Investigations due to high level CA125 and symptoms

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Good evening. I’m reaching out to see if anyone else has had similar experiences and can offer advice.

i went to gp with pain in lower abdomen, intermittent bleeding, bloating, change in bowel habits and fatigue. I had urine test followed by CA125. My initial level was 360. Following this I was referred for an ultrasound scan. I struggled with this scan due to the amount of water I had to consume and was so desperate for a wee. They had to ask me to empty my bladder as they said my tummy was too swollen. On examination the consultant stated there was no cysts and my ovaries were an average size.
a further CA125 test was completed and my level was 180 odd, definitely an improvement. However due to ongoing symptoms I was referred to gyni at the local hospital. The consultant was lovely and said they weren’t overly concerned. I had a endometrial biopsy on my uterus and some 6 weeks later I have been advised that there was nothing of concern there, however due to my last (3rd) CA125 reading being 580, she has referred me for a CT scan this week.

I spoke with her briefly as this has definitely been a slow process since my initial presentation to gp in March. I feel assured if there was any concern things would have been expedited?

the consultant did mention that if the CT scan didn’t show anything of concern, she would speak to me regarding an op to remove my ovaries/tubes. I guess as a form of reducing further risks.

can anyone offer any advice please?

thank you

latchbrook 2 months ago

Hi Blackpepper and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Bella Bee 2 months ago

The CT scan should give you the information you need. Be aware that even in a cancer hospital situation, there are huge time pressures on the scanners and radiologists who write the reports, so keep checking that you are on the list for an appointment, and after the scan is done, chase getting your results. I can't advise on your medical.situation , except to note that your CA 125 is high, though the up and down quality isn't typical of OC. Doubling over, say, a month or two would be a definite red flag. I think you've just got to sit it out now till you get your results. It will he horrible waiting, so do try to keep yourself busy. Good Luck.

Blackpepper 2 months ago in reply to Bella Bee

Thank you for the reply. I am awaiting the results of the CT scan next week and for a follow up. GP is expediting colorectal appt as there is a 48 week wait. I am also due another CA125 next week - let’s see what that brings. Thanks again

TreeMary 1 month ago in reply to Blackpepper

I Sam recently diagnosed with ca 125 over 3000 does anyone know if the higher the number the worse it is

RubyRosie 1 month ago in reply to TreeMary

Hi, Nornal levels of CA125 for women is around 35 anything above that can be associated with ovarian cancer although this isn’t a confirmation of cancer, it should be followed up with other tests to confirm such as a biopsy and ultrasound.
Confirm with your team or GP that these tests are being carried out if they haven’t mentioned them.

Pink Dalmatian 1 month ago

Hi Blackpepper- how are things now?

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Investigations due to high level CA125 and symptoms