worried if it was a first degree relative (mom, sister, daughter) that had it. Ooookay, so much for taking my worry into account!

MRI showed it as the endo. I was given the option of laparoscopy or a wait and watch approach. OB/GYN said she thought it was a low chance for cancer and that waiting and watching would be ok because I really don't want to have surgery if I don't need it. I am having my 3 month u/S follow up next week but have been reading in so many forums about endos getting operated on and it ends up the person has stage 3 cancer and had no idea.

So I sent a message to my doctor asking if I could please get the CA-125 test before having my ultrasound so I could at least have some kind of idea pointing me in what direction to go. Just got a reply from another doctor who is "helping" mine with the short but sweet:

We generally don't recommend the testing, however you are seeing Ob/GYN on Oct. 11 and I would recommend you discuss it with them at that time."

Why is it so hard for them to refer me to the lab? Yes I realize that the test is not super accurate and could mean other things but at least it would give me something to go on. People in the UK seem to have no issue getting this test when they ask for it, but in the US it's like pulling teeth!

[cmania]

I think it’s time to see a different Ob/gyn. What I’ve found with this disease is you have to push. A ca125 may not give you the answer but agree this is not a huge request.

[starrynight5626 in reply to cmania]

I don't even know if she saw the message since it was another doctor who was helping her. That seems to happen a lot now when I send a message to HER but get some other random doctor or nurse responding to it.

Anyways, I took matter into my own hands and bought a test through Ulta labs and am going to a nearby lab this morning to get the blood drawn. It sucks that this will not be covered under my insurance and is out of pocket whereas if I could have done it at my clinic it would have been.

[Motiva]

CA 125 does have limitations but it is part of the diagnostic pathway and contributes to an overall assessment and planning. My CT and US were both ‘normal’ of my abdomen so they aren’t 100% sensitive either.

It is a low cost, minimally invasive test so no reason not to perform it, hopefully to help rule out OC.

I agree a new OBGYN needed. It is hard work insisting on something but until you are no given a scientific evidence based reason why not I would keep on asking.

F x