Endometriosis UK
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Anyone been referred for a CA125 test? Worried!

Hi all

I went for the follow up for my ultrasound today, I have endo on my bowel diagnosed but not removed two years ago.

Symptoms have got worse so went back for routine investigation. I have fluid on my ovary and a ruptured follicle. I also have severe bloating and abdominal pain.

My dr has ordered me to have a CA152 test to rule out ovarian cancer and I am just really freaked out. It caught me really off guard. I am sure it isn’t that and it is just my endo getting worse causing the symptoms but I am worried now. I am 28 with no children and couldn’t bear the thought of the big C.

Has anyone else been through this as a routine that can put my mind at rest or share an experience? My friends are saying not to worry and all will be fine but I am exhausted from fighting a constant battle and I am now frightened it’s hard to find anyone that understands!

Hoping someone out there can help or reassure me.

Thank you so much in advance 😊

14 Replies
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Do you mean a CA 125?

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Yes! Clearly my head is up my bottom!

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Jo Reilly has given a brilliant answer, nothing else to add.

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I had it taken several times on my route to diagnosis. The first one came back abnormal at 119 and the GP told me over the phone on a Friday afternoon that it was probably cancer, but it was not and I cannot stress firmly enough at this point that an abnormal result does NOT mean that you definitely have cancer (and a normal result doesn't mean that you don't have it either, because it only detects cancer 80% of the time if it is present). I had repeated tests that came back at 85 and 107 and had severe endo. It caused us months of hell and knowing what I know now, I would have refused to have it.

It measures inflammation and can be raised for lots of reasons, one being endometriosis. and is not cancer specific (and TBH given your age, the fact that you have endo and they didn't see a tumour on your ultrasound, I would question the GP choosing to do it.) Please also be aware that at 28 ovarian cancer is very, very rare.

Can you go back and see a different GP and talk it through with them?

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Thanks so much for your reply. My doctor has been pretty good in fairness to him, or his at least the only one at the practice who hasn’t shrugged off my symptoms. I saw a dr a few weeks ago that basically told me to live with it as part of my endo and it was only because I pushed for an ultrasound that anything has moved. The dr did reassure me that it’s probably not ovarian cancer but I was just so shocked.

Gynae issues and cancers do run in my family and that hasn’t helped my worry. I am also being referred to a bowel surgeon to see if I can have the endo removed off the bowel so I can’t fault my dr at this stage.

Have you been through something similar? Thanks so much for your response.

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If you have bowel endo you need to be seen at a bsge accredited endo centre (which will have it's own bowel surgeon). The list of centres is here and your GP can refer you to one. I had 2 surgeries at the big centre in London and had rectovaginal and bowel endo.

bsge.org.uk/centre/

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Hi hun. I got referred for the same blood test before having surgery. Like you I got really concerned and then when my dr phoned and said I had an abnormal result I panicked. My gynaecologist told me not to worry as it doesn't necessarily mean cancer even with the abnormal result. I had open surgery to remove 2 endometrioma cysts thats were 10cm and 12cm because they weren't 100% sure but it was confirmed after surgery it was endometriosis. So please don't worry about it!! I have also had a recent lap where my surgeon told me I had a frozen pelvis and a 15cm cyst, everything had stuck together but he has cut away all the endometriosis now and removed all adhesions so fingers crossed 🤞 I won't have to have surgery again... at least for a while!! P.s I'm 26 and also have no children so I understand how you are feeling! X

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Hi just read your story I have a frozen pelvis they say it’s so bad they are not prepared to operate even though I’m at a bsge hospital they say during the lap the couldn’t even see anything at all!!! It was solid!! 😢

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Understand your fear a ca-125 is used to try to detect cancer but it can be high but not necessarily cancer as it was with me a normal result is 0 to 35, mine was 60!

Generally high is classed as 700//800! They use it to determine chocolate cysts if high but not in the hundreds if that makes sense! The problem being is a lot of Endo symptoms mirror that of cancer so it’s easy to get confused & convinced I’ve been there for the last year just take each step as it comes as each scan, test, etc will slowly get to the root of your problem. Your very young for cervical cancer as it’s more common over 50! Stay calm & be positive. Good luck

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Yes twice that blood test. It's to see whether your blood has a change, that it contains a enzyme that's a precursor to cancer or cancer cells. If you have endorsed the risk of cancer is 4 times higher. Cancer in this area of the body is usually is a silent killer, the fact you have suffered symptoms is a good sign. The problem with endo it can cause many painful symptoms, the scares and adhesions, cysts, inflammation and damage to tissue/ organs changes their ability to function correctly when you have serious endo. The nerve damage alone sends signs that can be false, mirrored and its self is remember in a chronic disease by the brain which makes the inflammation.

My best for a negative test.

Hugs Joy

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The road to diagnosis requires a lot of courage. The fear and pain can be tough.

It sounds like your doctor is just being thorough and might simply want to get you a diagnosis and treatment as soon as possible. Better that they ARE thorough. The worst doctors are the dismissive ones who don’t run full tests.

My mum was told by a G.P. that he was 90% sure she had cancer. It turned out to be a cyst and endo. The fluid you show could be a ruptured cyst. I had fluid, too. Bloating and pain can be consistent with cysts/ruptures cysts AND it’s also consistent with endometriosis.

This is just a routine test. I think mine came back with slightly raised levels before I was diagnosed with endo and cysts. The samples they took during the laparoscopy came back clear for cancer.

The problem is that there’s a widespread lack of understanding about endo in the medical profession. An expert might handle your case very differently.

Good luck. x

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Thanks for your replies everyone they are very helpful. Trying very hard to stay positive! So hard when you are constantly battling!

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Hi Hun I went to my doctors with symptoms of pain, fatigue, reflux, needing to pee all the time, constipation, recurrent thrush and cystitis, headache and constant heavy bleeding and the GP basically gave me the full works.

I was referred for a transvaginal ultrasound, had swabs, a smear and a CA125 blood test. I asked what they were all for and my GP said it was just to cover all bases as symptoms of PCOS, endo and Ovarian cancer are all very similar.

My CA125 blood test came back normal, I was diagnosed with PCOS and am currently waiting for my laparoscopy and hysteroscopy to look for endo.

Don’t worry too much but is a good thing your GP is being thorough! Xx

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I have been experiencing the same pain and wondering if I may have bowel. I have always had problems with my bowels. But my Endo has gotten worse also. I don’t know if it could be from me being premenopausal. But seeing an GYN on the 18th. Hope she can shed some light.

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