3 Month Review

I saw my Oncologist today, I finished Chemo in October, and this was my first follow up, I was delighted that my Ca125 is 4 - I felt a bit deflated when she said it will return, just a matter of when! she said I have a few lumps and bumps in my tummy, but at present they are not cancerous. She suggested I just go and enjoy life while I can and not to panic until I have to, and she will see me in three months, that has left me thinking how long is this remission going to be, and feeling a little scared. It seems you get a positive in one hand and a negative in the other and have to work out a balance.

Mo

10 Replies

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  • Good news! Just focus on the right here, right now mentality. As in 'right here, right now, I am fine' I was told that it might come back any time, I may get five or ten years if I'm lucky. Well, I won't tempt fate but ..........that was ten years ago. Plan a treat! :-) Well done

    Love Wendy xx

  • I would run, not walk, for another oncologist. I'm sure you've read drdu's blogs about staying in remission with ibuprofen, which is worth considering. Nobody can see into the future, and there is a line of responsible medical thought which holds that patients tend to conform to doctors' expectations.

    Did you ask for an explanation of the lumps and bumps? Strangely unscientific language.

    It is very good to have a CA125 that is below 10 - some say that is a positive prognostic factor.

    I'm sorry, I'm not an oncologist and I don't know the specifics of your situation, but it does seem unreasonable to issue a dire prognosis rather than congratulate you on coming through treatment so well and wishing you all the best for the future, with the proviso that your cancer - like anyone's - may come back.

    Why do oncologists concentrate on the negative? I had an oncologist like yours, which I fled. The overwhelming thought I had when she was issuing her various warnings was that she was actually trying to make it easier for herself should I have a recurrence, because I would be well forewarned.

    Nobody can foretell the future. Treatments are improving all the time (I wish I could say the same for oncologists). Some of us do better than expected and some, sadly, do worse. I think doctors should help us to stay well, rather than prepare us for becoming sick again.

    Try not to let this negativity blight your happiness as your return to health and, I hope, stay there.

    Cx

  • Well said .... You have hit the nail on the head.. NO ONE knows what the future holds not think you should live your life without to much worry.. Easier said than done I know because I do worry all the tim.. But your oncologist does not sound like one of the good guys she should give you positivity.. A CA125 of 4 is brilliant i dont think ive ever had one so low.. So hold your head high and keep looking forward.

    Lots of love

    Suzanne. xx

  • Dear Mo,

    I'm of the same opinion as Kirsty (chrystynh). I was told in December 2011 that my CA125 was down to 7 and the scan results revealed no tumours just scar tissue. I've enjoyed 15 months' remission since then. The oncologist, the specialist nurse and another person crammed into the room beaming with happiness at this result.

    I'm glad they didn't mention the inevitable - or likelihood - that it would return. I'm facing that now but it isn't any worse facing it now not having dwelt on it over the last 15 months. I've had a great time. I've lived life to the full and I've put all my worries to one side. I suggest you do the same if you can. Let tomorrow take care of itself.

    with much love, xxx Annie

  • Dear Mo,

    Sending you my best wishes for a very long remission, it is one day at a time, so onwards and upwards. Lots of love x G x :-)

  • Dear Mo

    Someone on this list, I'm afraid I can't remember who it was, was lucky enough to have a wise oncologist who told her that she must work on the assumption that it wouldn't come back, otherwise she would be paralysed. I have held onto that thought!

    Congratulations on your great results

    Monique x

  • Yes, well remembered Monique, it was me. the wise oncologist was Professor Iain McNeish, formerly of Barts Hospital who will be on the podium at members day. Those words made all the difference in the world to me.

    Mary xx

  • Dear Mo

    See my reply to Monique above. Please try to ignore your negative oncologist. It would be good if you could get one with a more positive outlook.

    Wishing you the best of luck

    Love Mary xx

  • I am lucky that my team appear positive and I am absolutely of the mindset that my OC is on the way out of my life, some may say that I am too positive with my diagnosis but I refuse to be beaten. If I had a team of less positive clinicians my resolve may have wobbled more, life shows us again and again that where there's a will there's a way, so enjoy today and tomorrow and believe and don't let anyone else put negativity in your way.

    Big hugs Amanda

  • Hi.

    To back up what Krystin said, ibuprofen or aspirin might be suitable for you. See my blogs. I don't know all about you, but recommend that you discuss taking one of these with your oncologist and GP. They might well help, but please, please don't start them on your own, without their advice, as they may not be suitable for you if you are on other treatment, and I don't know anything about your medical history. I am a retired GP, and am taking ibuprofen myself, but there is a risk of bleeding from stomach, and it is vital to take omeprazole or the like to protect your stomach from this.

    All best wishes, and good luck.

    Eileen xx

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