Relative benefits of routine CA125s or not for follow up?

Hi All,

I've just finished my first 6 chemos. (Yeay, party!)

My centre doesn't do routine CA125s from now on but relies on symptoms and treats symptoms if they arise.

I had read that some areas do this,citing that it isn't always indicative and it can cause more concern than it is worth.

Does anyone have any experience of this,and what do you think of the different approaches?

Thanks, as ever.

Sue

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10 Replies

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  • Hi Sue

    Well done for finishing your 6 chemos. It must be a relief to have them out of the way. Hope you coped OK with them.

    I had OC about 10 years ago and now do some work, representing Ovacome on a couple of NHS groups as a patient. The groups that I sit on have gynae surgeons and oncologists on them and It is very common now not to do routing CA125s as a follow up, unless there is something else sinister going on. I had a yearly CA125 for 7 years after my diagnosis, the last 2 were on request cos I felt it helped me somehow. I haven't had one for 3 years though. I'm always aware of the signs and symptoms and if I ever have any fears or queries they are investigated very quickly via my CNS, who I'm still in touch with. The specialists are aware it's like a "comfort blanket" to have a CA125, but sometimes they can cause more anxiety than comfort. This has been researched exhaustively. Of course, when CA125 is given as on-going monitoring of treatment, and has proved indicative in the past, it's still effective. No-one is doubting the validity of it on some occasions, in some settings, with some patients ...there, that's as clear as mud, isn't it? Ask your CNS (specialist nurse) if you are really worried. They often give one on request to allay any anxiety.

    All the best

    Love Wendy xx

  • Hi Sue

    Brilliant news......you've got through it. My Onc doesn't do follow up CA125s for the reasons stated by Wendy however, if I really wanted one I could have one. So I relay every little twinge and ache to her on my 3 monthly appointments just to make sure. It was strange at first because I felt I needed that 'comfort blanket' but as time goes on it's not so important to me, but it's personal choice. Have a great Easter.

    Love Chris x x

  • Hi Sue

    I've read about this approach, and although I understand the thinking behind it

    I would be worried witless if I were not having regular CA checks.

    My reasons are that firstly I, like a lot of women, was totally unaware I had any symptoms until the disease was advanced. Were I not having regular CA tests I would probably be at the hospital or GP everytime I had a pain or problem.

    Secondly, I've justs lost a friend to this horrible disease and sadly she went from symptom free almost to disease out of control and no further treatment because it had spread so far so fast in the space of just four weeks. She passed away just four weeks after that. If no regular checks then I would be seriously concerned about this possibility.

    And thirdly, OC can spread itself all over the body, surely the longer the wait (for symptoms to appear and be recognised and a treatment organised) the more chance it's spread to another site and the more difficult to treat.

    I have regular tests and I'm comforted by them regardless of result. I'm not obsessed by them but they allow me to understand what's happening to my body, help me to think in advance about where the disease is heading in terms of recurrance and make sure I don't get any more major shocks out of the blue.

    As you can tell Im totally not prepared to have anybody tell me "no regular CA" ...... Saying the test is nothing more than a "comfort blanket" makes me feel I'm being patronised by a largely male dominated medical/research world.

    I've never written so much on here but as you can tell I feel really strongly about this. Good wishes for a long remission . Meryl XXXXXX

  • Thanks so much. ladies.

    I don't know how I feel about this, but probably on balance would prefer regular tests, although I doubt I'll have much choice.

    Meryl,

    I'm so sorry about your friend. What a shock for you. We are all too aware of the nastiness of this disease. At least having the contacts we do here, we can hold on to all the people who have good remissions, and believe that this can be us as well.

    Much love

    Sue

    x

  • Yes it was a shock and I've not mentioned it on here before because I didn't want to depress our sisters. And yes the support and seemingly boundless optimism I find here gives me much strength. I'm in my third remission the first two of six months and although CA rising again hope for a third of similar length at least. May your remission be a long one. Meryl XXXXX

  • Hi Sue,

    I certainly rely on ca125 tests to keep me sane(ish) since my treatment. Like Meryl, I had no symptoms that gave any indication of my disease which was stage 3c, grade3 by the time it was discovered. Ca125 was a good marker in me, so I have an arrangement with my GP that whenever I feel at all worried I can go to the practice nurses and have a test. I get very frustrated and angry at the suggestion that one can monitor ones own disease by how one feels, when for the 3 years post operation I have had all sorts of symptoms which must have been reactions to chemo (my oncologist says these go on for two years afterwards), or the aggresive menopause brought on by the surgery. It is frankly ridiculous to say that a woman who has not experienced the menopause before treatment can distiguish what are fierce menopause symptoms, or the considerable pain many of us get in recovery from chemo; from possible recurrence.

    Wishing you the very best for a future free from ov. ca.

    Isadora.

  • If CA125 is a good measure for you, then I think regular checks are a good idea. As the other ladies say, you have a good idea what is happening and you can prepare yourself and/or act on it.

    Love Lizzie

    X

  • I am in my second recurrence now and both recurrences were discovered following a rise in my CA125. I had no symptoms at all. I still have no symptoms but I know from my scans that I have a 5cm tumour near my left kidney and other smaller tumours.

    I personally would not want to wait until these start causing me pain before doing something to treat them. The main tumour has increased from 3cm to 5cm in a couple of months and my CA 125 has been going up in a similar fashion. I know it is a personal decision and that CA125 markers are not a good marker for all ovarian cancer patients but it has been for me.

    This is against the advice of my local oncologist. If he had his way he said he would prefer not to give patients their CA125 results and wait for symptoms. He and I disagree (amicably) on this point.

    Best wishes for a long and healthy remission for you.

    Sharon

  • Hi Sue.

    Congratulations on finishing the Chemo and i hope you enjoy a long long remission!

    I am in the same situation, in my last visit to the Oncologist,she told me that they are not going to treat till I have symptoms !although my latest Ct scan showed a recurrence! Apparantly,according to professor Rustin research, giviving women early treatment doesn't prolong their lives,more than women with delayed treatment !!!!their aim now,is to give women a better quality of life,and to avoid having unnecessary side effects for as long as they live! And the other benefit is reducing the problem of becoming resistant to chemo!

    Now I am on Letrozole for few months to see if it can control the growth, as my OC is low grade,it means it is slow growing!

    Up till now I am trying to be ok about it,but when I start feeling anxious I will contact her again.

    I don't know if what I wrote is of any help for any of youth ,but please let me know your opinion!

    I wish you all a Happy Easter and a happy healthy lives.

    Raza.

  • Hi Raza,

    Thanks for this. I found it very useful.

    I have read the summary now of the Rustin research on the National Cancer Institute website, and it's given me a different perspective. I think I would rather be well for as long as I can rather than spend any time I have going backwards and forwards for chemo and feeling unwell because of it, if it isn't going to prolong my life. Of course, whether I will still feel this way when it comes down to it is another thing!

    Lots to think about.

    Many thanks

    Sue

    x

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