Stepping in to your my World

June 2013 - Stunned!

I am new to the site today and having looked around feel comforted by the level of friendship, knowledge and support available. I am new to this and know virtually nothing!

Results of recent tests I had done show CA125 at 115 and Complex Ovarian Mass showing a vascular enhancement of Cyst. I don't know what any of this means really but I have been googling (which is how I found you) and know it isn't very good news. I didn't know what CA125 was for and thought I was just going to have an ovarian cyst assessed. Consultant has said that I will probably need to have bilateral salpingo-oophorectomy plus omentectomy plus remove cervix and then multiple biopsies. My case will now be looked at by the Multiple Disciplinary Team but he told me to expect surgery in 2 to 4 weeks.

I know that the Cyst could be benign and it could all turn out OK but right at this moment in time I dare not let myself be too hopeful.

I am totally distracted and can't think straight. It feels like I have got a big stone in my head and there is no room for any other thoughts.

34 Replies

  • Ok, I just want to say that you might be getting ahead of yourself. My understanding of what you are reporting is that the surgery is likely to be precautionary, and that you have not had an ovarian cancer diagnosis.

    Let's hope that is the case - ov. ca. is only one possibility, and not the most likely - so try not to scare yourself. Did he not want a scan? - my oncologist says he needs bloods, examination and a CT scan to diagnose ov. ca.

    Try not to terrify yourself - it is a horrible way to spend 2 to 4 weeks when it might be unecessary!

    Very best wishes,


  • Thanks Isadora

    We have the CT Scan, the ultrasound and the bloods but I agree I am ahead of myself, only after the surgery and biopsies will we know for sure.

    It's hard to think about anything else though


  • I think we all know that feeling, Elaine. The start of all these kinds of journeys are so confusing regardless of how they turn out... But I am so glad you found us. Many of us are a little mad, of course, but usually someone knows something useful no matter what the question, and everyone is always there with a sympathetic ear and virtual hug. I hope it turns out you don't need that!


    Sue xxx

  • Thanks Sue

    I am already mad, so don't know what I'll be in a few weeks time!!!

    Thanks for your kind words :-)

  • Hi Elaine,

    Welcome to the club no one wants to join, just sending you my best wishes love x G x

  • Hi Elaine,

    Just to help you - research studies say that 1 in 3 ladies in your exact situation end up having an ovarian cancer diagnosis at pathology.

    Its a really horrible time, and we know how stressful it is. You are in our thoughts.

    L x

  • Thank you Louise

    That is interesting data, I like facts and figures at the moment, I know that they are not conclusive but it gives you something logical to grasp hold of.

  • Good -- keep that sense of perspective! Some figures you will come across otherwise can really freak one out - old, partial, or out of context are just few of the issues. You are not a number...


    Sue xxx

  • Just to let you know that this data is based on the first year analysis of the General population screening study - UKCTOCCs. Women who had two rising CA125s (6 weeks apart) then had an ultrasound. If that showed 'cysts' with a cancer like appearance then they had surgery. Of those who had surgery 1 in 3 had a malignant pathology.

    Fingers crossed you will be in the majority too!

  • Elaine,

    Under such circumstances it hard not to get ahead of yourself and some of us even cope by preparing ourselves for the worst. All I can say is any sort of inflammation in the pelvis or abdomen can elevate your CA125.

    Here in my Manchester they would not formally diagnose me until they had a viable biopsy. At first they tried some less invasive procedures which were inconclusive so had to wait for the full diagnosis until after I had a full debulking surgery but my CA125 was about 2400.

  • Hi Elaine

    Welcome! I echo the advice of the others, but equally I understand how difficult it is not to think the worst, not to worry, not to keep coming back to the 'what ifs' Have a look on the Ovacome site, there is loads of info on there. It's Well worth a visit. If you have some wobbly moments, just post on here. Try not to look on the Internet too much. There are loads of inaccurate statistics! :-/

    Just want to wish you all the best. You will feel better when you know what the problem is and you can find a plan to get over it.

    Love Wendy xx

  • Thanks Wendy

    I will have a look at the website. I think it is the waiting and uncertainty that is so unsettling. Once you have this kind of news you really want to move things along straight away but can't and just have to wait for the letter to drop through the door with your appointment date.



  • Dear Elaine

    I'm really sad to hear your story but you have found us here and you'll have loads of support and advice from the community here which does help in those confusing first weeks and months. All those long words basically mean that you'll have a routine hysterectomy with a little extra because you'll have a specialist gynae-oncologist to do the op.

    These are horrible moments for you. Take heart. We're here for you. Keep blogging/posting and we'll do our best to help you through troubled times.

    with love xxx Annie

  • Thanks Annie, feeling better already :-)

  • Hi Elaine

    I know what you are going through as I was in a similar position at the start of the year. I was due to go into hospital on 9/1/13 to have what I thought to be a simple ovarian cyst removed. But just after Christmas I received a letter from the oncologist saying he needed to see me. So on New Year's Eve I went to see him, he told me that I needed a hysterectomy within the next 2-3 weeks. The reason was because my CA125 was 189. I then had to have a CT scan and another CA125 test.

    The results of my second CA125 had gone up to 294, so as you can imagine I feared the worse. I was constantly googling, which like you is how I found this wonderful site.

    I was told that I would have hysterectomy, both ovaries, cervix removed. I was also told that the omentum and lymph nodes may have to be removed as well. A rapid analysis would be performed on the largest tumour whilst I was still under the anaesthetic.

    To cut a long story short, when I was back on the ward my oncologist came to see me, he said that the rapid analysis came back benign, he took a biopsy of the omentum but didn't have to remove it. The largest tumour I had was the size of a grapefruit and on the other side it was the size of an orange. I also had a large fibroid and endometriosis.

    I had to wait two weeks for the rest of my results and thankfully everything came back benign.

    My head was all over the place at the beginning as one moment I thought I had the dreaded "c" word and the next I was thinking, how could I have it as I had no other symptoms ( apart from getting up around 6 times a night for a wee). I found the ladies on here are really lovely, they reassured me and told me not to worry too much. I still come on here from time to time to see how they are getting on.

    I am sending you my best wishes and hope you find my story encouraging

    Take care

    Karen x

  • Thanks Karen

    Best Wishes gratefully accepted :-)

    I hope I get a good result too.

  • Dear Elaine

    I am pleased that you found this site as you will be able to gain a lot of insight into the situation through the experiences of other ladies. The vast majority have been through the same wave of bewilderment and disbelief that you feel now. As you say, you have stumbled into a situation where you never expected to be.

    Your CA125 is not high in terms of signalling the extent of what is going on. It is very difficult not to Google information. Please remember that not all you read on the internet is up to date or even correct. Some of the research papers are 5-10 years old and those are based on information collected nationally during a previous 5-10 year period.

    IF you are facing ovarian cancer, and I do say IF, much can be done. Even in very recent years, treatments have improved and outcomes are more positive. As you are new to all this, you may not be aware that there has been a tremendous drive over the past 4 years to improve the situation and raise awareness of the signs and symptoms of ovarian cancer.

    On this site, you will find all the information you need to prepare yourself for this operation.

    Support is at hand. Please do not hesitate to ask anything.

    Best wishes


  • Thank you Isabelle

    The site has been really helpful already, I think the more I know then I can prepare for any eventuality.

  • Hi Elaine

    Welcome to the club nobody wants to join.

    As the other ladies have said the fact that your CA125 is not in the thousands is good news , but the doctors won,t know untillyou have had the mass removed and it has been analysed. Try to keep busy between now and then , get some exercise if you can and some treats will make you feel better. You have obviously had a very rough time , so it is perfectly normal to feel scared.

    I love the photo photo of the clown triggerfish .....are you a fellow scuba diver ?

    Take care

    Charlie xxx

  • Hi Charlie

    Thanks for your good advice.

    My husband is the Scuba Diver, I did half of my Padi course but got too nervous when it came to going deeper so I have stuck to snorkelling but find that if you go to great reefs like Red Sea or Maldives the snorkelling is fantastic. We always try to holiday near some great reefs as the whole family finds it amazing.

  • What an amazing hobby to have. Must take your family to some wonderful locations. I loved the screen name triggerfish but didn't think to google it to find out what it meant. Hope you're somewhere wonderful this weekend. xxxx love Annie

  • Yes it is , my hubby and I got out diving qualifications in 2008 at the tender ages of 46 and 49 , a year before I got sick. It has really kept me going over the last few years , although my travails have been minuscule compared with the other ladies on here. But snorkelling is also fantastic and easier xxx

  • Dear Elaine ,

    So very glad that you have found us for support advice and most important friendship .... We cover all of that and more with the fun and laughter too on here ...

    Its pretty daunting when faced with all the info you have been given and the fact that you have already been through so much .

    I know its a worrying time but try and keep busy till you get your date which hopefully will not be to far off and please do keep us posted as to how you get on .Take care now ..

    Love Jan xxx

  • Thanks Jan

  • I was in your shoes a few weeks ago. I had surgery two weeks ago, this site was very helpful and advised me to concentrate on the operation and look at some of the sites concentrating on the hysterectomy which I did. I tried to take my mind off the diagnosis and that helped. It may be any number of things.You will need to be positive to cope with the operation, plan and get any jobs out of the way, organize as much as you can and get plenty of rest afterwards.

    Good luck


  • Thanks Sue

    I think I will settle down once I have my date through, then I will know what I have to do and by when.



  • Dear Elaine,

    I'm in a very similar situation to you and having my surgery on 22nd June. I found it helpful to talk to the clinical nurse specialist a little (not too much!) about what would happen if it is bad news. It made me realise that I will be able to cope with the chemotherapy if I need it. I agree with other posters that keeping busy helps. Also my GP gave me a short course of sleeping pills and things seem much less bleak now I can rest. It is very unsettling waiting for the date to come through but it won't be long now.

    Take care, Julie

  • Hi Julie

    What you said here reminded me, as I had a very similar issue in that awful waiting period -- I was very conscious that sleeping pills weren't a brilliant thing to take, but I had awful stress insomnia. Finally found the answer in hypnotherapy sleep apps in the App Store -- tried loads but found the ones by Andrew Johnson by far the best (couldn't stand the American ones...) - both his sleep and relaxation ones. I was able to take the pills less frequently and replace them several nights a week with the apps.

    Just in case that is any help -- I would say they are worth a try, at least...


    Sue xxx

  • Thanks Julie

    I've got the sleeping pills ready now! Once I get off to sleep I seem OK so I haven't needed it yet. My husband had one though as he is in a state about this as well. What a pair. How are you feeling now your date is getting nearer?


  • I'm doing ok, nervous about the surgery but there is lots to do between now and then and I find that helps. My CNS suggested planning little treats and projects to do while I'm recovering from surgery which also helps. It's easier now things are happening. The worst time was the 2 weeks between them seeing "something" on ultrasound and the appointment at the gynae/onc clinic. Hope your date comes through soon.

    Julie x

  • Hi Julie

    Just wanted to wish you all the very best for Saturday, I hope your freezer is full! And you have some nice books and films for next week.

    Love Elaine X x X

    P.s. I have my pre-op tomorrow and my surgery booked for 13th July.

    Coping better now things are happening.

  • Thanks Elaine, I just keep telling myself this time next week it will be all over. I'm glad your date has come through. We will both have our answer soon.

    Julie x

  • Just wanted to say I'm thinking of you. It's hard not to worry and waiting for surgery, results etc is so hard. I'm pleased you've found this site because there's so much good advice and support given on here. I've found it brilliant.

    Big hug

    Zannah x

  • I was in your exact position with a raised CA125 - higher than yours - and a complex ovarian mass. My consultant told me it was highly likely to be OC and I should have a radical hysterectomy. I'm 52. I just couldn't face the hysterectomy without knowing for sure, and even though they did ultrasound, CT scan and a laparoscopy (keyhole surgery to have a closer look at the 'mass') they couldn't tell me for sure. So after a lot of soul searching I told the consultant I wanted him only to take out the ovary and do the biopsies. He clearly thought I was being very foolish and told me bluntly I'd be back in 6 weeks having a hysterectomy.

    I had the surgery on 3rd June. The 6 cm cyst on my ovary had gone. The fallopian tube was wrapped around the ovary, and a section of bowel wrapped around that. There was also endometriosis which consultant says can cause raised CA125. He has taken a biopsy of my omentum and I'll get results in 10 days but he says he is now a lot more relaxed about my situation as it looks like it is NOT CANCER. My consultant can't explain how the cyst just disappeared (he has photos of it taken in February which he showed me!), nor how I wasn't in any pain, not even a twinge. My point here is, they know a lot but they don't know everything, everyone is different and womens bodies are complex.

    So take heart, things are not necessarily as bleak as they seem and it is perhaps more likely than not that you DO NOT HAVE OC. You've said you don't have any symptoms so that is very encouraging. I know exactly what you are going through as I have been there for the last 6 months. I focused on getting myself really fit for surgery - walking and swimming - and it has made such a difference to my recovery. I was up and about, standing up straight and very mobile, the day after. It also helped keep me calm. I am feeling fantastic now, like I could climb a mountain, even though I'm not supposed to lift anything heavier than a cup of coffee for 6 weeks!

    Hope this has been helpful and sending you a virtual hug and all my very best wishes for a complete recovery.


    Anne x

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