I need some reassurance please. I'm trying not to panic!

[pigsinmud]

I had blood tests the other week. I hadn't been to GP since 2007 and went with breathlessness, fatigue, aching joints, feeling generally not right. So he did blood tests for loads of things. Saw him earlier this week - anaemic (not surprised at that) as haemoglobin was 10.5 (was 11.5 in 2007) and then he said my AC 125 was elevated. He said he'd refer me for an urgent tv scan. He did say that my levels could be higher anyway - nothing to compare it to. On the chest x ray form he wrote - AC125 115, so I assume 115 is my level.

I have no other symptoms of ovarian cancer. No family history. I'm 42, periods normal. I've had the chest x-ray, just waiting for results and scan appointment.

I googled and discovered the AC125 test is unreliable and other things can cause it to be raised, but I can't stop a bit of panic rising up now and then. My panic is mainly due to I keep wondering if it's spread to my lungs and that's why I'm breathless - I know that's a huge leap, but once the house is empty, and the dc gone to school, I start to panic! I had my period when the nurse did the blood test and I read that menstruation could cause the levels to be higher. Please stop me panicking.

Anyone? I'm trying not to worry. Just got 2 appointments through - feel like a fraud as I don't have any gynae/abdominal symptoms!

Raised CA125 levels can be a sign of many things, only a few of which are scary. For example, your CA125 might be raised if you had TB.

I'm a worrier too so I know what it's like, but PLEASE remember that you're in good hands, and that worrying is completely pointless. Just wait and see. I'm sure everything will be absolutely fine. If it's not, you will cope. But you can only deal with things WHEN THEY ACTUALLY HAPPEN, not before!

Massive hugs.

Do you mean 115, or could the Dr have written 11.5?

Thanks. He wrote 115. He said it should be under 35, but never actually told me what mine was. I was still in shock from him saying a marker for ovarian cancer or a blood tumour cancer.

This is when "a little information is dangerous". I really don't think he should have dropped the C-bomb at this early stage. He should know how terrifying that word is!

CA125 means Cancer Antigen. So raised levels can be a marker for several different cancers BUT BUT VERY IMPORTANT it can also be raised by many different, benign causes. And yes, a period is one of those reasons.

I think it's great that you have a thorough GP.

There could be lots of reasons for your symptoms - all sort-outable.

Try not to let your mind run away with you - KEEP BUSY!

Yes, thank you. You are both sensible. I'm normally rational, but was totally thrown! I'm going outside to talk to my chickens.

So a period can raise your normal level by a bit, you were on your period and your normal level was raised by a bit. Sounds ok to me

Anaemia causes breathlessness. Could you get the blood test done again when you are not on your period?

I don't know anything about AC tests but I do know that anemia and low ferritin cause all your listed symptoms, having suffered myself.

As a serial health anxiety worrier, I understand how you feel, making your own conclusions from some facts. In my case, anemia causes breathlessness, dizziness and fatigue but, hang on, aren't they also symptoms of heart failure which severe anemia can lead to. Am i, therefore, about to cark it from a heart attack? It just goes round and round, doesn't it? A little knowledge is a dangerous thing. How true, but how difficult to ignore!

Yes I swing to convincing myself it's just anaemia and then imagining a pain in my abdomen. I can't wait for the scan next week. Does a sonographer tell you the results there and then? It's at my local community hospital, so is a small site. The week after I've been given an appointment at the nearest huge hospital, so I'm hoping if the scan is clear that I don't need to go to second appointment.

They don't give you any results on scan day normally. The one who does the scan isn't usually the person who reads it but also they're concentrating on getting the right views.
I've had a gazillion and only when having a and e type investigation have I ever had feed back and then it's the Dr / surgeon not the Radiographer

Ah thanks QOD. I'm sort of wondering why I have 2 appointments as the big hospital one talks about having a scan, so can't see the point of having 2 scans. I was hoping to be given the all clear at the community hospital otherwise I'll spend most of the school holidays trying not to worry. I hate hospitals - make me really nervous, hot and sweaty!

Schilke - knowledge is power so ring the community hospital and ask them what scan they will be doing and when you will get the results. Then ring larger hospital and ask same question.

If you can't get info from them ask for a telephone appointment with GP and get info from him/her.

It's just not on for medics to (albeit unwittingly) to scare the bejesus out of us and not let us know what they're planning on doing to our bodies.

It's a standard procedure for them but a big deal for us.

And let your GP know how anxious you are; might be able to get some diazepam to see you through next couple of weeks including the investigations.

Good luck.

I'm seeing GP on Tuesday for chest x Ray results and I'll tell him how I see to have lost my normal laid back rational self! I will also ask about the appointments. He had told me I'd have a transvaginal scan at local hospital and that's what one letter said.

I just wasn't expecting the second letter/appointment which seems to be a fast track clinic for women with a suspected gynaecological cancer....I have none of the symptoms listed on that letter!! That appointment could be a 3 hour session of scans/examinations/blood tests.

Thank you all - I will chat with my GP on Tuesday. I do feel a bit calmer now.

My sonographer told me what she saw there and then. I don't know if it was because I'd said I was scared, because I was just lucky or what. They are highly trained people and after looking carefully she told me what she saw and didn't see.

My friend had high levels of AC125 and was scanned only last month. She had fibroids (and not even ones big enough to do anything about). They told her at the scan but I think it really depends who you have scanning you and how experienced they are.

Thank you. You are wonderful people at reassuring me.

Actually i think the fast trackcclinic does give answer on the day fir some stuff. Colleagues wife had mammo etc and was cleared within appointment

My mum has had ovarian cancers a number of times. Each time CA125 was well above 30,000 and initially above 1,000,000. So I think I this slightly elevated level is more likely something more innocent.

Agree with the above, if Ca-125 is >30,000 , then its usually cancer.

Hope your mum is doing ok now. I have calmed down a lot. Thank you. I was just totally thrown when my GP used the word cancer. I wonder if because I haven't been in 8 years he thought I must be feeling really really ill as I'd actually gone to see him!

115 is unlikely to be ovarian cancer. Several things can raise it including endometriosis. People can have ovarian cancer with a normal CA125. If you have OC it is usually way above say 400. You can have endometriosis with no symptoms so there is a good chance it is something like that.

I would also ask the GP to have your heart checked as raised CA125 plus the other symptoms you mention could point to heart issues.

Sorry not trying to scare you!