Feeling let down

Been to see oncologist this week. My CA125 level has risen since my last visit from 57 to 117. The doctor says there is nothing to worry about unless i feel symptoms. He doesn't recommend any further blood tests or scans. I have pushed for a ct scan, told it would be a non urgent one and I would have to wait about six weeks. I keep thinking about these horrible little cells doubling every couple of months. Perhaps I am being over cautious!!

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  • Hi Katie. Sending you a big hug because I can imagine how you are feeling. My oncologist has always reacted straight away to any rise in my CA125 and Ive had an immediate scan. In 8 years+ of living with this disease I have never had one symptom. Can you ask for a second opinion or speak to someone else like patient liaison? The worst part of this disease is the lack of control and what this does to your mental state, the worry etc . Kathy xx

  • Good morning.

    I think you're new to the forum? In which case, welcome...

    It's difficult to know what to say without knowing something about your background with this disease.

    However, we all recognise what you feel at the sight of the numbers doubling.

    Not worrying is easier said than done! My understanding is that the numbers don't translate automatically into what's happening with the cancer cells. But they do most likely say "something is going on".

    Many of the women on here are watching and waiting. The view seems to be to not rush into treating something which is not causing a problem, when the treatment will impact on quality of life and where the evidence of benefit in recurrent disease doesn't seem to support rushing to treat without symptoms....

    They can't win either way! My team has one member who in my view sends me off for scans rather earlier than is any way helpful and it just makes the waiting to see what's going on worse and more long drawn out.

    If you know you'll be having a scan before too long, I'd enjoy the time leading up to it and try not to worry about it.

    We all know this isn't a disease which tends to give nice surprises, but we can try not to let that hang like a dark cloud all the time.

    Good luck with it x

  • Hi there .. I was wondering what type, grade and stage you are?

  • Hello,

    I am stage 3 high grade. Had surgery in August 2014 and finished chemo at the end of January. Since then I have been feeling really well, and still do. I will take my dogs out and try to forget about i

  • My oncologist sent me for a CT scan after my CA125 levels went up as they are a good indicator for me that something was going on, the level had tripled and that's when he wanted to know what was going on. He did act quickly and I had a scan within a week, he was right the spots that were left were growing again and he was able to start treatment straight away. I didn't feel symptoms, I felt really well.

    It's hard not to worry thoug, wishing you well x

  • Thank you for your comments. Sounds very similar to me. I will wait patiently for my scan to come through.

  • If you're being told to wait for symptoms, your oncologist will know that there will probably be growth in the meantime. If the scan shows this, what would be the difference between knowing and seeing proof? Do you think you'll start treatment if growth is confirmed. If I were you (which I'm not), I'd speak to Ruth at Ovacome. Xx

  • Thanks. I will talk to my GP this week ang go from there.

  • I would ask to see someone else or at least question their reasons. My consultant told me when mine rose from 47 to 102 that most consultants would wait and see if it changed again after three months, but he chose to do a second CT after the first was clear. I would definitely push, or ask your GP for a CT referral.

    It's so worrying when this happens, and it feels like the wheels of action are so slow. Sending a virtual hug, hope you feel a little better.

    LA xx

  • Thanks for your hugs and comments. I am going to see my GP this week for his opinion.

  • Hi Katie

    Welcome, if as Mac surmises, you're new to the forum. It's good to share thoughts on here and to listen to different ways women deal with their disease.

    I have only ever had a CT scan booked about six weeks in advance. I think you shouldn't worry overmuch about that wait as you feel well. When I was newly diagnosed and for the first year or so my GP said to call to see him any time and he was often able to explain things better than the oncology team because he knew me well and he understood how I tick. I think it's a good idea to have a chat with your GP if you have worries over the tertiary care.

    I hope you can put it out of your mind, enjoy your walk with the dog and the Christmas holiday. I'm putting everything on hold for Christmas and will deal with everything in the New Year.

    xx Love Annie

  • This post was my first but I have been looking for a while. It is really helpful to get other people's opinions.

    I am definitely trying to put thoughts away until the new year. Busy today wrapping presents and decorating the house and tree.

    K xx

  • Some great advice there but I emphatise with you . Many of us have been in your shoes and it's not easy at all. When my level started to rise my oncologist said it would be better to wait a couple of weeks as if there was something it may be too early to see on the ct scan . We waited til ca125 was 300 and recurrence just about showed in scan . I had discomfort at that stage so started treatment . There are loads of ladies here with rises that did not signify recurrence or ones that are in watch and wait for a long time before they need treatment . I hope you are the former but it is out of your hands so try not too worry . The fact that you feel great is a Really good sign . Don't let the worry spoil your Christmas because after everything you have been through you deserve a really fantasy one . Hugs and best wishes, Susan

  • Thanks for all your comments, it's interesting to know that it is something that happens to lots of us. What you have said tells me more than my oncologist has.

    I have grandchildren arriving for Xmas so no time to worry about anything except where have I hidden all their presents

    Thanks again

    K xx

  • y oncologist and the RM said the same to me. I felt good having a chance to challenge the cancer but knowing that ultimately it would win out!! A bit like a older brother syndrome. Yes, and the cancer has won out, just after my birthday on 2nd December I got the usual old feelings and fortunately I was due for a clinic appointment tomorrow. Hopefully I know what to expect! I was told by RM to go out and live life. I accept this, they have the experience and should know!!

    Hope this helps, Gio

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