please help raised ca125 small amount of fluid on abdomen

[happymummy4]

Please can someone help I am so worried. I've been having IBS symptoms, slightly irregular periods, weakness and pelvic pain. My CA125 came back slightly high and I was sent for an urgent pelvic ultrasound which was clear. I was then sent for an urgent abdominal scan and they found a small amount of fluid on my left kidney - which they were not worried about- and a small irregular shaped pocket of fluid between my pancreas and gallbladder so an urgent referral to gastroenterology has been sent but it may still be a couple of months!! Has anyone else been in a similar position. I'm 36 with two small children so I am very scared.

I have two friends who have been through similar and in both cases it was fine. It’s a good sign that you have a two month wait to see gastroenterology - if they were seriously concerned that you have some kind of cancer, you wouldn’t be waiting. Hold onto that, although it’s hard.

Thank you for your reply ProvincialLady, it helps to know that others have been in this situation and have been ok. I think it scared me because my GP talked about these 'C' markers and she could give me no idea why I would have the fluid there. She said that according to NICE guidelines the only reason I have not been given an emergency appointment is because of my age, it I was older it would have been 'an emergent' appointment - so scared!

I can’t speak for the fluid but I’ve had a few tests with raised CA125 and it turns out it can mean an awful lot of things that aren’t necessarily scary. It can be raised for eg if you have endometriosis and it fluctuates at different times of the month.

Endometriosis can be sometimes mistaken for IBS and it can also cause CA125 levels to be raised. A pelvic ultrasound would not detect endometriosis; this is often usually diagnosed through a keyhole surgery op called a laparoscopy.

Thank you everyone for your replies, I really appreciate your support. I'm trying to hold on to their being more 'innocent' explanations for it all. I don't know if endometriosis would cause fluid near the pancreas though? I did wonder about endo as I have very painful periods, though no fertility issues and until now have been as regular as clockwork.

She said that according to NICE guidelines the only reason I have not been given an emergency appointment is because of my age, it I was older it would have been 'an emergent' appointment - so scared!

I'm not surprised you're scared - it was irresponsible of your GP to say that without putting it in context. The reason your age comes into it is because cancer is relatively rare in under 50s, so it's usually when you're over 40 that certain symptoms mean you're put on the two week pathway. And even then, the vast majority of patients do not have cancer.

Regardless of your age, if the hospital suspected you had cancer they would be seeing you a lot sooner than 2 months.

Is there another GP at your surgery you could discuss your concerns with?

I had a run of raised CA125 and like a PP said it was my endo causing, a lot of endo is wrongly diagnosed as IBS