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CA125 Test Repeat

16 May 2019 02:29

Hi, my first time posting, I went to the GP about 8 weeks ago with IBS symptoms & because I'm 59 she decided to do a CA125 test. She phoned the following week to say it was 36 & I would therefore have to be referred for further tests, thankfully we have private healthcare & I got an appointment for 19th April & was given a vaginal ultrasound which was clear, however the consultant then decided to run another CA 125 test. That was 3 and a half weeks ago & I waited with increasing anxiety for her phone call which didn't come. As the time passed I tried to be positive & convince myself all was well only to get a call to say there was a problem at the lab and I would have to have the test again. I am absolutely panic strcken and feel like I'm caught in an ongoing nightmare I have severe health anxiety and am terrified that the level will have increased & I'll have to face further tests. For some reason the consultant has asked for 2 blood tests but the nurse couldn't tell me what the 2nd one was for. I can't sleep and am suffering panic attacks and crying a lot, I just wish I'd refused the original blood test, I've been through 2 other serious health scares in the past 2 and a half years and I can't take any more. GP is no help, it's almost impossible to get speaking to them & weeks for an aoointment, can anyone offer advice on how to live with this ongoing fear please? I have to wait again for the consultant to ring me, but no idea how long she'll keep me waiting this time.

CA125 Test Repeat

16 May 2019 06:27 in response to anxietycorner

Hi anxietycorner, 

It sounds like you've been going through a rough time. I wish there was something I could say that could help ease the anxiety. I am not very knowledgeable in this particular matter. I think the waiting is the worst part. When my dad was first diagnosed with prostate cancer, we had to wait two wees to find out what stage. When we found out that it was advanced we are heartbroken, and I remember the first two weeks waiting was the worst part because your mind can play all kinds of tricks and think of all sorts of scenarios. 

Is there any friends and family you can talk to about this? Maybe do activities to try to take your mind off of this at the moment? I know that is easier said than done, but I know sometimes trying to keep my mind occupied did help. I would play my guitar to get out of my head, or even just going for walks with people I cared about seemed to help as well. 

I truly hope that everything will work out for you, and please keep us updated on what happens. Sending positive thoughts and energy your way. 

CA125 Test Repeat

16 May 2019 10:07 in response to GiftThePresent

Thanks for your reply, you're right the waiting time is awful, it's like a rollercoaster, sometime I feel it will be OK & other times the panic just hits, night time is the worst. I'm trying to keep busy and dstract myself, but it's always there in the background, I don't think doctors appreciate the stress it creates. I'm really annoyed that the consultant took so long to tell me the test hadn't worked & only did so when I followed it up, that's really not acceptable. Even if she had spoken to me herself it would have helped as I could have asked questions about what the 2nd test is for. I just hope she doesn't make me wait another 3 weeks. 

CA125 Test Repeat

17 May 2019 07:34 in response to anxietycorner

Yes, I remeber those feelings all too well. I remember there were many days I would wake up and I would think I was dreaming or something because I couldn't believe that this was our life now. 

I can't really help you on the tests information, but there is an "Ask the nurses" section on this site, and they may be able to be of some help to you. They are very good at answering questions that you may have.

Try not to think the worst, I knwo it's difficult, but try to focus on the now. I found that focusing on the moment right now helped because then I wasn't worrying about the future and all the worst case scenarios. But, that is often much easier said than done. 

Please do keep us updated on what happens, and I hope there are others on here that may be able to offer some advice too. It would be very frustrating to be going through something like this and feeling like you're being left in the dark, not being given the answers you're looking for. Hopefully you will get some answers soon, and you will be able to breathe a sigh of relief. 

I hope this has helped you a little. Take care. 

CA125 Test Repeat

17 May 2019 20:44 in response to GiftThePresent

Hi, some good news today, I decided to phone the consultant's secretary & see if the results were in, they were, but she wasn't allowed to tell me them. She did however very kindly ask the nurse to phone me & she said that although she can't give a full report she could tell me the numbers and they were all within normal levels, which is a huge relief. The CA125 was down to 31, the other test was the HE4 test which was around 50, normal level is anything up to 150 and the postmenopausal ROMA test was also within normal levels. She said she would get the consultant to ring me later, but she didn't call back so I'm thankful that I had decided to phone as it  has saved me from a very worrying weekend. Thanks for your support during this worrying time, it was much appreciated.

CA125 Test Repeat

17 May 2019 22:33 in response to anxietycorner

Oh, that so fantastic to hear that news! I'm so glad that your levels are within the normal range! I know sometimes when we worry about things we can think the worst. I am so glad that you were able to get a hold of them, and that everything is okay. 

Now go relax this weekend and take it easy! I bet you feel like you can let out a huge sigh fo relief! Take care Happy

CA125 Test Repeat

17 May 2019 23:04 in response to GiftThePresent

You're right, when you have anxiety the mind runs riot at times! Certainly is a great relief. Have a good weekend.