Fears of recurrence

Hi,

I am 34 and it is now 18 months after my treatment - chemo and surgery for ovarian cancer. I am currently in a constant worry about recurrence so looking for anyone with similar feelings. My CA125 has been fine but I often get abdominal pain and sometimes shortness of breath - maybe due to anxiety.

Hoping to find others with a similar situation. My blog helped me a lot - secretblogtonoone.wordpress...

Maybe even there are other bloggers - I would love to connect and share.

Best wishes,

Helen xx

14 Replies

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  • Hi Helen, I would hope you have constant check up ie every few months with you gynae. I agree your symptoms could be all anxiety but it would be no harm to go and have a chat with your gp and let him take it from there if necessary. You should also be having ct scan at least once a year to make sure all is okay/ Best wishes

  • Hi, thanks for your reply. I have seen my onc. about it and GP but they couldn't detect anything worrying - I'm going to have to trust them! Hard not to worry though isn't it?!

    I haven't had a CT scan for over a year though so will bring that up maybe next time. Thanks.

    Best wishes, Helen x

  • Hi Helen

    I am in a similar position to you. Although I'm just 9 months out after successful treatment for stage 3c. My ca125 had increased from 8 last July to 18 last month .i for last month I'm getting twinges in lower right abdomen. Also bad nausea and bad back pain since last October. Had clear Ct in jan but finding it tough going mentally. Worst part is the feeling of wastefulness of worrying instead of enjoying remission. On plus side have two wonderful boys age 2 and 4 who keep me in the moment. Read your blog and think you are doing amazing . Hope you continue to enjoy remission for very long time

  • Wow I am comforted to hear someone with a similar situation. I had this amazing 6 months after chemo of elation at getting my life back but now I too have that wasteful worry feeling. I also have sons - 3 and 6 who are my whole world. I don't think I'll ever feel safe though now - not like before - do you know what I mean?

    I get back ache and stomach pain a lot. I hate the CA125 tests and the not knowing more though! Are they going to scan you again?

    My best way of coping is a mixture of blogging and of making plans - I try to think of something fun to do - to look forward to. I might need to make a list of things to distract me then I'm filling the remission time with positives not negatives.

    Thanks for replying and for reading my blog. Hope your boys aren't tiring you out too much. Best wishes Helen x

  • I'm nearly two years following my last chemo and still feel anxious about recurrence. It's taken me a lot longer than I thought it would to start even feeling normal. I still get tired far quicker than I used to and have had all sorts of pains and worries. I don't think anyone can prepare you for life post-cancer and how tough it is; so please be reassured that what you're feeling and experiencing is 'normal' xxx

  • Thank you, this makes me feel better; it seriously makes me happier to know I'm not the only one - very reassuring. I just keep thinking of all the things I can do now that I couldn't do easily on the chemo. I am now trying to appreciate it but it is hard sometimes to get over the trauma of it all isn't it?

    Best wishes, Helen xx

  • Hi Helen

    I am 43 with two young children 4 and 2 I had my first op this time last year followed by the full hysterectomy in June then Carboplatin six cycles til Christmas. Yes I kept my hair!

    Had follow up with Oncologist and was told blood count up but scan shows NED...worry is constant. My best friend had cancer 10 years ago and she says the thoughts of recurrence don't really go away you just learn to live with them.

    Having some counselling might help with the anxiety.

    I love your blog. I have similar veins, I have told doctors not to bother and send the professionals to get blood out more than once. I am a bitch of a patient!

    Hoping things improve soon

    Esther

    X

  • Thank you for reading my blog - it has kept me save at times when no one around me seems to understand. People on here are making me feel normal.

    I love that you demanded the professionals - nothing wrong with getting things done properly - bet they hate us though eh?

    Best wishes for no more chemo for us xxx

  • Hello just wanted to say, I know exactly what you mean about the feeling of wastefulness instead of enjoying every day, I think it is all part of this experience though and we should try not to be hard on ourselves for worrying. I am nearly 6 months post chemo so to get to 18 months sounds amazing! if only someone could say "that's it, you're fixed"

    but then even if they did, would we believe them?! if your Ca125 is fine that is a very good sign. My dr doesn't believe in routinely taking it, only if I have a worry about symptoms, but then it's worrying not knowing what it is as well!

    keeping busy seems to be the key and making plans however big or small. Also some counselling may help, if you haven't had any already, you can get referred through your GP or McMillan. But you probably know all that. Sometimes the only thing that helps is making contact with others who are going or have gone through the same and this site is invaluable for that.

    Best wishes

    Madeline x

  • It's been 4 months since my last surgery, never undergo chemo. But I am also scared that my OC will come back. I never get the chance to have a CA125 test as well, my doctor did not told me to do so and I have no idea why.

  • That might be a good sign but you could maybe ask for one if you get any symptoms.

    It seems we are all scared but that should help us feel strong - we are not the only ones and it is very normal. Best wishes, Helen x

  • My blog is grapefruitandwine.blogspot.co.uk I'm a year ahead of you and worry when I have a niggle, particularly now with my check up looming. Going to read your blog now lol

    LA

  • Hi girls

    So resssuring to hear others have similar emotions and anxiety. My fsmily has been great but feel

    They don't want to know about risk of recurrence right n.ow. As far as they are concerned I am

    In remission now and no need to worry . They are right technically of course! My dr admitted when pushed that henwoykd prefer my ca125 stayed low but doesn't want to scan yet in case misses something as too earky..my ca125 slowly rising from 8 to 18 and don't know last result but was under normal. He also pointed out I was 1800 at diagnosis so current rise may not be as significant. Would love to Hear of anyone with similar trend that is ok(I was diagnosed high grade serous stage 3c) 15 months ago ,,.am nine months post tx now.

    Thanks for any input.you are all an inspiration to me.

    Susan

  • Hi, I'm 37 and was in remission for 18 months when I said I wanted a ct scan, my ca125 was still normal but I just had a feeling, I was eventually proved right after an inconclusive ct and Mari, a pet scan finally showed where it was hiding! That was a year ago and as my cancer is low grade slow growing my treatment was to go onto tamoxifen, which seems to be getting everything in check. Fingers crossed that it continues as having a 5 year old I have no time for this again. I wish you well. Xx

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