My Ovacome
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Ca125 clear but showing symptoms of ovarian cancer??

Hi I'm a new member here just queering as ive just had my bloods results back and it normal. I've put weight on lower abdomen I look 6 months pregnant, also hurts when my stools move through lower abdomen its thats bad it like contractions pain... having 3 kids I know!! I'm always getting full quickly to just need advice on it really! Thanks for taking time read

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Hi

Have you had any scans (internal or CT)? If you are having issues then I would definitely be going back to GP asking for further test and a second opinion. I was diagnosed with stage 3 OC with an elevated CA125 but didn't have the symptoms you are experiencing. Definitely worth pursuing options with your GP. Good luck xx

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Hi and welcome. I'm sorry you find yourself here, but before you start worrying, I'd definitely go back to your GP and request an Ultrasound scan at the very least. Your symptoms could just be something benign like a regular ovarian cyst, but it is definitely worth checking out to be on the safe side. Do keep us updated...we're a lovely lot here xx P.S. I had similar symptoms to you and low CA125 and was diagnosed with a very large (15cm) mucinous tumour in my right ovary (stage 1a)...so i was a lucky one! x

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Agree with both Katmal and Mrs Atko and another option is to talk to Anna, the Support Nurse at Ovacome - use the freephone 0800 008 7054.

Warm wishes, Lesley

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Many doctors only use the CA125 when the patient insists, do to the high number of both false positive and false negative results. Some women have been confirmed with Stage IV OvCa and their CA125 showed no increase.

The Trans-vaginal Ultrasound can detect tumors and cysts as small as 7-8 mm, if you have one of the 60 types that develops a growth. Not all of them do.

Although my wife’s CA-125 was over 120, her Oncologist wouldn’t accept it as proof and wanted to do a Colonoscopy to check for Colon cancer, even though that blood matter was negative. I referred him to the CT scans in her files to prevent him doing the needless test.

Her X-rays, T-V Ultrasound, and CT scans were all negative, but the PET scan confirmed she was already as Stage IV-B

If you go to DoctorOz.com and search “Ovarian”, you can find his symptom tracking chart. If the symptoms persist for 12 or more days per month, keep it updated and take it to your next appointment.

I use the BEAT symptom cards from NormaLeah.org I get from Jodie 500 at a time to distribute widely across Texas and Louisiana. Ovacome may have something similar, but I prefer the symbolism of BEAT as a mnemonic.

If possible, ask to be seen by a Gynecological-oncologist as they have a much better working knowledge of OvCa than the basic OB-Gyn.

Sadly, we have no Gyn-oncologists within 100 miles.

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If you're in the UK:

ovacome.org.uk/campaigning-...

You've still got those troubling symptoms, keep going back to the GP for more investigation, till you get to the bottom of it. Don't be fobbed off.

Was a CA 125 test included in the blood tests that were done? If not, ask for one.

Best of luck!

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I found this site last year, I was getting all manor or weird stuff going on. Had bloating, pain in pelvis, back, weird taste thing were I couldnt stand food I loved. Urgency to urinate, tired, ect. Nothing really found on us but second us found hemarrahgic cyst. While waiting for next test id had bloating for 3 months then one day gone. The cyst has gone too. I had the c125 test they said it was raised, started panicking, later found out it was only 17. But does indicate imflamation. Had laparoscopy last week to look for endometriosis, not found but found myometrial cysts at the back of womb. So now got mri to look for adenomyosis as this causes cysts like that. Worth persusing if it carrys on.

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Hi. Sorry to hear you are having these symptoms. I agree with what has already been said. Further tests are needed starting with an ultrasound scan. I was diagnosed with ovarian cancer stage 1c ( clear cell ) in June 2014 and my CA125 was only 26 and told it was normal ie below 35. However I had other symptoms such as needing to urinate more often and I also felt full all the time. I am not sure if your fullness refers to bladder or stomach. My fullness meant I was unable to eat my normal meals,only managing about a third to a half. I also lost my appetite -never had that happen before! This was accompanied by severe acid reflux. Ultrasound and then MRI scans showed I had a 12 cm tumour on the right ovary! They thought it could be benign but it was in fact cancerous.

Do try not to worry but a low CA125 does not always rule out Ov Cancer as in my case. You will hopefully be fine but be better to get fully checked and find out what you are dealing with.

All the best.

Angel-teal xx

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I was misdiagnosed for a year until my GP saved my life because she didn’t like how my abdomen felt. She insisted on a CT Scan and sent me to a surgeon when she saw the results. I had a huge cyst in which there was a malignant Brenner tumour. I was very very lucky that it was 1A mucinous high grade - all encapsulated. I did chemo after debulking surgery because of the high grade. Two years later and everything is still clean. Insist in further testing and scans. Yours could be something completely benign but it certainly must be something. I had a distended abdomen, intense back pain, and very frequent and urgent need to urinate For a year. Don’t wait.

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