Feeling Scared (again)

Saw Consultant in November post first line treatment. Day before, nurse at GP surgery confirmed CA125 was 52 post chemo 6 same result as post chemo 5 so I totally flipped as to me if treatment has worked CA should be less than 35. Consultant was reassuring and said she was 'not that concerned about the CA125 level' and was more concerned by how I felt which is really well. Said she would see me in 3 months time but would arrange a 'non urgent' scan and said when I asked that she is hopeful I am in remission. Got scan date in post yesterday for 29/12. Feeling really scared as cannot get my CA125 out my head and keep fearing the worst as I am stage 4.

Can any of you lovely ladies offer me any advice or reassurance.

25 Replies

  • I think some hospitals (mine didn't) don't give the CA 125 results during treatment and this may be because we can get hung up on them and/or they don't tell a particularly clear story.

    None of us know what our starting point "normal" CA 125 result was before we got cancer.

    Some women on here are living well with very high CA 125 readings, compared with yours (which is within spitting distance of the "normal" range).

    Your scan at the end of the month is the routine one they do after treatment.

    I'd focus on the great thing which is that you're feeling really well and your onc feels hopeful for you.

    We can spend our whole life with this horrible disease losing the good time worrying about bad times a-coming - perhaps......and there are no certainties in any direction.

    Try not to let your understandable worry about your scan (which we all recognise and understand) cast a long shadow over the "festive" period!

  • Hi Mac

    Thanks for your reply. Great thing about this site is you know exactly how I feel. I so want to forget and live in the Now and here I am wasting my good health on worrying about the future. Been thinking about doing a sponsored swim so I might do that at least its something positive to take my mind of things. Hope you are OK and get the most out of the festive period. One good thing for me is I am not spoiling my families Christmas as told them consultant is happy wanted to know how I felt, pleased I am well and will me again every 3 months, plus will arrange non urgent scan as I am feeling so well which when I say it like that sounds OK. Not too sure about the scan date of 29/12, will be away until 27th and have a party to go to on 28th so I will have been drinking copious amounts of wine every day since 23rd! Lol x

  • I totally understand your worry. I flipped recently when my result doubled (from single figures) but the change was due to a different machine and reagents.

    I think you have to focus on what is good. Your CA125 is stable, which indicates strongly that nothing nasty is going on. Most importantly, you are feeling well. In an ideal world, you would be able to have your scan sooner. Perhaps you could call your hospital and discuss your fears with your CNS? If you were recurring, your CA125 would have risen. Meantime, please try to hold to that thought. Best wishes, Vxxx

  • Thank you V, did speak to CNS as she was there on the day I saw consultant she did not seem that concerned and said the same as you that it had not gone up! Best wishes to you also x

  • I completely understand your anxiety and stress when facing monitoring. CA125 is an indicator only. Following chemo my CA125 is down in the normal range, but unfortunately my disease continues to progess. It's easier to say than do, but enjoy it so much when you feel well. I had a fantastic summer, on 3 rd line chemo, which treated me well. have a wonderful Christmas. And wishing you all the best for the New Year. Maureen

  • You too Maureen hope you feel better and have a good Christmas xx

  • Hi there. It sounds as if receiving the date for your scan has triggered off distressing thoughts. Because we are human, our minds tend to go into a negative spiral, assuming the worst. The situation is no different now to when you went for your swim the other day :-) but the scan has now ( understandably) increased your anxiety levels.

    Nothing has changed. Your onc is pleased with you. You feel well and are looking forward to a Christmas break. The CA 125 may well be your natural level and although I struggle to get my head around the wretched thing it does seem that stability is more important than overall levels.

    You are symptom free so that's really, really good. For what it's worth my recent recurrence was heralded by discomfort for a good 2 months, as well as rapidly rising CA125 ( although it's never been as high as many ladies on here). My onc reacted to my symptoms, not the CA which actually went down a little between scan and starting treatment!

    Put that scan in the filing cabinet with the dark thoughts. They will need to come out again but not yet and not now. Try and plan something nice for each day now over Christmas. Go for more swims if you can. I know this is not easy and I fail most of the time. But I do know that I spent a lot of time worrying this year when I could have been getting on with life- and it's made not one jot of difference to the outcome but has sapped me of energy. That's energy we need to deal with this thing.

    Sending love and hugs, Elaine xxx

  • Thank you Elaine, will visualise putting the scan date letter in a filing cabinet and slamming the drawer shut and putting a padlock to boot! Will go swimming every day as when I go swimming its hard to feel depressed as it does give me the feel good factor as any exercise does. Trouble is I mope about till it starts to get dark and end up not going but am going in 15 mins just after I have read my replies. Hope you are following your own advice, sending you a big hug xxx

  • I'm kinda in the same boat as you raising CA125 . CT scan on Christmas Eve results on the 2nd Jan. But I am determined to do as much as I can so, IF and WHEN things are not so good I can look back on all the memories, travelling, new friends and things I have achieved. Cancer is not going to rule me. Only yesterday I traveled on my own down to London for the second time in a week had a fabulous time with my daughter. Sadly all went haywire on the return journey as all the trains to Norwich were cancelled as there was a fatality on the line. This meant a mad dash to Kings Cross a journey to Cambridge then on to Ely change of train (another mad dash) to get the train back to Suffolk. I was a bit worried I can't do mad dashes anymore but I made it. And sadly last night for what ever reason someones life came to an end. Be strong try to enjoy the here and now. Good luck with your scan

  • Thank you for your reply and wise words, you sum things up really well you are so right I am going to try harder to not let the b***er rule me. I am travelling down from the Midlands to the Kent coast on 23rd with my twin sister, we are all going to my sisters for Christmas, our families are travelly down by car Christmas Eve but we are going a day earlier because we can but neither of us will drive the M25. My sister says she is really looking forward to it. They will expect me to walk to the pubs and go long walks along the sea front so I'd better get my energy levels up with the swimming! You deserve a big pat on the back for the dashing to get trains! keep on doing what your doing its really good to hear xxx

  • Hi, the feelings you are having are normal. Anxiety levels tend to rise with reviews, scans etc. When I was going through chemo I recall my CA125 level only going down by about 2 between chemo 5 and 6. The level was checked by my GP 3 months later and it had dropped by another few points. Try to not become too fixated on the result, you have said you are feeling well and that's the main thing. Long may you continue to feel that way. Ann xo

  • Thanks Ann, hope you are OK, all the best to you and your family for Christmas xxx

  • Thank you. You too. xo

  • Hi,can totally understand how you are feeling,unfortunately our minds sometimes run out of control,this is despite our determination to stay positive.

    I too am stage 4,on diagnosis I was told that I would have five years max!! I have received no optimism from any of the health professionals. Just about finished first lap if chemo, and although I gave been through the mill, feel great at the moment.

    My CA level has remained at 12 for some time now, thus is despite the dIscovery of lung tumours, which my oncologist could not confirm that they were Ivarian cancers, only probably were! So my blood tests had reduced despite the lung cancer, which made no sense to me.

    Unfortunately the facts are that I really believe that they cannot be sure about our cancers, as will be seen from this website,everyone is different, with some of the symptons ,diagnosis and treatments. Our only common thread is the anxiety and uncertainty as to our future.

    Bottom line must be to listen to our wonderful bodies, embrace the times when we feel good, and listen to the fantastic survival rates of some of our sisters, and pray that we will be one if the lucky ones.

    In the meantime,relax and have a great Xmas xxxxxxxxx. (Please excuse spelling mistakes,have a problem with corrections on this site!!)

  • Jackie, many thanks for your reply. I think I would change consultants if they gave me negative vibes, we are all individuals and they dont know how we will respond plus things are improving and we are all getting better treatment. Thanks for your good wishes. Big hug to you xxx

  • All sorts of things can push the CA125 result up. My doctor (onclogist) told me that it's the trend that matters rather than the actul number. I hope your scan goes ok and allays your fears. And that you can ignore it for long enough to enjoy Christmas. What a bum time to have a scan ! But I wonder what you mean by 'fearing the worst' ? There will be more tratment you can have and there a women around who have been treated at stage 4 for years. I was diagnosed as stage 3/4 in 2010, though that seems nonsense to me. Either it's spread or it hasn't. I have spread outside the abdomen now and was treated for that in Oct 2013 but I am fine right now. All the best. Lx

  • Many thanks L, your reply gives me hope, its just the CA125 number I don't like xxx

  • Don't let this get you down, finished 4th line chemo in Aug and on Letrozole, CA125 levels rose, which can be caused by bowel problems as well as many other things. It is not an exact science. If you are symptom free, enjoy, things are probably OK, try to forget it and enjoy Xmas.

    Joanna xxx

  • Many thanks for your reply, have a lovely Christmas yourself xxx

  • Hello I also am stage 4 with secondary OC in my lungs. Finished 1st line chemo in September. My end of chemo scan showed that the disease was stable. Today 2 months later I have had another scan and will see my oncologist next week. In the intervening 2 months I have tried to be positive and upbeat. Obviously worrying thoughts always come to the surface you can't help it and it is natural to worry we all experience it. I will be a bag of nerves until next Tuesday. I have never been told what my CA125 is and after reading various posts I don't think I will ask as this reading appears to be just one piece of the diagnosis puzzle.

    Good luck with your scan. Enjoy Christmas first


  • Hi Ena, thanks for your reply its good to know we are not alone and you know how I feel, Good luck for your scan results too, hope you get reassuring news and best wishes for a happy Christmas xxx

  • Hi there it is okay to feel scared but we all feel scared from time to time. Your 125 remains stable which is good and you feel good. I know its a bummer having the scan so soon after Xmas but try not to think about it. I dont have a scan for another few months, my onc was pleased with me, he said bloods were good got no numbers. They were over 3000 and more when I was diagnosed originally. I never asked the stage as originally I was supposed to be borderline after surgery. I know it did spread at one stage into the tummy, that cleared up but there is a little piece of ovary left that cant be removed as its next to a major blood vessel so it will always come back on that. At the moment, finished Gemzar in Feb and staying on Avastin which is working so far for me. Try to enjoy your christmas with your family and drink loads of water night before the scan. You are entitled to the vino, arent we all if we can take it. So come back on if you are still anxious, and we will always try to settle you a little. Wishing you the very best

  • Many thanks for your reply, feel a bit better Today been swimming which I know gives me a lift. Just going to try and forget about the scan for now and enjoy Christmas. Wishing you all the best too chick xxx

  • Just wiped out my original 'long and encouraging' reply. So here goes again.

    Please, oh please, don't lose hope and trust your consultant. Sometimes, we ,i.e. ourselves, put too much emphasis on the ca125 readings and levels and we know in our hearts & minds that it is only one indicator.

    Try to forgot everything until 29/12 and try and enjoy Christmas with family.

    will post separately on my last chemo treatment & scan and of course, the disaster of the whole day.


  • Bless you Daisies, I do that sometimes type a long well thought out reply and loose it! I am going to try really hard to follow the good advice I've had on here as should know from past experience a lot of our worries and fears are mostly needless worry so is a huge waste of valuable energy and time over nothing. Best wishes for Christmas. Shame we don't all live close, we would have amazing get togethers xxx.

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