PPC Help !

Sorry for being so long winded in my first 2 posts and thank you all for your most helpful ones. I learned a lot by reading through so many. I found a website which describes my exact feelings on diagnosis. The feeling of isolation when it dawns on you that not alone have you never heard of this disease yourself nobody you know has ever heard of it either. Being told to just think of it as OC as it has the same symptoms and treatment even though it is rare and as far as I am aware attacks the body in a different way. I never wanted this disease but call it what it is. Having said that the Ovarian community have been so welcoming that I feel less isolated.

I would really like to know how often after treatment following remission are women advised to get the CA125. I would be grateful for any replies on this. Thank you all again and have a great weekend

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  • Hi MollyO, I would imagine you have a follow up appointment for check up so you need to get the bloods done about a week before hand. You can go to your gp or ask your oncology nurse. Now from what I picked up at the information day, one doctor said that they have cut down on ca 125s as it only worried the patient more, I cannot say how that fills in with your own gynae onc. Because I am on Avastin, mine are done every three weeks but all I am told is that the bloods are good so I dont ask any questions. I think I am concious of the little time the onc has and go in and literally run out asap. Hope that helps, everyone is lovely on this site and perhaps someone else can give you a better answer

  • HI Suzuki

    Thanks for getting back to me. I am sure the CA125 will always be checked once you are on treatment as mine was. My real worry is how often on average it is checked when a woman is in remission. I think there is a huge variation on the time span between tests which depends on which country you live in and which oncologist is treating you. I would love to hear your thoughts on this as I never know whether to demand one or just shut up and listen to the experts. If there is a real answer to this I would love to know. Thanks again Suzuki.

  • Well prior to recurrence mine would alway be checked before I saw the gynae, I had the option to get it done in the hospital or my gp but opted mostly for gp. It probably depends on who you attend, although the doc two weeks ago suggested that they were cutting this down as women got more anxious, I would think if you ask your gp to include it in routine bloods, that he or she would oblige. I wonder is it because the test is more expensive and HSE cutbacks. Well you can ask for one if you feel you are more comfortable having it. I think now ca 125 is not as reliable as was thought, it is mainly used during treatment. I think if I was off treatment, personally I would look for test before seeing the onc or whoever and also look for ct scan every six months. But that is me. They do take into account if you are clinically well at check up time but then again, if you have read my posts and story, it was slightly different for me. I was in pain my 125s werent abnormal so ct scan wasnt deemed necessary. I was given a back x ray which showed degeneration and they decided that was the cause of the pain, My gp was rather perplexed as I was losing weight and unable to sleep so I was referred to rheumatologist . He ordered mri as I was very stiff and mri showed OC had come back. So then the hospital acted. That was a few years ago but the onc I have now is absolutely brilliant and takes good care of me.

  • Hi Suzuki. It sounds like you have been through the mill and I am so glad for you that that you have found an oncologist you trust. Mine has only seen me once and that was after diagnosis so he could authorise my chemo. It is always a different registrar accompanied by the oncology nurse who answers the questions. My gynae is a lovely person and one of the reasons I have stayed. I will be asking for a CA125 at my next appointment next month but as it has been 2012 since my last one I am now more anxious than they told me I would be if I had them regularly ! It is a vicious circle.

    Thank you so much Suzuki for the information and advice. Have a nice weekend

  • Hi Molly, my hospital do not do regular CA125 tests, they focus on symptoms, ie no symptoms they well alone. Not a bad idea saves worrying over a blood test but all hospitals have different protocols.

  • Thanks karazmataz. what a great name. Sorry for delay in acknowledgement but my broadband is giving me grief. It is good that you are happy with a wait and see approach . I was fairly cool for the first 2 years but my fourth anniversary from diagnosis is just coming up and when you are told in the beginning that this is a recurring disease then my coolness is slowly evaporating. I don't want to suddenly be told one day that it is back and possibly untreatable. Maybe I watched too many episodes of ER but I always thought that cancer patients were given all the options and then maybe even a choice based on medical advice given to them. Maybe George Clooney just clouded my brain ! Keep smiling

  • Hi all. My last post ended up lost in cyberspace so here goes again. Thanks to anyone who replied to me. As it is now 2 years 6 months since my last CA125 I think that now my anxiety is at an all time high. W

  • Some gremlin is kicking me off the site so please be patient while I make a third attempt. I will be asking for the CA125 next month at my appointment . Why did oncologists decide that it would make women anxious to have one done when for me not having it done raises my anxiety levels to an unbearable degree. Who are these people who think they can read my mind . Each woman is an individual who deserves to be listened to.

    I am sorry everyone for having a negative today. I have just spoken to a good

    friend who put me back on a positive track again. I wish everyone a happy day

    filled with blessings and good things happening however small

  • Hi MollyO, I have a port fitted and I am back on treatment now but before that when I had my port flushed every month I always asked for my CA125 marker to be taken. I know its not for everyone but for me it gave me peace of mind and let me think I had some control over my cancer. When I finish my chemo in July I will continue to get it done. Kittie

  • Hi Kittie. Thanks for sharing your own experience with me. It would appear everyone has a different story for various reasons. Maybe it is because of the different stages of the disease and treatment or even I suspect the varying opinions of oncologist in different countries.

  • Kittie. Last post went too soon. I just wanted to add that because they tell me I dont have new symptoms and scans were clear since my treatment in 2011 they are reluctant to do CA125. i am not sure where you are in treatment but I presume if you have a port then it will be checked. I was checked during treatment and a year after I finished but that was it. I do wish you all the best Kittie for a good outcome in July and keep smiling

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