View Full Version : Ovarian ultrasound yesterday. Referred urgently for a CA125 blood test- scared
WorryRaptor
03-12-20, 12:59
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.
WorryRaptor
03-12-20, 17:24
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.
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 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.
WorryRaptor
04-12-20, 10:14
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.
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!
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...
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.
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%.
Still scared, but more calm now that I actually have some information.
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
WorryRaptor
04-12-20, 12:52
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
WorryRaptor
04-12-20, 12:55
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.
I'm so glad that you had such a swift and caring response from the doctor. Informed knowledge about your own treatment plan is so important and cuts out all the crap available from the offices of Dr Google.
My friend had a large dermoid cyst-hair, teeth and all-along with normal CA125 result. Let's hope you get your gynae appointment through really quickly-it sounds as if you have an excellent doctor who is doing her very best to get you seen asap xx
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!
:roflmao:
WorryRaptor
04-12-20, 18:08
I'm so glad that you had such a swift and caring response from the doctor. Informed knowledge about your own treatment plan is so important and cuts out all the crap available from the offices of Dr Google.
My friend had a large dermoid cyst-hair, teeth and all-along with normal CA125 result. Let's hope you get your gynae appointment through really quickly-it sounds as if you have an excellent doctor who is doing her very best to get you seen asap xx
I'm hoping it's just a dermoid cyst or something harmless. It's sitting in the back of my mind that they haven't told me what kind of cyst it is yet, so I'm hoping the next appointment makes that more clear. How did they identify what kind of cyst your friend had? I had an ultrasound which I assumed was a gold standard way to pinpointing what kind I'm dealing with, but maybe not.
I'm not actually sure as it was a while back but it was a large cyst so maybe easier to classify by ultrasound? Scass has recently been down the ovarian cyst pathway so i'm sure she could advise you on what she had done re investigations. I know she had an MRI for final confirmation after ultrasound and gynae consultation and everything was benign. This won't reassure you of course but she may be able to explain what is involved in the treatment plan at least from her point of view.
WorryRaptor
05-12-20, 15:33
I'm not actually sure as it was a while back but it was a large cyst so maybe easier to classify by ultrasound? Scass has recently been down the ovarian cyst pathway so i'm sure she could advise you on what she had done re investigations. I know she had an MRI for final confirmation after ultrasound and gynae consultation and everything was benign. This won't reassure you of course but she may be able to explain what is involved in the treatment plan at least from her point of view.
I read the thread by Scass last night, and it was so good to see she got the all clear at the end! That whole journey must have been so nerve wracking for her.
I'm staying focused on the facts that a: The doctors are being really thorough and not dismissing me, b: There's a chance that this cyst just needs a bit more imaging for a clearer picture and c: Even if it looks wonky, it could be benign!
That's a very sensible and helpful attitude to have. Concentrate on fact and not anxiety fiction. I'm glad Scass' experience has helped. Ovarian cysts are very common but you need a thorough assessment leading to a conclusive diagnosis which is what you will get as soon as possible x
WorryRaptor
06-12-20, 15:37
Having a little bit of anxious moment. I know this is probably my brain making all kinds of silly connections, but I'm starting to attribute a lot of my mystery illnesses to this whole thing. I've stayed off Google, but from my general knowledge of family members who had cancer and info you pick up along the way, I'm getting worried that this has been going on for a long time. I've spent the past 3 or so years will lots of strange symptoms like sudden weakness and fatigue, pelvic pain, tenderness over that ovary which I ignored for ages, leg aches, nausea, heartburn, dizziness, irregular bleeding, ibs, back ache. The list goes on. Vague things that were always treated as separate issues (without much success at all).
I realise much of this is probably anxiety, and the frustration of waiting to hear what the next step is. Just having a bad day :(
WorryRaptor
07-12-20, 13:12
A little update. Hospital called with an appointment for next week. They're really moving fast. So nervous.
nomorepanic
07-12-20, 13:17
To be fair they are moving fast as they now have free capacity to treat people.
I was referred for a transvaginal ultrasound scan and I got it within 2 weeks. I think it is just that they don't have that many people needing those sorts of treatments.
I have had cysts in the past and this time they found largish fibroids. One was obscuring my right ovary but they are not treating it or doing anything about it.
My ovarian cyst went on its own.
It is nothing sinister until they 100% tell you that it is.
WorryRaptor
07-12-20, 13:39
To be fair they are moving fast as they now have free capacity to treat people.
I was referred for a transvaginal ultrasound scan and I got it within 2 weeks. I think it is just that they don't have that many people needing those sorts of treatments.
I have had cysts in the past and this time they found largish fibroids. One was obscuring my right ovary but they are not treating it or doing anything about it.
My ovarian cyst went on its own.
It is nothing sinister until they 100% tell you that it is.
Glad to hear yours turned out to be benign.
Did they know what your cysts were from the ultrasound? I seem to be reading conflicting info on wether the ultrasound is effective at identifying cancerous cysts or not. My situation is that they've already done the ultrasound, then after that immediately put me on the two week cancer referral and ran the CA125 blood test on me. Everything became urgent after that tv ultrasound. I'm hoping that this means maybe they just need more imaging done to be sure its benign, but I can't help thinking it's serious. They confirmed it was a "complex" cyst, meaning it could possibly be cancerous.
nomorepanic
07-12-20, 13:59
I really can't remember what they said to be honest. It was a long time ago.
It all sounds routine and normal to me and not necessarily urgent. The two-week referral is normal as well.
Please try not to " read " any online info which won't have any bearing on your case?
WorryRaptor
07-12-20, 14:35
Please try not to " read " any online info which won't have any bearing on your case?
Avoiding anything on Google, but joined the cancerresearchuk chat support forum where people are waiting on urgent two weeks referrals for suspect cysts. I've avoided going near any threads where cancer is confirmed, and have stuck only to things relevant to me. Many of them are in the same stage as I am in the process and have no idea if it's serious or not. There are nurses there who help with info on what to expect. Unfortunately quite a few of them seem to say an ultrasound is very good at telling if something is likely to be cancerous or not, but that you have to wait to see what the specialists think. They also said that 9/10 people who are referred via the two week cancer referral are not diagnosed with cancer. So that's somewhat comforting. It definitely helps to have professionals giving me solid info, but the ultrasound comments threw me a little.
Edit: The support forum is for people waiting too. I didn't want to seem like I was joining a forum just for people with cancer as that would be extremely selfish!
An ultrasound will just pinpoint the characteristics of the lesion. Nothing is 100% definite. It's an inconclusive result but will indicate whether further investigations are necessary.
I had an experience recently when ultrasound/biopsy indicated malignancy and the Royal Marsden Hospital were asked for a second opinion but couldn't give one without having the lesion removed. It was benign.
It isn't cancer until your specialist tells you it is..as FMP so wisely says.
WorryRaptor
07-12-20, 19:28
An ultrasound will just pinpoint the characteristics of the lesion. Nothing is 100% definite. It's an inconclusive result but will indicate whether further investigations are necessary.
I had an experience recently when ultrasound/biopsy indicated malignancy and the Royal Marsden Hospital were asked for a second opinion but couldn't give one without having the lesion removed. It was benign.
It isn't cancer until your specialist tells you it is..as FMP so wisely says.
Very true. At least I'm getting seen to very quickly, so if there's anything amiss, hopefully it's easily treatable. I'm setting my hopes on them turning around and saying "Oh it's just a slightly weird looking benign growth and you can go along your merry way" :D
Very true. At least I'm getting seen to very quickly, so if there's anything amiss, hopefully it's easily treatable. I'm setting my hopes on them turning around and saying "Oh it's just a slightly weird looking benign growth and you can go along your merry way" :D
There's every chance of that but I expect it will be hard to keep your HA mindset "tamed". Not long until your appointment though which is good. Knowledge of your OWN condition is power x
WorryRaptor
15-12-20, 15:27
A quick update.
So I'm extremely confused. With that confusion comes doubt (thanks anxiety).
I went to the urgent gynae oncologist appointment yesterday, on the verge of tears because of this complex cyst I was told I had. All of those urgent calls and quick appointments have been terrifying.
So two doctors sat me down and told me they weren't remotely worried at all. That not only were they completely unconcerned, the ultrasound images they had received were apparently bad quality. The main gynae said she didn't even think there was a cyst at all and she had no idea what they thought they'd seen. She said, just to confirm this, that she would do an ultrasound there and then herself. She almost seemed annoyed by the whole thing. Meanwhile, I'm crying like an idiot because I was very directly told that I had a complex cyst which had prompted all of these urgent tests and appointments. I had come to terms with the possibility of having cancer, while not telling any of my family or friends.
So, she did the second ultrasound and said that it was all fine. I have slightly polycystic ovaries (which I knew about anyway). She said her u/s machine could take much better images than the one from my previous ultrasound. I asked about the cyst and she said there's none, you were probably ovulating at the time and the follicle collapsed in on itself.
The appointment was over in about 15 minutes, and that was that. She said she was sending a report to my doctor but I didn't have anything cancerous.
I can't feel relieved, I honestly can't believe it. I feel like any second they will call to tell me they did in fact see something. I keep worrying that maybe she only looked at one ovary and the report had the wrong side listed. I know all of that is irrational though.
I want to be overjoyed but I'm stuck in the same tense headspace I've been in for the past two weeks. Yesterday was a blur but I'm clinging to the fact she said "You definitely DO NOT have cancer in there". I almost feel scared to say it out loud in case I get another urgent phone call. My brain feels fried by this whole experience.
Also, I just don't get how this kind of thing could happen. It's such a freak incident that the u/s sonographer took bad images, the person who reviewed it decided it was possibly cancer, called me in for urgent tumour marker tests, then my own gp referring me urgently too, only for the gynae to tell me I was probably just ovulating in a funny way. Surely this doesn't happen often? I can't imagine women who are just ovulating get fast tracked to cancer investigations. That would be a massive drain on NHS resources.
Anyway, I'm still in shock, but I guess I wanted to update this in case anybody is going through a similar worry. Sometimes it actually turns out to be absolutely nothing at all, even when it looked bad in the first place.
I know you are in a state of shock but it IS good news...really good news but it's been a terrifying experience for you especially as you have HA.
I'm sure you would be entitled to make an official complaint but that would just involve more doubt and anxiety, I suppose?
I was diagnosed with a condition in my twenties which was later put down to a dodgy x ray machine...It wasn't cancer-related though so nothing as frightening as your experience.
You HAVE to focus on the "no cancer" FACT despite all the HA voices urging you to be suspicious and doubting of the doctors' judgement based on yesterday's appointment. I hope you will soon receive a hospital letter which spells out the situation and gives you visual confirmation of your clear bill of health x
WorryRaptor
16-12-20, 15:03
I know you are in a state of shock but it IS good news...really good news but it's been a terrifying experience for you especially as you have HA.
I'm sure you would be entitled to make an official complaint but that would just involve more doubt and anxiety, I suppose?
I was diagnosed with a condition in my twenties which was later put down to a dodgy x ray machine...It wasn't cancer-related though so nothing as frightening as your experience.
You HAVE to focus on the "no cancer" FACT despite all the HA voices urging you to be suspicious and doubting of the doctors' judgement based on yesterday's appointment. I hope you will soon receive a hospital letter which spells out the situation and gives you visual confirmation of your clear bill of health x
Thank you :) Yeah, I'm slowly relaxing now as a couple of days have passed and there's been no urgent calls. Hopefully I'll be able to let this be a distant memory soon. I'm focusing on really taking care of my overall health and let go of the hypervigilance. The stress I cause myself is more likely to cause more harm than any number of the conditions I may or may not have.
The really weird thing is, when it seemed like there was genuinely something the doctors were concerned about, my anxiety took a back seat, and I became (for the most part) very calm and reasonable. Inside I was terrified of course, but I had accepted that bad news was a possibility and that I would deal with whatever came.
While the whole ordeal was indeed really taxing on my mental health, I can't help but be grateful that an over cautious sonographer thought they saw something. It means they didn't dismiss something, even if it looked vague. That could mean somebody else's life being saved if something slightly questionable showed up for them and turned out to be something serious. Still, I would have preferred not to experience any of this!
A very reasoned response there to a difficult situation and a great outcome. Its interesting that you say that 'anxiety took the back seat' after acceptance that it might be something wrong - when I was diagnosed with 'something wrong' I was anxious, yes of course, but the acceptance meant that I had to just get on and deal with it, there was no choice.
WorryRaptor
16-12-20, 15:39
A very reasoned response there to a difficult situation and a great outcome. Its interesting that you say that 'anxiety took the back seat' after acceptance that it might be something wrong - when I was diagnosed with 'something wrong' I was anxious, yes of course, but the acceptance meant that I had to just get on and deal with it, there was no choice.
It's strange isn't it. It's like the anxious mind can't handle choice itself. For example, I sometimes clam up when something good happens as a result of a choice I made, because I'm always waiting for a terrible thing to take the good thing away from me. It's a bit like my mind is on damage control before anything even happens.
I do hope your 'something wrong' was something you were able to recover from/treat?
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