Likely ovarian. Terrified. Anyone available for a hand hold?

[Ohjoyohbliss]

Blood test yesterday: Serum CA 125 level over 35 indicates possible cancer. Mine is 213. Shit.

DH knows and one friend but I don't want to worry anyone else until I know how bad it is; hence I've name changed for this post. I'd love to know how anyone else has coped / is coping.

CT scan Saturday and USS on Monday. GP has made 2ww gynae referral today.

Just to add that I had ovarian cancer, with a thickened uterus lining. My cancer was producing hormones, which affected my uterus. Anyway, that was all 11 years ago and I’m fine.

Even if it is cancer @Ohjoyohbliss it is not automatically a death sentence. We hear that word and immediately we think we’re dying.

I think today is your Consultant appointment isn't it, @Ohjoyohbliss? Good luck. Thinking of you and sending love ❤️

So I've seen the consultant and he thinks it's most likely NOT to be a gynae problem at all. Unfortunately the CT scan report is STILL not available and he will ask his secretary to chase it. He has ordered more bloods* and he will review the CT scan and bloods to decide further action, which may include a biopsy of the endometrium... but he might decide that's unnecessary.

He said a chest CT may be needed. He will review everything and refer me onwards as required. I'm glad about that because he's not saying "Not gynae = not my problem, go back to your GP".

He did seem concerned.

• CA199 and CEA. I haven't looked them up yet.

I asked the consultant about peritonitis and he said no - my abdomen is soft and it's typical firmer (he used technical terms which I can't remember. )

He did say - again I can't remember the technical terms - that on percussion, it didn't reverberate suggesting the cavity is filled with fluid.

According to Dr Google, CA199 seems to be CA19-9, an indicator for pancreatic cancer. Had that two weeks ago - it was borderline.

CEA is an indicator for bowel cancer and some others. So we're still thinking cancer, but still have no idea what.

Was there any mention of having the ascites drained?

Beamur Hugs to you .There are many reasons for this .Just to say I had ovarian cancer in 2024 .Hystorectomy and 6 sessions of Chemo .Now in remission . There is so much that can be done now. My friend is having imunotherapy .

I had a similar concern, though not with you blood test results. I was told at the ultrasound no ovarian cancer, no cysts, no cervical cancer, obviously no pregnancy either . I was absolutely bricking it too.

No. Still waiting on the CT report to see what's going on.

@Ohjoyohbliss I’m hoping no news is good news for you, I would have hoped if they picked anything worrying up on the CT scan it would have been sent through as a matter of urgency. Any time frame on the bloods or what happens next?

Thanks, but I don't think no news is good news, although I am always inclined to fear the worst. He never mentioned the C word but the bloods he ordered are tumour markers and he said we need to find the cause of the pain which could be liver, pancreas, colon etc.

My poo sample result was borderline. The report said it's unlikely to be colorectal cancer but should be investigated further.

Has anyone in your family had bowel or uterine cancer? Just thinking about Lynch Syndrome which is genetic. My friend's family have this.
It causes bowel and uterine problems.
I am so sorry that you are going through this very difficult time. I am glad the gynae did not write you off and send back to the beginning again. It must all feel impossibly slow. Sending a hand hold.

My mum died of oesophageal cancer and had previously had melanoma. Otherwise zero cancer in the family although admittedly it's a small family.

Today I'm feeling fed up and very cross that the CT report still isn't available. When I had it done, they confirmed that it was the highest urgency. It's now 15 days since referral and 11 days since I had it done.

If I had a private scan, how long would the report take? I can't bear the thought of having to wait this long again if they decide I need a chest CT.

I've remembered the consultant mentioning taking all the results to an MDT meeting, which I think is further confirmation that he thinks it's cancer.

My tummy hurts!

I've remembered the consultant mentioning taking all the results to an MDT meeting, which I think is further confirmation that he thinks it's cancer

Joy nothing anyone says right now is going to persuade you otherwise so I just want to say that I well recognise the emotional agony you’re in and I hope you get your answer soon. 💐

I'd be ringing radiology to speed it up.
Also the Consultants secretary

I don't have a number for radiology. I rang the GP on Monday (because they requested it) and they said there's nothing they can do to speed it up. The consultant said he would get his secretary to chase it so I have to trust that she does.

The radiology number will be on the hospital website

Keep telling everyone how it's affecting your MH

That can get things moving

It wasn't done in hospital, it's a community facility.

Sorry you are waiting so long for answers. Why did you get the blood test taken initially?

Could you get another blood test?

The wait must be so hard, I’m so sorry it’s taking them so long.
I’ve just had a look around to see if there are guidelines for reports being generated and I found this doc.

https://www.england.nhs.uk/long-read/diagnostic-imaging-reporting-turnaround-times/

The company that collected the scan… do they definitely have it marked as urgent? Is there a telephone number that you contact them to check this?

Sorry it’s been so hard, shouldn’t have to chase like this, but the result is important. Is there someone who could help you find the number to help you out?

I am fortunate enough to have private medical cover through my new job (having previously been in the public sector with no such perks) and I got to have an ultrasound and examination today at a Nuffield private hospital. It seems that I have a 3cm cyst on my ovary which was probably causing the pain but still having unpleasant bowel symptoms (going at least 5 times every morning) so waiting on a colonoscopy now.
I really hope the results are good for you, will be thinking of you.

Ohjoyohbliss I really hope you get some answers soon.
The results take a while as they have to get the whole picture.
Imagine if they told you something that wasn't the whole picture.
I hope they are just being thorough.

For ovarian cancer, your CA125 has got to be in the 1000s.. it will probably be as @lissetteattheRitz has said

Do not be passive. Suggest you phone and firmly ask to speak to the radiology operating service manager at the hospital where you had the scan. This is an appalling wait for suspected cancer. It should have been reported the same day.