Post debulking my CA125 was 311. Following the first chemo it has leapt to 513! A week before the blood tests I had a clear CT scan.
I’m really frightened now about it. I had optimal surgery with no residual disease and am stage 3a.
I haven’t had any infections or anything to explain the rise, other than the usual chemo side effects and am generally well.
Help!
ca125 can raise for many different reasons and although it is understandable you are worried I'm sure they would be doing something for you if they were concerned. Are you able to phone your cancer nurse specialist to talk it through? Sending love and hugs x
thank you for your reply.
I have spoken to my oncologist, she wasn’t massively reassuring. She said that it can happen and be one of those things, but she wants to raise it in this weeks MDT to see if they think I should have a different type of scan (she didn’t say MRI or PET) just in case. Which really just compounded my worry as the clear scan is my safety blanket and now I’m worried they missed or couldn’t see something!
This whole journey is a bit rubbish isn’t it. X
It sure is X
Hi there. Sounds like your oncologist is on the ball ,but while you're understandably worried, just keep on pursuing it ,as i have had a bad experience with the outcome of a CT scan, so it never hurts to look again. Hopefully there is a simple explanation, but you have to advocate for yourself and seek profesional reassurance. Use the Mc millan or specialist nurse too.It will help keep the focus on you. Do hope the issue is resolved soon, and try not to worry too much meanwhile. Easy to say i know,but once you have done all you can ,you may feel more able to handle the uncertainty. X
As I am reading it you had surgery, then chemo.
I wonder if the chemo has upset your deeper tissue which may still be healing? If you have inflammation in the body this can drive up the ca125. With some chemo it seems to be recognised that the ca125 is likely to climb before falling, so keep calm, there may well be an explanation xx
I hope so! I had debulking surgery 12 weeks ago, my first round of chemo was 8 weeks post surgery.
My oncologist has called today and referred me to a PET scan as the MDT decided they would rather look now than see what happens over the next courses. Very nerve wracking!
I know how nerve wracking this is, but I tend to agree with what Lyndy has said. Could be that deeper tissue still has inflammation and perhaps the chemo is also driving that up. Your surgery was only 12 weeks ago (I think), so there's still a lot of healing going on. Good your oncologist has ordered PET scan. They might just also want to get a base line of where you are now especially if you didn't have a PET before surgery. I'm also 3A (HGS) - diagnosed 7yrs ago, so hold that thought! Sending love and hugs xx
Just try not to worry too much, the team have recommended a PET scan which although is scary, they are doing the right thing for you. I have learned over the past year ( I was diagnosed just under a year ago stage 3c peritoneal) that we are all have slightly different reactions to the various drugs and treatment. So hang in there! I hope you get a positive result but if like me you don’t, the team will be planning the next step in treatment and bringing out the next drug in the ‘arsenal’. Good luck , be brave and live your life! X💕
just sending hugs and hope that the PET shows nothing new. Xx
have you recently had a Covid booster? My Oncologist said that they had seen an increase in ladies CA125 after Covid booster. In any case, lots of reasons it can rise. I wish you well. Xxx
There is a test called a Circulating Tumor Cell test that originated in Switzerland in 2004 called the RGCC test. Some integrative oncologists utilize it in the US. There is a version of it that was FDA approved a couple of years ago. One company that does it is called CellSearch but there are a bunch more. This is a simple blood draw. If any circulating tumor cells (cells that have broken off from an existing tumor) or tumor DNA is found then they are able to tell where in the body the tumor originated as well as any genetic mutations. This could help with early recurrence detection as well as matching with treatments based on genetic mutations. This test is essentially a liquid biopsy and is able to detect tumors before they are even large enough to appear on a scan.
Most oncologists don’t use it for “clinical application” yet because its supposedly “new” technology even though its been around since 2004. MD Anderson just adopted it under standard of care at their practice 2 years ago. Your oncologist could order the test even if they don’t typically do so. This might give you a better idea of your situation instead of waiting and watching on scans. If any circulating tumor cells are found the original RGCC test can even test 53 types of chemo on your cells to find out if they are chemo sensitive.
There is a Bill in the Senate that was introduced in 2021 called the Medicare Multi-Cancer Early
Detection Screening Coverage Act that is pushing to have this test covered by medicare as a screening and early detection tool for the general public as well as a way for cancer patients to be monitored after treatment. I just spoke to my oncologist about it and after some insisting he agreed to order the test. This might help you have some peace of mind if you have a more accurate screening tool utilized like this blood test and a better assessment of your condition.
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