Recurrence :( any advice appreciated

Hello everyone. Some of you may recall that I was active on here a couple of years back. It is with a heavy heart that I return (although I'm grateful that I am able to return to somewhere). My mum was diagnosed with stage IIIc carcinosarcoma two and half a years ago. She has been in remission and doing wonderfully for over two years now, after her surgery in October 2013. Sadly her latest CA125 was elevated to 180, and following a PET/CT scan, we’ve now discovered that the cancer is back. I don’t quite understand the results as I’m trying to interpret them myself (we’re still in the process of booking appointments with oncologists) but there’s definitely a large FDG avid mass on the peritoneum, and possibly something on the spleen.

There was also something about increased FDG uptake by muscles around left shoulder. I have absolutely no idea what that means.

I realise that this is a little preemptive and perhaps I should wait until we actually speak to her oncologist, but I'm going crazy, and just need to air it out.

I refuse to do what I did last time, which is google things, because I ended up scaring myself and everyone around me for no reason at all. When she was first diagnosed, the ladies on here were so helpful. You all got me through the experience - and when I told my mum I'd spoken to incredibly strong women who had her exact same cancer, I could see immediately that it made a huge difference. So I think I just really need to hear stories of similar experiences, some advice from someone who's been through something similar and what you think the next best steps are. I do still read posts on here and am always incredibly overwhelmed and impressed by the ladies who've had cancer come back once, twice, three times, and they continue to fight and beat it. I just want to know that she can fight and beat this one. Recurrence doesn't necessarily mean it's the end right? We just keep fighting?

I personally feel completely numb. I don’t know what this means but it’s like my brain refuses to process it. All I can think is "it's okay, she'll fight and beat it" and it's like there's a wall in my brain beyond that. I can't get past that thought. I think we all knew we were likely to be back here again. I was just so hopeful that we wouldn't. I really didn't want us to be back here again. She was doing so well.

Sorry, I will end my rambling now. Thanks so much for reading. x

5 Replies

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  • Hi, I don't believe that recurrence means the end of the road having had 2 recurrences, one after 4.5 years, another after 18 months and currently in remission for nearly 28 months. I'm stage 3 and fighting all the way. I wish your mum all the very best. Having watched my mum go through ovarian cancer too I feel your pain. My mum went on for about 16 years with stage 3 and with no recurrences. Where there is life there is hope and fight. Kathy xxx

  • Thank you kathy. you sound like you're doing great and so incredibly brave and strong. Exactly what I needed to hear. So sorry about what life has served so far and I wish you all the best for the future. fingers crossed you've now seen the last of it. Xx

  • If this is your mum's first recurrence, I understand that you feel like this.

    I'm in the middle of my second recurrence, and my first one knocked my sideways.

    It was really only at that point that I mugged up on this horrible disease and realised that recurrence is the norm rather than the exception. And that we are faced with needing to live WITH it, rather than after it.

    This is hard to get our heads round as we are so caught up in the fantasy of medicine and treatment being something that cures.

    For OC, it does, but only in a minority of cases.

    But how it goes forward for us all is as individual and unpredictable as we all are.

    It is a lot to take in, both for you and for your mum. She's very lucky to have your support. You may want to ring the nurse led helpline at Ovacome. Certainly a better bet than Dr Google....

    Stay strong and fingers crossed for you both. xx

  • Agree with Mac 27 ..

    .I have " Recurred " five times and am Living with the pesky blighters ...and the anxiety that goes with it all .

    How lucky your mum is to have your support ; you have to be strong for her , cliche that may be .

    Treatment / Good health becomes a bit of a balancing act but it can be done as you know from Women on this site . There are no long term fixes but many survive for long,long ,periods .

    Look after yourself ...ask lots of questions and badger consultants if you dont understand what is being said . They are not gods , and dont have all the answers ; but they do want to help .

    Everything crossed .

  • Hello,

    I have carcinosarcoma , same as your mum and my first remission lasted 2 1/2 years. My cancer came back in feb this year and I had 11 lots of chemo, unfortunately altho things looked good at the end of treatment , my cancer has started to grow again.

    I've decided to wait before starting chemo as I feel well and have no symptoms, my Onc says that ideally there should be six months btwn courses of chemo so I'm going to try and stick it out for as long as I can altho it's very difficult pyschologically.

    Unfortunately our cancer is very rare and there are no trials at present however my Onc says there are things in the pipeline that should be coming out in the new year.

    Please feel free to message me if you would like to, us sarcoma girls need to stick together!!

    Best wishes

    Lisa x

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