looking back

Hi everyone,

I have been having that terrible feeling why didn't I know about O.C before I ever got it which was last year March 2011, I keep thinking I could have been a stage 1 and trying to figure it out which month I should have gone to the doctors, instead of a stage 3c, I feel that I could have gone and had a C125 that year and it would have flaged it up early, that is how I was dignosed in March last year my C125 was over 10.000 thankfully it is now only 19, I just think if you are a stage 1 you are less likely too have a recurrence and less residuals, and get past 5 years, I think that I was always going to get O.C that I except, my husbund say's you have too let it go and stop beating yourself up about it, hindsight is a wonderful think, for what ever reason you just dont read about O.C like you do about breast cancer!! I'm not sure if my doctor would have given me a C125 without symptoms, when ever you read about O.C and recurrence it just terrifies me, if I talk to my oncologist about this he will just say "get that one out of your head" I know that is a lot more they can do for you today but I'm not so sure.

sarah P.

5 Replies

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  • Hi Sarah, Yes hindsight is a wonderful thing. Like you I knew nothing about ovarian cancer until I was diagnosed. I had had vague symptons for months and chose to ignore them as I did not feel in any way unwell and I had a busy life. After diagnosis, I spent months being angry with myself for not going to the doctor sooner. Please don't make the same mistake. There is nothing you can do about the past. It is not easy, I know, but try to look to the future and enjoy each day. Despite having to have a number of further treatments, I have survived 15 years so far. I sincerely hope your cancer never returns, but if it does, there is still hope of further remissions. My very best wishes to you, Sue.

  • Hi Sarah,

    First thing I said to my husband when I found out is we are not doing 'what if's'. We are where we are. We must focus our engery on getting better which includes positive thinking, doing what we are told by the medics, and doing what we can for ourselves e.g. exercise. Also learning from the ladies on here that a re-occurrence isn't the end of the line and believe that we too can be survivors and in the percentage which make it past 5 years.

    Easy things to say, but I do open that 'what if' box sometimes and look into it, but quickly slam the lid. The one I find harder to pull myself out of all those people who look older and unhealthier than me but don't have cancer, and feeling at 45 I have been very unlucky. That one does not help either and just makes you feel guilty for having those thoughts lol.

    Onwards and upwards for all of us :-)

    Love Lizzie

    X

  • Hi Sarah,

    Good advice here from two women who are doing really well. My mantra is always "right here, right now, I'm doing fine" It's a powerful thought to live in the present. It's all we have any control over, after all. I'm not sure going earlier would have made any difference. I had felt unwell for about 3 years and kept going back to my GP. I even saw TATT on my notes once, which I believe is an acronym for tired all the time (ie timewaster!). I kept getting fobbed off with anaemia, menopause, endometriosis, bowel problems,migraine, stress from my job etc etc. I KNEW I wasn't right though. Eventually I was scanned (for fibroids) and then CA125 tested (545), and was in for the full works within five days. My point is, I only had borderline tumours in both ovaries and the omentum, even with all those delays, so I don't think the type of tumour you have is always necessarily linked to the time it takes to get diagnosed. I was really surprised to learn that there are around 60 different types of OC tumours. I became a ROCC so that I can work at raising awareness of the signs and symptoms, for example, distributing the BEAT cards (free from Ovacome) at my local hairdressers and beauty salons, and telling everyone I can about the symptoms. I'm a real bore about it! I also share all the details of Ovacome and the Eve Appeal info on my facebook page. It all helps! I hope.

    Keep thinking positive thoughts, after all, right here, right now, you are doing fine :-)

    Love Wendy xx

  • Sarah I sometimes have similar thoughts I think I became conscious that something wasn't quite right about 6 months before I went to see my GP. I was really struggling with my running, my pace dropped and I felt fatigued then I suffered with depression but my symptoms were too vague and could always be explained by something else.

    When I did eventually go and see my GP I was fortunate that at the time there was an awareness campaign about ovarian cancer. There were lots of posters on the wall about the three most common symptoms and I had all three so my GP ran some urgent blood tests and after that everything seemed to happen very quicky although my diagnostic journey has had its frustrations.

    I think the advice about not concentrating on the 'what if' and focusing on recovery is excellent but I think its normal to have down days. I sometimes can't help feeling sad about all the things I've given up since my diagnosis.

  • I'm going through asking myself al lot of "What if's". I know it's not helpful but I can't seem to help it. I was diagnosed 1c borderline last year and yet am now faced with a reoccurence already presenting as 3c disease. My big what if is "What if I had chemo last year?" as it seems now prehaps my tumor wasn''t borderline after all. Also I might not have lost my third daughter to a stillbirth if my original tumor had been diagnosed properly while pregnant last year.

    I didn't know about OC either and especially that someone my age could get it. After it all happened I say a posted on my GP's wall none of it even registered before...

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