once only

Sarah

If your O.C comes back can it just come back the once instead of it becoming cronic? perhaps in the first 2-5 years and then never to return? or perhaphs after 5 years? only it seems that for the most part once you have had one episode you can get it again and again in short periods of time, I would like to think there is plenty of treatment to keep us going for a long time!

from Sarah.P

5 Replies

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  • Hi Sarah!

    When was your experience? I hope you are ok at the moment. I can only tell you about my own experience, and I have been ok since I had a complete hysterectomy and my omentum removed in 2002, I had ovarian cancer in both ovaries and the omentum and it was all removed. I have been well since then and still have a yearly CA125 just to check everything's still ok. It was classed as Borderline and I didn't need any chemo, so I was very lucky. There are a few of us out here!

    Good Luck!

    Wendy xx

  • Hi Wendy

    My experience is that I too had a hysterectomy and my omentum was removed, I had one tumour on it, my suptype is a clear cell so it can come back in the future, you are so lucky not to have had Chemo! I dont no if you have any imformation on clear cell? I hope and pray that it does not come back I have found having O.C very upsetting and I did not cope well when I was told I had it, you think of the worst first, but I think they do have more on offer when it comes to treatment hopefully, the future does worry me you would hope everytime that you needed it, it will work!!

    thanks again Wendy

    all the best to you!

  • Hi Sarah

    You have had a terrible shock as we all have and we are all at different stages of dealing with the diagnosis , treatment and the aftermath.

    Clear cell is just one subtype of Ovarian cancer and rare does not always mean worse, it just means there are not the statistics out there for us and , like another poster on here ( Isadora) says, there are lies damned lies and then there statistics! Remember there are NO statistics for us as we are all individuals! There are many clear cell women who have never recurred with the illness again and I have personally met several at the Ovacome annual meeting in May. I strongly recommend you come along next year.

    My clear cell diagnosis was devastating but we all have choices how to deal with this. I chose hope and I see that the sun still shines everyday and I am here to see and enjoy it.

    Keeping my career in gear and a full personal life has allowed me to put cancer in its place, I respect that I have it and I give it the time it deserves which is the time it takes for my tests or treatment and of course reading the comments on this site.

    The ladies in this site have provided me with food for thought, and great examples of how to manage this process with dignity and lots of humor.

    Having had the hysterectomy and 6 months of standard chemo I have been told I am in a "wait and see stage". I hope for long periods of time dancing with NED ( scan reports that say No Evidence of disease!) and that if it does recur there is something in the arsenal that allows me to continue with what I consider an acceptable quality of life....HOPE!

    I would definitely go for PERSONALISED chemotherapy if I needed treatment again ( which is a new way of testing tumours for an individual, there by giving a higher rate of success for the subsequent treatment.) Prof Martin Gore at the Royal Marsden has been quoted as saying" there is a need to individualise treatment for each woman because of the great variations in ovarian cancer. "Patients with ovarian cancer are a very heterogeneous population. This is not one disease with one behaviour,"

    I wish you all the very best but do not allow worry and prolonged thinking on this to ruin today!Live your life, keep on top of your physicians and let tomorrow be another day. Let us know how you get on.

    Lindy

  • Oh Sarah

    forgot to give you this website that will give you more information specifically for Clear cell. I found that ( for me ) with knowledge comes power with power comes back dignity and control

    Google Libbys H*O*P*E

    all best

    Lindy

  • Hi Sarah, as you say, they have so much more each year on offer to treat OC. I'm sure if you carry on being aware of signs and symptoms and checking with your hospital as soon as you have any worries, you will be OK, even if it does come back. I don't know anything about the different types of tumour, but the Ovacome site is full of info. I'm always aware it could come back, but try to put that thought in a tiny box in the corner at the back of my mind! I try to concentrate on the "right here, right now, I'm OK" philosophy I read about somewhere.

    Love, Wendy xx

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