Positive way forward

Found this site whilst doing my usual search for some hope. I was diagnosed with stage 3 oc in May. I had debulking surgery and removal of omentum in August after 3 chemos with the remaining 3 in October. My ca 125 was 1,100 at outset and steadily dropped to 165 at end of treatment in nov. But ct scan showed nodules on my diaphram after op but have reduced further following chemo. The first blood test after cessation of treatment has shot up to 700. Although my oncology nurse says it is not cause of concern I am still worried. Trying to do as much as possible with friends who are very supportive and want to get back to my very active life but the black moods creep in when alone and the dreams don't help. Definitely so much harder after treatment. I feel in limbo - searching for a positive outcome when so far I can't seem to find one. Anyone else out there who is further down the line.

16 Replies

  • Just to welcome you to the site....

    There are loads of women (and some men) with experience and wisdom to share on this site.

    Many are expert are living with the sort of uncertainty you talk about.

    We all recognise the sort of feeling when it's hard to keep your chin up as normal.

    All best wishes!

  • Thank you for the warm welcome. It looks like my coming across this site is proving to be a real help.

  • I see you have experience of charity fashion shows...... Have you seen the Ovacome magazine? ...... They're trying to recruit people for the show and your experience sounds right up their street!

  • No I haven't seen the ovacome magazine. The fashion shows I have organised have only been on a very small scale in my local art centre with a maximum of 60 people in attendance. I live in a small village and liaised with a local fashion boutique. Persuading friends to model and bake cakes and donate raffle prizes. So it was all done very low key

  • ovacome.org.uk/media/55991/...

    see the link for the magazine.

    It's on page 11 and I hope you enjoy the rest of the magazine.....x

  • Good informative read.

  • Hi taichi pat - do you do tai chi by the way? I love it and it certainly helps my mental health.

    I do feel for you and know what you mean by the feeling of being in limbo when treatment finishes. I longed for it to be over and then felt really anxious when it did.

    I was diagnosed with stage2/3 oc in july 2004 and have had the operation and 5 lots of chemo plus one radiotherapy treatment over the years and still it keeps coming back but I have been well and able to live a very happy and full life between treatments, but always get anxious when I've got rising CA125 and scan results (getting some this week as well). Its not possible to stay positive all the time and i think its important to acknowledge your feelings and then try to let them pass by, talk to people who can listen and understand, macmillan, cancer care centres, good friends and I find lots of useful distractions like tai chi, yoga and voluntary work at my local donkey sanctuary and will macmillan to help me through the harder times. I don't know if there will be a positive outcome for you or me but I really don't want cancer to take over my life when I feel well even if the cancer is still present. I hope you can find the support you need and enjoy life while you can.

    all the best


  • Hi Francesca thank you for your support. No I don't do Taichi - it's a nickname I have acquired. I was really physically active before this cancer struck me down. I did badminton 3 times a wk, aerobics, yoga and loved my Zumba class. I painted and hung and organised exhibitions at my painting class and locally. Organised charity fashion shows and helping out at wrvs luncheon club. All these activities had been curtailed but slowly getting back to a different life. Swimming, walking and now yoga every morn. I don't expect to get back to where I was but who knows. I have a wide circle of friends from theses groups who are wonderful. But I feel I need to talk to people now who are going or have been in same situation. I only finished treatment in nov ca 125 now 700. My oncology nurse said to stay positive and active but symptoms are happening. I am panicking as she is on holiday next week and my appointment 16th February.

  • Wow! you certainly were active and sound like you're doing really well after treatment. I really understand you panicking as you have a month to wait for your appointment and your nurse is away. I expect I would too and might consider asking for an earlier appointment if getting symptoms as well. My experience has shown me that generally when CA125 rising and then scan results show disease growing my oncologist has been keen to delay more treatment for as long as I feel OK but sounds important for you to talk to your doctor or maybe the nurse at ovacome.

    Francesca x

  • Hi Francesca when I last saw my consultant in early January she said she would book a CT Scan for 3 months and I do know you are not treated on rising CA125 alone. I shall ring the nurse at ovacome on Monday. I was thinking of doing that.

  • Hi. I wish you all the best, and hope that my situation will encourage you. I was first diagnosed stage 3c in October 2012 and during the first 6 cycles of Chemo after all the surgery I always had in my mind getting back to normal after the treatment. However, there was still residual disease and I have never been in remission. The new normal is living with uncertainty and making the most of opportunities. Whilst I have now had 2 additional lines of different Chemo and some radiotherapy, I have also had a pretty fantastic couple of years doing things with friends and family and feeling extremely lucky to still be alive and well. I set myself loads of small goals and keep ticking them off. I obviously have periods of anxiety and do get down sometimes, but I find this site to be a great spurse of support and inspiration.


  • Hello Clare so good to get a reply so soon especially as I have been so worried as my oncology nurse is on holiday. I am unlucky that every time I am in a panic I ring her and she is on holiday and no one to help me as it's weekend. Your situation sounds very similar to mine. It's just that I am having symptoms now and only just finished treatment in nov. I do all the things you advise and find the less time I spend in the house brooding the better I am. Booked a break in london just before my consultant appointment to take my mind off things. Thanks again. This website is a real help I am so glad I stumbled across it.

  • I agree with all the advice you have got, you have to live each day as best you can, try and stay positive, maybe the macmillan nurse in your hospital or the ovacome nurse could help to allay your fears. A lot of us here suffer from fear as much as the cancer itself. You do seem to have the right idea to plan a trip before your appointment, something like that gives us the opportunity to focus on something nice and takes the focus from the Cancer and the worry, it is okay to think about it but then in your mind get a little box and tidy your fears into it and lock the box and move to something you like doing. Wishing you all the best

  • Hi and welcome to this forum. I too was diagnosed with Stage 3b in June 13. Following surgery and chemo, CT end Dec 13 showed remission. I was so pleased at that but within a month I felt really down! I couldn't understand it, I felt that I had beaten it and should be fighting fit and on top of the world!

    My GP explained that I had been through so much in the previous 6 months and really had no time to think about it or fully take in what was happening, and it was only when I stopped running back and forth to appointments that I was now taking it all in, hence how I was now feeling. She explained that it was almost a grieving process for my old self.

    This did pass eventually with the help of a tablet for anxiety.

    My cancer came back after 8 months in remission (August 14) but as yet, treatment has not started as I am feeling well and the tumours, 5 in all, are still small. I think of this as a positive. I know treatment will have to start at some point in the future and I will face it head on at that stage. Please don't expect too much from yourself too soon. Be kind to yourself, you deserve it. Ann xo

  • Thanks for that Ann, maybe thats how I feel too. As I had all these intentions of getting back to my hectic lifestyle and regime. But now wanting to change quite a lot of it and do different things. Just dont want to be indoors or solitary as keep thinking am I going to be grounded once more. Its only November since I stopped treatment and beginning to have a few syptoms which are worrying me - carrying on regardless. Yoga each morning, gentle swimming at moment.

  • As long as you feel up to it, great. I go to a Pilates class twice a week and hope to get back to the gym this week too as I haven't been since early Dec as had a cold that took me a while to get over and then came back with a vengence on NYE. Feeling much better today though thankfully. One day at a.time has become my mantra lol. All the best. Ann xo

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