Hi everyone just joined the site and I'm so glad I did. My story is very similar to some of yours diagnosed December 2014 stage 3c OC. From then on I felt I had a blue flashing light on my head operated on Xmas eve and spent all Xmas in hospital. Don't get me wrong I'm so grateful they acted so quickly and had the most amazing team looking after me. The usual six sessions of chemo carbo/taxol but had to have volume reduced as had really bad neuropathy in legs and still do. Still on 3 monthly check ups and although I've just had good results and normal ca125 I keep getting a niggling doubt has something been missed as I constantly feel rubbish and have started experiencing new pain in my right hand side. Has anyone else experienced something similar?Thanks for taking the time to read my post

Love Sue

14 Replies

  • Hello Sue, as we all say, very pleased you have found 'us' although very sorry you needed to. Great your CA125 is holding steady. I'd ring the Ovacome helpline nurse on 0800 008 7054 to chat over this new pain; most of us have many nagging doubts but am sure the nurse will help you decide if you need to chat to your GP or ask to go back before your next 3-monthly check-up. Good luck.

    Warm wishes. Lesley

  • Thanks Lesley I was thinking about giving them a ring.

    Best wishes Sue x

  • Hi and whilst I can't offer any advice apart from either ringing the OvaCome nurse or your CNS to bring your appt forward, I wanted to say welcome and hello back. Lots to read on this site if you want to and you can follow people or posts or search for key words too.

    Hoping that I our niggles are nothing but let us know.

    Take care

    Clare x

  • Hi Sue - just wanted to say a big hi & welcome. All the ladies here are so fantastic! I'm sorry to hear about your journey but I hope your latest positive results continue & the niggling is just that (niggling). Have you spoken with your gynae onc about your latest symptoms? My very best to you. Jemima xx

  • Hi Jemima thank you for your welcome. I did tell my consultant about the pain but he didn't offer any explanation about what it could be. My main worry is that it's a very similar pain to what I was experiencing when I was diagnosed. Trying not to read too much into it but it's quite hard when last year I was told very bluntly there was a 75% chance it would return within 12-18 months. Also my sister had a clear scan and sadly passed a few weeks later. Trying to stay positive but I imagine like most of us on this site sometimes it's difficult.

    Love Sue

  • Sue, trust yourself. If you have pain, do not ignore it. You have good reason to be concerned. Also, remember there's a 25% chance it won't come back in 12-18mos!!!! Tesla, also 3C OC

  • Hello Sue, welcome to our site. You've joined a fantastic support group. I am IIIC also but I am about a year behind you. I also had my Taxol reduced by 20% for session 5 and 6 because of peripheral neuropathy. I am currently on my first three month wait until October and I do get worried if I have any sort of pain. However, I don't feel unwell. I get worried say if my side aches from holding my bee-hive frames for instance, but if it's gone the next day, I ignore it. If your new pain on your right hand side persists, it is important to get it checked out. It's a fine line between wondering if there's something seriously wrong or making too much of something minor. I'm guessing that the medical folks must be used this and know the questions to ask to determine if they should investigate further. So do try the Ovacome helpline or your CNS.

    It's really good you have normal CA-125 results but what do you mean about constantly feeling rubbish. Is it pains or worries?

    All the best, Helen

  • Hi Helen yes I am going to ring the helpline it might ease my mind. When I say I feel rubbish I mean I never feel well. I get completely exhausted just doing simple things and it's so frustrating. Interestingly my recent scan shown a lot of wear and tear on my vertebrae on my spine so that would account for my back pain but it's the tummy pain that concerns me. I guess without any evidence to suggest the cancer has come back I should stop worrying but the saying that you know your own body is quite true

    Best Wishes Sue

  • I have had intermittent pain in the lower right quadrant of my belly ever since my operation. My tumour was in my right ovary. Although the tumour was quite large, it was still stage 1A because it was entirely contained within the ovary - it was a mucinous adenocarcinoma and they tend to grow quite large in situ before spreading elsewhere.

    My surgeon assures me that the pain I get is from adhesions, which are almost inevitable in people who have had the sort of op we had. Our guts tend to react to being handled by developing adhesions, and they are inevitably handled during our operations. Apparently pain from recurrence is likely to be constant, whereas pain from adhesions, while persistent, varies much more in intensity.

    Hope that is some help, but do get in touch with your CNS if the pain persists. She'll be able to reassure you, and arrange for you to be seen if necessary.

    Best wishes,


  • Hi Barbara thanks for your reply yes I have heard you can get pain from adhesions so hopefully that's what it will be. My consultant said they would be more concerned if the pain was constant but as I explained to him my pain was never constant even when diagnosed with stage 3c. Didn't seem to know what to say after that but if it persists I will ask for my next check to be brought forward.

    Best wishes sue

  • HI Susue, welcome to the site, it is normal to worry when we get an ache or pain especially after treatment is done. I would think ring the Ovacome Nurse and have a chat with her, It is normal to feel achy after carbo taxol for up to a year or more. It is also normal to feel tired and fed up, Your body has been through a lot in the past year so it has to heal too, Some aches do come and live with us unfortunately. However I think ring the Ovacome nurse or speak to your gp. best wishes

  • Hi Suzuki thanks for your reply and I will take on board about the pain and tiredness and also have a chat with the ovacome nurse. Best wishes to you x

  • Hi, welcome to our 'club'. I think you should give your CNS (clinical nurse specialist) a call to discuss this new pain . Good luck. Ann

  • Thanks Ann it was actually my cns who referred me to my consultant guess il'l just have to wait and see if the pain gets any worse. Kind regards sue

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