Ca125 currently at 197, I'm 20 years old with 20 month old baby - surgery on the 26th august - feeling really down

My surgery to remove the tumor from my ovary is on the 26th.. It was supposed to be about a week ago but the receptionist didn't realised my consultant wanted it done urgently so after them having to juggle everyone about I finally was fitted in. I'm 20 years old and was having problems ever since I had my daughter in november 2009, since then I have had 4 miscarriages and in and out of my doctors and a+e in pain but always got the same responce, doctors always thought it was pregnancy as I'm 'of pregnancy age' and I was always ignored. In june I was in and out my doctors and a+e hardly able to move I was in so much pain, I had been saying for about a year that I couldn't eat, even the smell of food made me feel full, yet the doctors kept telling me to come back in a few weeks and do a pregnancy test even though I was telling them I was no way pregnant, I was having loads of scans yet no one checked for cancer, I keep getting told I'm the wrong age and I've had a baby, but clearly it happens to young women and women that have had children as I'm a perfect example. As soon as my ca125 came back high I was being rushed in and out, having mri/ct scans, blood tests constantly. So now my operation is 9 days away. My surgeon didn't even realise it was me, when me and my mum walked in he started talking to me mum and seemed shocked when he realised it was me he would be operating on. He was so vague, didn't explain much, just said I'm being treated as a cancer patient, they will remove the tumor through keyhole surgery and then have a look around to see what's else they can see, he said if everything is stuck together as it looks then he will have to cut me open (I have no idea what he means is stuck together), they hope to save at least one of my ovaries, but he doesn't know yet, he won't know wether he can save both or if I'll be having a full histerectomy untill I'm opened up.. Everyone keeps saying its fine cause I have a baby already, but at 20 years old that doesn't stop it hurting that I may never be able to have another. I reallyt don't know what's going to happen. All my friends seem to be avoiding me now, like they think I'm contagious or something. During the day I'm fine I get on with things, but I live on my own with my 20 month old baby and I feel so sad. I've not cried to anyone yet, no one wants to talk about it with me, everyone just says "youl be fine" and then change the subject so I just carry on, its at night I think about it, and think about worse case senario and my little girl not having me around, she doesn't have a dad so if I'm gone she has no one.. Just feels all a bit sureal.

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  • Nikki.. my heart does go out to you!! I dont know what to say myself really..but I understand your feelings.

    I am 31 and the pain I felt when someone said to me,' well you could always adopt', was like sticking a knife into me.. I totally understand your feelings about the possibility of having a hysterectomy and no longer able to have a child...Its such an empty feeling inside isn't it? I did not even think about how the cancer would affect me as I was so consumed with the heartache of not having children. I just dont know how the doctor could say such a horrible thing to you, it does not matter how many children someone has, you still feel the loss of not being able to have any more, how insensitive of him. So, no its not ok, and no its not fair at all! and if thats not enough emotional pain to go through, you have the added worry about how this is going to affect your child too.

    The lovely people on here will be able to offer more support than I can really, I still struggle with the emotional aspects of it all and taking one day at a time. that would be my advice, dont look too far forward, one step at a time. My surgeon decided against keyhole, so I was opened up and lucky to have only one tube and ovary removed. I am having chemo at the moment and depending on how that works out, further surgery and a full hysterectomy may be necessary.. so yes I do understand how you feel.. I find it difficult to talk to my friends and tend to brush off the conversation myself, I know its hard for them to deal with too. Perhaps your friends feel the same way and dont know what to say so try to avoid the subject or even you for fear of saying the wrong thing. I know that you do need to find someone to talk to about your fears and worries, and you certainly need to understand whats going to happen to you.

    My tip to you would be to write down anything you dont understand or any questions you have, and go see your doctor or even your GP if you find them easier to talk to, and ask them to explain. I found the Macmillian nurses to be fantastic and not forgetting there are volunteer & nurses on here who will be able to point you in the right direction too... just remember you are not alone but you do need to talk xx

    Good luck with the op...big hug to you and your daughter.

    Julie x

  • Nikki

    I have just been through what you are approaching. The not knowing what is happening is the worse thing. I was told 2 years ago I had an endrometrioma cyst and it was not removed as I was trying to have a baby. Even though I have a 1 year old I was devastated when I found out I could not have more children. When they opened me up they found the cancer had spread so I had a hysterectomy, both ovaries removed and some bits of gut and lymph nodes removed. It is quite a big operation so don't underestimate it. I'm not trying to scare you but sometimes if helps to prepare. Also I can't do any lifting for 6 weeks so it's worth looking at other childcare help. Saying all this everyone is different. You don't know what they will find at surgery so try not to think about the worse case. Every day gets a bit easier. I'm sorry your friends are acting weird I found people don't know what to say so I am very honest and tell everyone what I am going through and how they can help.

    I was only diagnosed a month ago, I am 39 but I do understand how you feel. Good luck on the 26th. Xx

  • Hi Nikki

    You have had a horrible experience so far. No wonder you're feeling so upset and confused. It's so frustrating when you know that things are not right and no-one will take you seriously, but unfortunately it happens a lot. I was sure something was wrong for around three years and was told it was just the menopause, or stress .... the truth is, a lot of doctors don't know what to look for when something is wrong on the ovaries. Anyway, that may explain but it doesn't excuse the treatment you have had. Just focus on getting the appointment as soon as you can. Try ringing the gynae/oncology specialist nurse in the hospital, they are so helpful and have more time to talk than the docs and they all seem to be really understanding people. The advice to take things one day at a time is great advice. Try not to look so far ahead that it gets all blurry. You only have to deal with one step at a time. Try to reassure your daughter, she may be picking up on your anxiety and will probably need loads of cuddles and loads of cuddles with her will help you too. If they have to do a full operation, it may be best, cos they will be able to cut away any cancer or potential cancer sites. i had a full hysterectomy and all other bits removed, including the omentum, where there were a few cells growing. It meant that I didn't need chemo, as my ovarian cancer was borderline. It does take 6 weeks before you can lift anything heavy though, so do try to investigate help with your daughter for the immediate 6 weeks after the op. If your team find that keyhole does the job, it won't be wasted, cos you may feel tired after the op. As for your friends, I know what you mean..... I found I had to broach the subject myself, almost to give them permission to talk to me about it. I think they thought I'd fall apart and cry if they asked me hos I was feeling. I just wanted something in my life to remain as normal as possible, so I started a lot of conversations with "Well, I never expected to be talking about cancer, It's a bugger, it's scary, but I do feel OK to talk about it."

    Anyway, you have taken the first step in supporting yourself. This site is great for when you need an ear, someone who has experienced some of what you're going through. Your own well-being is of the most importance to you and your daughter, so try to treat yourself kindly, give yourself a few treats, take things really easy. As another woman on here said, this waiting time and the not-knowing time is the worst you will go through. It does get easier to deal with, I've found. I had my op nearly 9 years ago now, by the way .......

    Good Luck, and keep in touch

    Love, Wendy xx

  • Thankyou for the replys, I didn't think I'd get any. My operation is coming on the 26th. My mum is coming down from peterborough to look after my little girl.. I don't really know how I feel about any of it, It still doesn't feel very real yet. I've been looking around and a lot of people are saying about their ca125 being around 30's- 40's but mine is 197, I don't know what this means. I havnt had much infomation about anything really... When I talk to people all they say is stuff like, are you sure that's what it is, and no one seems to believe that its happening. Even my mum has had people saying oh it just a cyst, no matter how much we tell them I have been told its cancer no one seems to believe. Its really strange, I know I should just ignore them but I feel like these people won't be happy untill I'm layed in a hospital bed really ill, I kno I should ignore it but they are people I thought were my friends. The people I thought would support me but they just aren't.. I've been looking to try and start a run or something to raise awarness that it does effect younger women, but I don't even know where to start.

  • Hi Nikki, I'm just waiting to get my operation now. I'm 32. I remember having my first operation at 19 (before the 'C' came into it) everyone my age ignored it. It was like the elephant in the room. They're in a different place and have different priorities, especially if they don't have kids. It's surreal to have your plans for life changed so instantly and to have to think about the what if's of something like that when you should be enjoying being young. To go from thinking about nights out with the girls to life with Cancer within weeks is hard and your 'friends' won't have a clue. When people don't understand, often they avoid stuff.

    I've so far not told people because I don't want to see people squirm with me! lol.

    If you know anyone in business who can support your ideas for events that's a great start.

    Thinking of you on th 26th,

    J

  • i love u nikki lol love me bilbbi x

  • Hi Nikki,

    I'm so sorry you've had such an awful experience so far, my heart goes out to you, it really does. Surgeons can be great at doing operations and totally crap at the people side of the job sometimes - it takes my breath away sometimes to hear what people have had said to them. It's also very, very hard when our friends don't respond the way we hope they would, like you I've experienced a wide range of reactions, and it's been incredibly tough at times, getting very different (unhelpful) reactions, like people avoiding you. I know it's not much comfort, but I've found that through this experience I really now know who I can really count on, and who is better not to see so much, and I really treasure the friends who have shown they can be there. Online friends are great too and I've met some wonderful girls with OC both my age (34), younger and older, through this site and others - it helps so much knowing they've been through similar experiences and can really share your feelings.

    I understand too how difficult to can be to get across to people that you do have cancer although you're young - although I'm 34 that still counts as 'young' as far as OC is concerned - and my gynae was adamant right up to my final op that I couldn't have cancer! I had keyhole surgery initially then the doctors opted to open my tummy up properly to be able to see whether the disease had spread- yes, this was more to prepare for mentally, and I needed more help afterwards, but the docs made it clear that this was the very best way they could protect me and try to preserve my fertility. being able to have a child was absolutely the biggest issue for me. For me too the prospect of not being able to have children has been and is absolutely devastating, and I know it must be just as hard to hear you might not be able to have any more - as Julie said above, it's like an empty feeling inside, and as though all your expectations of your life are blown away. All I can say is please do get support from all us girls on this site - say whatever you feel and we will listen. There are far more young women with OC than most folk realise - and when you've recovered from your surgery there are other options that you could look into - both for awareness raising and just support - Ovacome run a support group in London for young women affected by OC for example - some have kids and some don't, but we all have similar issues (and I'm hoping there might be groups in other regions set up too!)

    Lots of love and wishing for your surgery to go really well

    Cat xxx

  • PS Nikki I meant to say, my GP told me that the CA125 is a very vague measure - it can pick up on all sorts of inflammation in the tummy area, it doesn't have to be OC - I know this might not be much comfort, but I wouldn't personally assume ANYTHING from the CA125 count - my doctors do not rely on it at all.

    Cat xx

  • Nikki, Do try not to let your first experience get you down - you will make lots of lovely 'friends' on here who will help in any way.

    I am saddened by the way you have been treated but perhaps they feel a bit 'embarrassed' by your young age? As for your friends ignoring you - that can happen to any of us - it could be as simple as they don't know what to say for fear of hurting you or upsetting you.

    I would also say don't be too worried about a raised CA125 - as others have said it is not a true indicator of anything sinister hun! I had my tumour removed in Oct 09 and mine fluctuates between 10 and 40 and I still have regular check ups.

    Its great that your mum is coming to look after you and your little one - pls talk to your mum about your worries and we (as your sisters and aunties!!) are here most of the time if you need to let rip (as we all do from time to time).

    Will be thinking of you on 26th and praying all goes well. Pls take time to recover and rest up.

    I am sure one of the nurses on here would be willing to chat things thru with you so pls give them a call as they will explain about CA125 etc.

    Sending you hugs

    Sheila:)X

  • Hi Nikki

    my heart goes out to you. What a rotten time you're having.

    As the others on this forum have said, CA125 levels are not the only thing that oncologists look at. CA125 is a marker for tumours but it can be high from any inflammation and the clinicians will use CT scans etc much more to establish cancer than CA125 levels.

    My cancer was diagnosed initially as a cyst and was going to be removed by keyhole surgery. However, my case was referred from gynae to oncology for their opinion and I had a full hysterectomy, appendix removal and part of the omentum also. The cyst was then called a tumour ever after. Apparently my ovary had stuck itself to the bowel and so some surgery was done there too.

    It does take a good 6 weeks to recover from that surgery and you may then be offered further treatment.

    You are obviously in good hands though and things are moving at the speed they should. Let your Mum look after your daughter and you! I found that hard at first but it's been a blessing. Talk to your friends; they are probably in shock too! Many people will want to offer practical help so don't be afraid to let them do things for you.

    Ruth is one of the nurses at Ovacome and she is really good to talk to.

    We will all be here for you too.....good luck with the operation and let us know how you are when you can

    Sending you a hug

    Eleni x

  • Hi Nikki I am so sorry that you are going through this at such a young age, not something you should be worried about. I was 52yrs old when diagnosed and I had no children of my own but looked after them all my life. I had ovarian and womb cancer and was devastated when it happened, but do you know I can here the spark in your words that even though I dont know you I know you are a fighter. You are wanting to do a run or event even when you are in turmoil, that is so strong and courageous at such a difficult time. I am 3 and a half years down the line and am doing well. Hit with chemo and radiotherapy after surgery and still positive and having fun. Use your macmillan nurses as they are fantastic. All I can say is we are all here for you and please let us know how you get on. Lots of love, Linda x

  • Hi Nikki

    Take all the help you can before during and after- I'm sure your Mum will take great care of your little daughter.

    Love and prayers for the op.

    Anne

  • Thankyou everyone for your comments, I feel a lot happier today then I have done for a while, just talking about it feels like a weight off my shoulders. I just want the operation to be done now so I can move onto the next step, I've found the easiest way to deal with this is to just get on with it, I feel if I let myself get upset then I'll just go on a downward spiral, but does feel like I've got to put a front on about it all and pretend everything is fine when really every now and then I have to go upstairs away for a moment and have a cry and then come back down and start again. I was supposed to be going nback to college in september, I'm a bit upset I can't do that now really as I'm going to be in and out of hospital too much.. I've been keeping my mind off it by trying to find a way to have some sort of event for girls my age to know more about oc, for so long I kept getting told it was just my hormones so it makes me wonder how many other girls my age are getting the same response, if there are any events going on I'd really like to know as I think it will be good to keep myself busy and already just hearing everyone talking about it and me being able to talk about how I feel has seemed to really help me already and I think the more support the better.. Just waiting for the 26th to come now

  • good luck for 26th please let us know how you get on, will be thinking of you. x

  • hi,, i cant really offer anything at moment as im still in the middle of having all that you have described.. i had the full hysterectomy 3 weeks ago.. i just wanted to say that i know exeactly how you feel and that people do just say oh you will be alright, i know how upsetting this is because when they say it they really dont know that you will be.... its just someting for them to say.. id rather they didnt say anything... you are young and have strength on your side im sure you will see your daughter grow into a beautiful woman but i do understand your worries.. im here if you need to off load and im wishing you luck for your op.. be positive keep your head high.. and think of your daughter she will get you through this im sure.

    big hugs hun. xxxx

  • Hi Nikki

    I am so sorry you are having such a rotten time. The CA125 is only one of four tests that they do to test for ovarian cancer and your CA125 of 195 isn't too bad, mine has been 6-800 so try not to worry about that. Also I was diagnosed 7 years ago and am still here to tell the tale! The other tests are what symptoms you have (sounds like they will listen to you now they know its cancer); the CT scan and their own examination of you.

    Keyhole surgery sounds as though they are taking note of your age and wish to have more children and are trying to help you with this so that's encouraging.

    There are lots of helplines as well so please ring them, I have rung the Ovacome helpline many times and found it a great comfort.

    I wish you lots of love and will be thinking of you on the 26th.

    Clematis

  • will be thinking of you tomorrow, good luck,please let us know how you get on. x

  • Best of luck for tomorrow. Try to keep positive x

  • Dear Nikki,

    I hope your op went well. Your message moved me to tears because, at your age, it is hard to know how to deal with people - especially doctors; and friends who are embarrassed to talk about what is happening to you, I think they will respond really well if you ask them for help and support - even if it's only talking/listening and you telling them your fears. I think you need to tell your friends that you need to feel able to talk to them.

    My experience is that it is a constant business of checking up on GPs - whether they have sent the promised letter/ whether it has been received at the hospital etc. Whenever you phone the department dealing with you at the hospital get the name of the person you speak to - ask for the number of the consultant's secretary. When you see a consultant or a registrar go in with a list of your questions, written down - even the simplest - and don't be afraid to say you don't understand the answers. If you possibly can, have someone with you when you see the consultant it helps recall (you will be given SO much information that it's hard to remember afterwards). Are you any where near the brilliant, brilliant Royal Marsden in Fulham or Sutton? Do you know that you can choose the hospital you are sent to? I believe that is still the case.

    It has been easier for me. I was diagnosed at 71 (age against me) with a CA125 of 200 and told that it was not really all that high and would come down. After surgery and Chemo, it did and I've just had three and a half years' remission. I've now started my second round and fully intend to beat it again! You sound a really strong young woman and after the shock and the op. try to concentrate on eating healthily, resting and enjoying bringing up your daughter. Ask for and accept help.

    Please let us all know how you are getting on xx

  • Dear Nikki

    How are you feeling, and do you have news after the op?

    I hope you have found some good support by now, as well as the ladies on this website.

    Sara x

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