CA-125 test

Hi everyone,

I'm new to this site but I am eating myself up with worry about some tests I am currently going through.

I visited my doctors 2 months ago, with complaints of pain during and after sexual intercourse, abdominal pain, sharp pains in my ovaries, and pains down my legs, hips and my lower back. I was sent for smear tests to rule out any STD's, and all of these came back clear. I was therefore sent for more bloods to examine the levels of hormones in my blood, these came back abnormal which meant an ultrasound scan and transvaginal scan were recommended. At this scan, I was found to have a 6cm cyst on my left ovary, and my right ovary is almost double the size of what it should be, and this also had lots of smaller cysts on it, which had more solid matter in them. my results were fast tracked back to the doctor who has diagnosed me with Polycystic Ovarian Syndrome, however also wants to do a CA125 blood test, as there was a solid tumour on one of my ovaries. I had the bloods today and I am hoping to get my results over the weekend.

I have researched so much about ovarian cancer, and I can't take this waiting for much longer ! Has anyone else had a similar experience?

Thank you to everyone who has taken the time to read this x

11 Replies

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  • Hi, try and not worry at this stage. I saw a tv program recently about a woman who went in for some sort of weight loss surgery and they found a tumour on her ovary the size of a rugby ball. The surgeon zipped her back up and said it could be OC. It turned out to be a benign cyst.

    A CA125 blood test if elevated above 30-35 can but not necessarily indicate OC but its too early to say. If your result shows an elevation I would expect surgery to remove the enlarged ovaries and a biopsy would be the only way to know if its cancer or not. The results may take a couple of weeks though.

    Rest assured if it is deemed to be OC then providing it is confined to the ovaries then a good outcome can be expected. It would be worth getting a full CT scan organised to see if it is contained. I,m sure they will arrange this or wait until surgery and have a peek inside. Hope this helps. Love Paul xx

  • I have just replied to your inbox :)

    .xxx

  • Hi Rebecki

    Welcome to our site. I know you'd rather not be here but there will be loads of friends on here who will be able to sympathise, reassure and share your relief/worries/fears etc. I know how hard it is to wait for results, all you can do is try to arrange to do something that takes your mind off your fears, and its not easy. Your symptoms do not necessarily indicate OC, but they could. My story is on my profile, and I had some similar symptoms. I was operated on quickly, thank goodness, and although it was OC, it wasn't anywhere as bad as I feared. I am still here after 10 years, and healthier than ever! I know where you're coming from with the waiting though, its really tough.

    Try and plan a little diversionary treat for yourself every day. It'll take to focus off your worries about the outcome. When you know what the near future will bring, let us know, there will be lots of advice.

    All the best

    Love Wendy xx

  • Thank you for taking the time to reply. I go on holiday next Thursday so I need to find my results out before then, just in case to there is anything wrong that may need to be sorted urgently, I am only 20 years old, an therefore I know ovarian cancer is unlikely, but I have read about different tumours.. That occur more commonly in younger women, I read up on the germ cell tumor, which occurs in young women in their 20's, would a CA125 blood test pick up abnormalities if I had this type of tumour?

    It's fab to hear that you were treated in time, Wendy. What tests did you undergo to get a confirmed diagnosis of ovarian cancer, if you don't mind me asking?

    Xxxxx

  • Not familiar with the specific path but I suspect we all know that feeling of fear and the awful waiting game ... So sorry you have this, it must be so worrying at your age. I'm not ancient but the perspective does change a bit... You are going to have to stay calm. Chances of it being OC are lower, the younger you are. But if it does turn out to be that, your chances are better too.

    CA125 is part of a multi-modal diagnostic process that usually involves a transvaginal ultrasound (sounds worse than it is) and sometimes a CT scan too. The blood test isn't reliable for everyone, unfortunately. Sometimes OC isn't confirmed til the histology is done on bits removed during a precautionary op, if tumours are suspected.

    I was stage 3C but all was removed and, touch wood, I appear to have got through OK...

    Love Sue xxx

  • I am hoping in this case my age will be on my side! I have already had a transvaginal ultrasound... This is where they realised I have a tumour with solid parts in it. Therefore, if it is not cancer, then I am not sure what it is because they reassured me it is not a cyst. So I feel like I have been dropped in the unknown and I cannot find a way out. I have been told I will be going for surgery to remove the cyst, and therefore I'm just going to have to wait, and wait, and wait!

    I'm pleased to hear your cancer has been removed and you can hopefully carry on living a full life! Xxxx

  • Hi Rebecki

    Welcome and so sorry that this is happening to you.

    My general understanding is that usually if a cyst is 5 cm or more it is removed surgically , so you may very well be facing an operation. What this will entail depends on when they have seen on imaging and what they find when they open you up. The only true test forccancer is when the mass and any relevant parts are removed and analysed by a pathologist , sometimes by a second. Doctors won't always make this clear enough.

    Regardless of what is seen or not nobody will know for certain that your mass is or is nit a cyst. Also , as my consultant told me rather condescending, doctors use the terms mass , tumour and cyst interchangeably. ...we as patients just get confused.

    There are many many people on here who had operations convinced thy had cancer and did not. Even worse s people who are told that it is not and then get a nasty surprise afterwards ....I was one of them .

    Try to take things easy , of course it is perfectly understandable and normal to worry. Just try to stay busy.

    If you can bring a friend along to appointments , write don your questionsbeforehand and ask how you can get in touch if you have questions later.

    This is truly a terrifying place to be, but even if it is early stage cancer so much can be done. I had a borderline tumour which requires long term follow up , but have otherwise been fine.

    Take care

    Charlie xxx

  • Hi Rebecki

    Try and relax on your holiday! The hospital you went to seem to be very thorough and seem to have informed you all about what they have found so far. The CA 125 can indicate a problem but as some one else said isn't a totally reliable indicator.

    I am sure that you already realised there are a lot of lovely people on this site who will support you through this.

    Love and prayers

    Anne

  • Hi Becky, sorry to hear you are going through all of this right now - especially when you should be looking forward to going away on holiday! I spent a long time searching everything on the Internet convinced if I knew enough about what was going on (as everything happened so quickly and out of the blue) that it would make me feel better. It didn't...and I got even more confused and scared until I found this place!

    I ended up having surgery after goings to the doctors with stomach pain, and beforehand had a scan and got told they believed I had a dermoid cyst (benign) because of the solid parts that they could see. It wasn't until after they had operated and got the biopsy back that it turned out to be borderline. So really it could turn out to be anything and unfortunately no one can ever know for certain until you do have a biopsy. The hospital you went to does sound good and like they want to check everything, so it sounds like you are in good hands. Goodluck, try to enjoy your holiday if you dont find out in time and let us know what happens xxxx

  • Hi there... like others, I would just say that a raised CA125 level doesn't mean you have this disease. A raised level can be as a result of inflammation in the abdomen due to benign conditions like benign growths or fibroids. Most growths on the ovary are benign anyway and since you already have Polycystic Ovary Syndrome, maybe this is the reason for the growths. I do know that having POS isn't a pleasant experience sometimes. Take good care... Love Tina x x

  • I just want to thank each and every one of you that have taken the time to reply, I greatly appreciate it. I am hoping to find out my results either today or tomorrow, so I will let you know how they go. However after reading all of your comments, I have realised that the ca125 test maybe isn't the bee all and end all! I suppose I will have to wait for surgery for a definitive answer, and regardless of what the ca125 level is, to take it with a pinch of salt, as I have read up on so many cases where the ca125 is raised, and the patient had nothing wrong with them, and equally a low ca125, but a patient who had an advanced stage of cancer!

    Thank you all again, and I hope you are all doing well xxx

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