Ovarian ultrasound yesterday. Referred urgently for a CA125 blood test- scared

I had an internal ultrasound on my ovaries yesterday after being referred by my GP for irregular bleeding between periods, heartburn and abdominal pain during certain activities which have lasted about a year now.

I was actually pretty relaxed about the whole thing, thinking it was probably going to be clear, and that it was probably all down to hormones or something else unrelated. Ovarian cancer is rare at my age afterall (34)

Now I'm in pieces. I got a call first thing this morning saying I needed to go to the hospital and get a CA125 blood test as soon as possible. It was advised by the radiographer that I get that as soon as I can. My heart sank. They must have seen something very worrying.

I was told to come into the surgery and get a form to bring to the hospital to pathology. I asked if there was any more information they could give me and they said sorry they couldn't tell me anything over the phone. So I took the form into the hospital and was tested there an then.

Now I have to wait for results to see if I might have ovarian cancer. I have no idea how long that will be, and I'm beside myself. My boyfriend broke down into tears which made it all worse, as I don't want to put any undue stress on him. He's a highly educated and logical man, always finding the facts and positive outcomes, so seeing him in that state was so upsetting.

I'm also aware that the CA125 test isn't very reliable in younger women, so I'm nervous that something is bad and will get missed.

The blood test form said there was an ovarian cyst, but one that needed investigating. No information about what kind or size it is, no hints as to how urgent this was. I'm so worried. In my experience, the blood test comes first and the ultrasound gives more information...so why is it being flipped? Is it routine for the NHS to test the blood AFTER the ultrasound shows something? Would love to know. I'm avoiding Google as it's a minefield.

I'm just wondering if anybody else has been through something similar? Specifically if you had imaging THEN a blood test. That's the bit that's sticking out as an alarm. Does it possibly mean the ultrasound showed something malignant and now they want bloods to confirm? I always thought the ultrasound was the next step after the blood levels are tested.

I'm exhausted already and it's barely lunch time. I'm trying to keep a really positive face on for my boyfriend but the anxiety over this is building up in my head and I needed to get my thoughts down.

I know literally nothing about this 'area', nothing, so can't offer you any advice on the process and the tests. I just saw that you had no replies and didn't want to 'walk on past'. Waiting for test results is terrifying enough as it is, without having symptoms to start with and all the unanswered questions and confusion about the stages of testing. I'm really sorry you are facing this awful wait and uncertainty about something that is frightening, and I so hope you get an answer/s soon.

Thanks for taking the time to reply, it's much appreciated :)

From what my scant knowledge on this tells me, there will likely be a few follow up tests and procedures to investigate things, so I probably won't know anything immediately. Just trying my best to stay calm (and refusing to Google!)

Google certainly won't get you answers, good on you for resisting, it'll only take you on a roller-coaster between panic and calm and panic again. We 'think' we are experts after reading a few articles on something, but never are ;) I do hope you get someone who comes along soon who can help a bit more than me.

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Originally Posted by WorryRaptor

I had an internal ultrasound on my ovaries yesterday after being referred by my GP for irregular bleeding between periods, heartburn and abdominal pain during certain activities which have lasted about a year now.

I was actually pretty relaxed about the whole thing, thinking it was probably going to be clear, and that it was probably all down to hormones or something else unrelated. Ovarian cancer is rare at my age afterall (34)

Now I'm in pieces. I got a call first thing this morning saying I needed to go to the hospital and get a CA125 blood test as soon as possible. It was advised by the radiographer that I get that as soon as I can. My heart sank. They must have seen something very worrying.

I was told to come into the surgery and get a form to bring to the hospital to pathology. I asked if there was any more information they could give me and they said sorry they couldn't tell me anything over the phone. So I took the form into the hospital and was tested there an then.

Now I have to wait for results to see if I might have ovarian cancer. I have no idea how long that will be, and I'm beside myself. My boyfriend broke down into tears which made it all worse, as I don't want to put any undue stress on him. He's a highly educated and logical man, always finding the facts and positive outcomes, so seeing him in that state was so upsetting.

I'm also aware that the CA125 test isn't very reliable in younger women, so I'm nervous that something is bad and will get missed.

The blood test form said there was an ovarian cyst, but one that needed investigating. No information about what kind or size it is, no hints as to how urgent this was. I'm so worried. In my experience, the blood test comes first and the ultrasound gives more information...so why is it being flipped? Is it routine for the NHS to test the blood AFTER the ultrasound shows something? Would love to know. I'm avoiding Google as it's a minefield.

I'm just wondering if anybody else has been through something similar? Specifically if you had imaging THEN a blood test. That's the bit that's sticking out as an alarm. Does it possibly mean the ultrasound showed something malignant and now they want bloods to confirm? I always thought the ultrasound was the next step after the blood levels are tested.

I'm exhausted already and it's barely lunch time. I'm trying to keep a really positive face on for my boyfriend but the anxiety over this is building up in my head and I needed to get my thoughts down.

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I had to have an urgent hysteroscopy after a transvaginal US showed my womb lining to be a lot thicker than it should have been and the reason I was there was because I'd had a post-meno bleed. Scary stuff eh? I worried myself sick and was given the all clear on a Christmas Eve. My point is that I thought the very worst and it turned out to be nothing serious at all - despite the urgency and fast tracking.

Things other than OC can raise CA125 levels - ovarian cysts (which is what is suspected with you) endometriosis can raise the levels - and in a young woman, these are far more likely than cancer.

Sounds really scary for you! Glad it all turned out to be ok. It must have been a lovely feeling of relief to get the all clear in time for Christmas!

So a doctor called me today, first thing in the morning. She was really lovely and actually explained what the cyst looked like and what the plan was forward. She also told me my CA125 came back at 15, which is a good score. She then went on to tell me that I have a questionable complex cyst on my right ovary. It is 2cm by 2cm, so not large. She told me not to panic and to stay positive, and that she was referring me for an urgent 2 week appointment with the gynaecologist to investigate the cyst for cancer. She said this didn't mean it's definitely malignant, just that it warrants looking into with more detail as soon as possible. She told me that some complex cysts are benign, so don't worry quite yet.

Still scared, but more calm now that I actually have some information.

OK, good, glad the doctor called and you were able to get your questions answered and some more information. That makes a big difference doesn't it, having someone to listen and answer, you feel a tad more in control once you have a plan of action clearly explained. (having been at that point myself, I know what a difference it can make not feeling that you are clutching around in the darkness of your mind) Of course you will still worry, but the important part is that all the medical tests and checks are taking place, to find out what is going on at an early stage incase other treatments are needed.

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Originally Posted by WorryRaptor

Sounds really scary for you! Glad it all turned out to be ok. It must have been a lovely feeling of relief to get the all clear in time for Christmas!

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It was scary, but that was back in the days before I understood health anxiety and how my thoughts made things so much worse than they needed to be. Valuable lesson though...

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So a doctor called me today, first thing in the morning. She was really lovely and actually explained what the cyst looked like and what the plan was forward. She also told me my CA125 came back at 15, which is a good score. She then went on to tell me that I have a questionable complex cyst on my right ovary. It is 2cm by 2cm, so not large. She told me not to panic and to stay positive, and that she was referring me for an urgent 2 week appointment with the gynaecologist to investigate the cyst for cancer. She said this didn't mean it's definitely malignant, just that it warrants looking into with more detail as soon as possible. She told me that some complex cysts are benign, so don't worry quite yet.

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The low CA125 is a good sign, but it's not 100% reliable either way which is why they need to investigate more - and obviously some cysts (benign or not) may need to be removed. Some of these buggers (dermoid) can be filled with hair, teeth, and ski. Did you know? Fascinating!

Only about 13 - 20% of complex cysts turn out to be cancerous which makes MOST complex cysts benign - so take comfort in that stat, even though your HA will try its best to place you within that 20%.

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Still scared, but more calm now that I actually have some information.

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This tends to happen when we know more of what we are dealing with as opposed to our imaginations running riot.

Hope all goes well for you lovely X

Haha, yes I did read some interesting things can be tucked away in those cysts. I hope mine doesn't have teeth or it might try to bite when they remove it!

I suppose it's a case of waiting until my next appointment and keeping myself distracted in the meantime. I'm holding onto the fact that I have age on my side, a low marker, and the cyst is small. If anything nasty were in there, it's likely we have caught it early. If nothing is nasty in there, well, now I know what's going on in my ovaries.

Thank you for reaching out x

Thank you so much for taking the time to send reassurance :)

You are so right, it's definitely much easier to face a problem when you know what it is! I feel that some doctors simplify things so much that it ends up being too vague, and as a result, more worrying because your imagination fills in the blanks. This doctor told me everything I needed to know.