Trying to stay positive

Hi there, I am new to this site. Last week I found out that I have bilateral complex cysts on each ovary (one measuring 7cm and the other 4.5cm ) and a lollipop follicle structure in the fundus of my uterus. The discovery was only a coincidence as I had been having an irregular menstrual cycle for the last six months (no other symptoms) and the GP thought it may due be polycystic ovaries and therefore referred me for an ultrasound. I had the results for CA125 levels today which have come back at 25 however I do know this can be an unreliable test. My mother died of ovarian cancer when she was 42 however it was found at a very advanced stage. I have been urgently referred to the gynae team and it is just a waiting game from now on.

I am only 29, recently got married and we have been trying for a baby for last couple of months and it absolutely terrifies me that I may not been able to have children or worse to leave my husband behind. I just what to know for definite what the diagnosis is so I can begin dealing with it. What are the experiences of others? What should I expect from the gynae specialist?

24 Replies

  • Dear Nik

    I'm so glad you've found us as you'll have plenty of support here on this site. First thing is you are getting a fast-tracked referral to a gynaecologist. That is all good and very efficient of your GP and your medical team. It doesn't necessarily mean you have anything sinister going on but of course you'll worry there is.

    It sounds good that your CA125 is normal and even better than further checks are being done to make sure it's nothing to worry about. Hopefully you'll be referred very soon to the gynae team. My referral took less than a week and everything became much clearer once I'd seen a specialist.

    We have to try to take one step at a time. I know that's difficult and your head is whirring with all these worries - but your main focus right now is concentrating on keeping well and positive and enjoying your newly married life. One of my favourite reminders to myself is 'Don't spoil today worrying about tomorrow'. It's worked OK for me and I hope it does for you too.

    I am keeping my fingers crossed all this is just a routine problem that can be sorted out and you can realise your hope of having a family. Please let us know how you're getting on and keep posting if you feel we can be of any help.

    There's also a nurse-led phone line at Ovacome - 0845 371 0554. They are wonderful and have loads and loads of experience re ovarian cancer and specialist knowledge to support younger women. I do think it's worth your ringing them some time during office hours.

    Take heart. Loads of love, Annie xxx

  • Hi nicki,

    Please do try not to worry too much, as hard as this is. But it is a waste of energy worrying about something before a diagnosis, as it may not be cancer.

    My daughter was in your situation a few years ago, it was a long road of tests to reach her diagnosis. She does have the braca 1 gene mutation but her diagnosis was not cancer.

    Amy will be 29 in september. She was diagnosed with poli cystic ovaries 3 years ago. She had been trying for a family for about a year at the time of diagnosis. And now has a beautiful baby girl who will be 2 in october, thanks to a fertility drug called climad or something like that.

    To begin with your CA125 test is very low, anything below 35 is a normal result.

    When you have your gyny consultation, he/she may want to do an ultra sound scan, sometimes this is done over the lower tummy area, like in pregnancy but it will be more likelythat you will have a viginal scan, which is internal. This does not cause pain but maybe a little uncomfortable. This tells the doctor if there is anything going on inside you. But he may not be able to tell you at that appointment. He may refer you to have a CT scan, this gives a clearer picture on a much bigger scale. You may need to wait about a week for those results.

    When my daughter had her first internal scan, nothing abnormal was found-her problems continued, basically she didnt have a menstrual cycle every month.

    When she wanted a baby, she wasnt getting prgnant, so she was re-referred at a different hospital. This time they told her she had a typical case of poli cystic ovaries. And then went onto fertility.

    Cancer wasnt even thought off. This was just before my own ovarion cancer diagnosis, I was diagnosed at the age of 52. My own mother was diagnosed at the age of 42.

    We had no idea that we all had this braca gene mutation which gives us a 55% life time risk.

    This type of cancer doesnt usually effect woen as young as their 20s although it has been known, it is rare.

    I worried about cancer all through my adult life, this is only to be expected when there is a family history.

    It is so easy to say dont worry, because I know that you still will do. But you may not have results as soon as you would like, in the meantime all you can do is focus on the reasons this is more likely to be down too.

    I wish you all the very best and if you need to chat privately with me then please do that too.

    Love Tina xxx

  • I also forgot to say my niece is also going through a similar thing to yourself, it was not cancer. Hope this helps you feel a little calmer. Love from us all xxxxxx

  • Thanks for the encouraging words. Annie, I have left my details with Ovacome so hopefully I will get support from there too. The initial shock of the possibility of cancer is truly overwhelming. I actually work with cancer patients everyday but to step into their shoes for even one day is a frightening experience.Tina, I have already had an internal trans-vaginal ultrasound which showed abnormal results. I am already feel much more positive otherwise. Thanks

  • Dear Nik, I should also mention that Ovacome have a special group for younger members and this might help. I'm also aware that the Penny Brohn Centre in Bristol held a 2 day event for young women with ovarian cancer. Members on this site who attended said it was excellent.

    Of course I hope it doesn't come to this. I hope the problems are sorted out and the worries can be resolved. Just thought I'd mention this additional support is available should it become necessary.

    with love xxx Annie

  • Hi Nik

    just wanted to say hello and say I know how you are feeling. I am 31 and unfortunately have had the diagnosis of OC and am also recently married- in fact I was diagnosed a month before my wedding!

    I know how frightening the waiting process is but the important thing is that you are in the system and they will find out exactly what is going on. Hopefully you won't have to wait much longer and once you know what you are dealing with a plan can be made. I won't say don't worry because I know it is impossible but I hope you get some answers soon and in the meantime the ladies on here are a wonderful understanding sounding board. Really hope you get good news.


  • I have nothing to add to what has been said; just wanted to say welcome and that I hope it's good news all the way for you x

  • Hello - different experience so nothing useful to say other than welcome and all the best wishes I can muster. It does sound scary, and we have all been there in one way or other. Good that they are cracking on with investigation. Voice all your concerns to the doctors all the way through, wont you? It is important.


    Sue xxx

  • Hi there... you've already been given some sound advice but just wanted to say hello. The CA125 reading is within the normal range but this test is notoriously unreliable as it doesn't have to be raised at all to have this disease. Chances are you won't have OC at all but I can understand your anxieties. Take very good care. Love Tina x

  • HI Nik

    The waiting really is the worst part of all of this as without a full diagnosis you can imagine all sorts of outcomes. I certainly hope that this does turn out not to be cancer. We do get a fair number of women, such as yourself, who have this kind of scare and that turns out to not to be cancer.

    I just wanted to say that even if it were cancer it may not mean you cannot have children. I was diagnosed at 29 and even though I had 2 children already, I was told I could choose to keep my womb so that I could still have a baby. I didn't choose to do this but after my op I was told the womb had no cancer, so I certainly could have done this. I have also been told that it is very rare to get ovarian cancer at this age and that the prognosis is often much better for these women. I can certainly say this is true for me, as it is now over 13 years since my initial diagnosis.

    Do be kind to yourself and try to have some treats to take your mind off this. I usually do not allow myself to think about what if's and just see what happens at the appointment and take it from there. It is hard to do (but I have a lot of practice) ;)

    Fingers crossed for a good result. Vx

  • Hello everyone. Just to let you know that I saw the doctor yesterday and they think it is more likely to be endometriosis and having a laparoscopy procedure done within the month to sort it out. Also they are going to check that everything is working so we can have a baby. I have been very lucky with my doctors who have fast tracked everything through. They have also suggested that I get tested for BRCA gene anyway as my mum died of ovarian cancer at a young age. Overall some very good news. Thank you to everyone here for their kind responses and hope the best for their fight of cancer.

  • This is the best news I've had this week. How brilliant if you can sort out the problem with a laparoscopic procedure.

    Please do keep posting if you wish just to let us know how you're getting on. love Annie xxx

  • HI NIK!

    As your mum had ovarian cancer you may qualify for genetic testing! The Brac1 & 2 genes are indicative of higher risk . I was tested when my sister was diagnosed with breast cancer and II am clear. I am too old for it to affet me but it means that my son, his sons and my daughter should all be clear (boys can carry the gene and pass it on to their daughters).

    I'm not sure if that is helpful at your age!


  • Hi all, just a quick update. I had my laparoscopy yesterday and the surgeon removed the large cyst inside each ovary. The surgeon also said he found multiple little cysts inside the right ovary and has sent it off for biopsy.He also said it was not endometriosis ans said to me ' lets hope it is not cancer'. Now it is another couple of weeks of waiting!!! I feel emotionally and physically drained!!

  • Hi Nik,

    Thank you for the update, it is a very worrying time for you, you must feel no further ahead and so drained, but hold on tight it could be good news yet, I do hope so, thinking of you and sending you my best wishes.

    Love x G x

  • Thanks Gwyn. I was expecting to be walking around today after the laparoscopy but my body feels really weak and I can hardly even walk to the bathroom and prob why feeling so emotional too.

  • Just be kind to yourself, there is no rush is there ? Love x G x

  • The waiting game is the worst part. Your mind runs away with you thinking all sorts of things! I had a laparoscopy prior to my big op and was amazed when the hospital wanted to send me home about 2 hours after I'd come round- I was in agony, so it is not unusual. But after a few days I was feeling much better and I am sure you will too.

    Hope the results come back as soon as possible.


  • I hope you are feeling much better soon, and that the results dont take too long.

    Regards Barbara.X

  • Dear Nik, I hope that you're feeling a bit stronger by now. It's not surprising that you're feeling weak though. You must be worrying and that is exhausting in itself. As others have said, though, waiting is the worst part. It looks as if the medical team you're being treated by have taken steps, to find out what the problem is, at an early stage. Give yourself time, take things easy and focus on little treats for yourself. It's time to think of your own well-being, emotionally as well as physically.

    Love Wendy xx

  • Thanks all for your kind responses. I am walking around a bit more today and bit stronger. Poor belly is swollen like I am 6 months pregnant. Being ultra pampered by my husband and mother in law. Makes a big difference for close ones to just be around.

  • Hi Nik

    Glad you are feeling a little better.The waiting for results is a very stressful time but yes it does help to have people you are close to around you

    Take care

    Anne xxx

  • Hi Ladies, i got a call from my consultant today who said the results have come back as borderline. Well I suppose it could have been worse news. I know they didn't completely remove all the cysts in one ovary so i expect I will be going back for surgery to remove that ovary?? also going for a CT scan to further confirm results... I need a good holiday after all this... really drained

  • I would say its good news, good luck i,m sure everything is fine. Xx paul

You may also like...