What's your secret

Hi everyone

Have had all my chemo taxol/carbo Surgery now on avastin every three weeks as on icon 8B trial until November.

Had scan on 29th Feb all good news no visible sign of cancer. Felt great to have such good news. Then saw my oncologist who was very pleased with results, but said you do know that it will come back😥 Since then can't seem to feel positive, and every pain I just feel it must be the cancer returning, had another scan July 5th still all ok.

Reading other posts I just don't know how everyone feels so positive. Tell me ladies how do you do it, what's your secret 😇

Best wishes to all Maggie

27 Replies

  • I would be devastated to hear that news no one has told me that but I have read it in here. Hoe can they be do sure it will come back??

  • HI Shellygirl, dont be fretting. We hope it does not come back, there is always hope and consultants tell us everyone is different so there are no hard and fast rules. Focus on living your life and enjoying it now.

  • I guess that is what we have to do. It does not sit well thinking oc will recur best not to think that it will and just live for now. I used to love my job but over the years it has become a chore. I now have the dilemma to return to work go part time or retire but im only 52 years young lol. I have to weigh up the quality of life I want. I have missed the social side of work while I'm off sick but I have not missed the school yard drama. If it dies indeed recur I don't want to think I have wasted my time.

  • I was in your situation 2years ago and unfortunately mine has recurred. I did go back to school part time, I don't regret it as there's no point but if I could turn the clock back I would have retired as I now have after 2nd line of treatment and huge op. I am also 52 and all I can say from my experience is that whilst I am currently well again and have the energy I am spending my time doing all the stuff I have put off over the years and with my friends and family. None of us know for sure what the future holds , not even Oncologists!! I still keep up with school gossip/buddies and I do miss the Staffroom banter but I am enjoying this time with my children ( 18 and 22) when I am not permanently exhausted. Good Luck xxx

  • Reality is that there is a possibility it may return, but nobody knows when or if that is the case, so just like u didn't know you were going to get it in the first place you just have to carry on until anything does happen. No point in worrying about something that might happen.

    All that said I am due my last chemo in three weeks and although it is hopeful I will be NED it does cross my mind when it will return.

    I suppose it's not under our control either so if it happens we will just have to deal with it.

    Not sure Iv made that sound more positive, wish I could say it will never return, but hey u just might be lucky. Fingers crossed for all.

    Mandy, xx

  • Hi Mandy just wanted to wish you good luck that you're NED when you have your next scan

    All the best maggie

  • Thanks Maggie, in keeping my fingers crossed, xx

  • Hi Maggie

    I suspect that everyone has good days and bad days. I have noticed that this week I've been more prone to worrying.. I was diagnosed a year ago this week with stage 4. I am lucky to be here but, like you I would prefer it if I could say with some certainty 'it won't come back' but the reality is that it often does.

    Living life one day at a time helps when I start to get scared and then other times I just forget that it is an issue. All part of my new reality... All the best to you, sounds like you've done really well xx Lyndall

  • Hi Lyndall

    Thank you, I hope that you are doing well and enjoying the sunny weather. Yes trying to live one day at a time is the answer, as even without having cancer none of us knows how long we have.

    Take care Maggie x

  • I did well on the treatment and got to 'no visible disease' but my onc was rather like yours - she also said to me 'it will come back'. so I couldn't totally rejoice. I do wish she'd said 'it might come back', as I'd been trying so hard with the positive thinking. For me there's a lot in the choice of words and language, both the words you yourself choose when talking about it, and the words oncologists use when talking to us. I try to eliminate the negative vocabulary if I can and do as much as I can to have treats, exercise, get out into nature, eat the right foods, exercise mindfulness, practise relaxation techniques (Penny Brohn UK's course 'Living with the impact of cancer' was very helpful in addressing all these things - see their website). I do have meltdowns, and dark days and fears, but you work through them and they pass and something pleasurable happens again. I see a lot of friends and family and enjoy all the moments with them. But I'm still learning how to deal with it all, and I don't think I'll ever stop learning! Don't be hard on yourself, take each day as it comes - and good luck.

  • Hi harpist thank you so much for your reply, you are so right if my oncologist had said that it might instead of it will come back, it would of made a big difference. Of course we all know deep down, most cancers can occur again, it's just the flippant way it was said, when we've all been through so much already and are not feeling physically or mentally at our strongest.

    Good luck Maggie 😊

  • Yes, when you've got to the end of a race you don't want to know you might have to do it all again - that's the tough bit. We want the finishing medal, don't we? We have to learn to be optimistic while being realistic, I think. I was encouraged by Kelly Turner's book 'Radical Remission: Surviving Cancer Against All Odds' which shows what you can do to keep the cancer away - there's a thread on this site about it if you do a search. A lot of the time switching off from hospitals and medical chat is good - and that's where the distractions come in! Go off and have a lovely day :)

  • I too have come to accept that I now have a new reality, a new normal if you like. In the very early acute days the possibility of dying seemed very close.and the cancer was all consuming.

    Having completed my treatment things have settled and that initial raw fear has subsided. I now feel I am living with a chronic illness that is part of me but not the most prominent part of me. As cancer has slipped into the background I have been able to become occupied with other things.

    The cancer still lurks in the background and occasionally comes out to bite me. I try to get maximum pleasure out of each day but that does not stop me falling out with the children and my husband! I have had to think about my own mortality but that has helped me be more selective about how I spend my time and with whom. This has made me less tolerant of bad behavior but also I am not so obsessed with wanting everyone to like me. Quite liberating really.

    It has also made me braver. Last week I had the offer of my brothers holiday home but my husband could not get the extra time off work. Therefore I came up on my own and had a wonderful time with our two daughters.Pre cancer I would not have been courageous enough to do this.

    I know things will have to change again as and when it comes back but I try not to let this spoil what I am doing now. After all anyone of us could be run over by a bus tomorrow !

    I have been lucky enough to have brilliant family, friends and my Clinical Psychologist. All have made a huge difference to my well being. It is impossible and unhealthy to be positive all the time. I have occasional meltdowns but they do pass.

    Time makes things easier and there is no right or wrong way to feel about what has happened to us. Stick with it and do not compare yourself with others. We are all different.

    All the very best

    Julia xxx

  • Love your response Julia xo

  • Thank you Julia, your reply has helped me realise that we can all cope with this. Great that you were able to go on holiday with your two daughters and have a wonderful time.🌞

    Best wishes Maggie x

  • Hi Maggie

    Well done on your treatment progress so far. When I was first diagnosed 2 years ago I was very traumatised to hear that the cancer could return. I couldn't get my head around a tumor returning in 3 months timescale. Plus I kept on hearing stories about recurrence from other patients in the chemo ward. Through the help of an oncology psychologist I realised that my preoccupation of a recurrence was impacting on all areas of my life. Especially my relationship with my young children. It has taken time but cancer is no longer 24/7 on my mind. I no longer go on a tangent when hearing stories related to cancer. No one can say your cancer will return, it may. Try to enjoy and continue to be positive as that's the best recipe ☺

  • Thanks for your reply, so pleased that you can now have days when you don't have the cancer on your mind 24/7 , that's what my aim is 😊 Best of luck maggie

  • Well I have read the replies and really, while the oncologists warn you it may return, they are words not facts as such. So carry on with the Avastin, I advise use Neil Med rinses to help any nose issues. The other ladies on this wonderful site have summed it up, you keep on keeping on. Tomorrow is never promised to anyone indeed. Live life to the full, laugh and sing. When you are tired rest, and also plan little treats or trips away, you can do this around the Avastin. I am currently stable have check up in a few weeks and maybe scan in October. I am not going to dwell on what that scan will show, guaranteed to be a bag of cats nearer the time though. My life at the moment is drug free apart from nsaids as I have a trapped nerve in my hip. I find this just as annoying as the Chemo as it restricts me. Sometimes I ground myself when I see someone in a wheelchair living with a childhood illness and I feel grateful for being where I am at that point. It is not easy, do see if there is a support group near you, or speak to the Macmillian Nurse in your hospital. Focus on distractions is my final advice, best wishes

  • Thanks Suzuki yes yours is the best attitude anyone can have. There are so many people worse of, and we are so lucky that they can do so much to help us. Good luck with your next scan maggie

  • Hi Maggie. My mum was told it will come back, it never did , not the ovarian cancer, I was told it will come back and shorten yr life well despite two recurrences im still here, nearly 9 years on , currently NED (3 years) and my dad, who had lung cancer at the age of 49 asked his oncologist how long he had to live, the dr turned and said how long do any of us have? Unfortunately the dr died two weeks later in an accident, my dad died three years ago just 12 days shy of his 82nd birthday so you see nothing is guaranteed, I could get hit by a bus tomorrow. I think thats how I stay positive. I wake up in the morning as I did today with my grandchildren wrecking my 'show home house' (my daughters words not mine lol) and think I could worry about tomorrow but I dont because whilst Im worrying about what might happen Im missing out on what is happening. I hope that makes sense. Take the day and make the most of it. Off to Paris Disneyland in two weeks with the beautiful grandchildren I never thought Id get to see, sod cancer you aint got me yet and you wont, not for a very long time, of that Im determined. I hope you find a way forward to enjoy the day. Love Kathy xx

  • Hi Kathy

    Thank you, have a great time in Disneyland Paris with your grandchildren, they brighten up any day with their zest for life. So pleased for you, your an inspiration of positive thinking 😊

    Love Maggie x

  • Hi Maggie

    I am on the same trial as you - about one month behind. I have also had clear scans and low CA125 results.

    I had breast cancer about 20 years ago. At that time a friend sent me a fantastic book full of the stories of women who had thrived after cancer, aĺl of whom had been told by their doctors that they would be dead well before they were interviewed for the book. Helped me to realise that doctors do not know everythinG. This little piece of knowledge in the back of my brain has helped me this time around.


  • Hi Susan

    Hope all goes good with you on this trial, I had my chemo weekly which was very tiring towards the end, so having the avastin every 3weeks is great now. That sounds like a good positive book to read, and must of helped.

    Take care maggie

  • Hello Maggie,

    Just been reading all the posts and totally agree with these wonderful ladies.

    We just don't know what's around the corner, so live for today and enjoy life.

    I saw my oncologist on Friday he told me that it more often than not comes back. He also said 5% don't get it back and live cancer free. He also went on to say if it does return it tends to come back in the lower body, and the treatment isn't as intrusive as the first round of chemo.

    We spoke about this in depth and he told me he had ladies still coming back to him that were first diognosed in 2000.

    So The way I cope with this is well if it returns it's treatable. I speak to a lady in clinic that has had it for 8 years and she's great just gets on with it and copes with the treatment. Her words "I'm still here" after 8 years.

    Take care and live your life xxxxx

  • Hi Ann

    Thank you, your oncologist sounds nice, and gave you some positive thoughts which helps us all I think, we do need to live for today, and be greatful for all the help they can give us.

    You take care as well, and have a lovely day Maggie xx

  • Hi Maggie.

    Lots of positive messages from our warriors. Brilliant

    I was diagnosed (total shock as no symptoms) on 20/10/15) I was at Stage 4 and what seemed then a "death sentence" if you googled it!!!! So, after initial shock I decided that I would go into battle and beat the b***ard.

    I won't go into any detail re chemo/surgery but here I am 9 months later and very much NED and on Avastin (but peed off with joint pains, but hey ho) with CA125 at 13. My wonderful surgeon has given me hope from the beginning and has even said that recovery is an option rather than just remission BUT she was totally honest when I asked about recurrence......80/20 chance of return, And so that's my mindset I.e. I'm in the 20% who will survive without recurrence. I live life to the full graciously (and sometimes naughtily with a few glasses of wine) and just keep the positive belief and say my mantra everyday that "I will remain cancer free"

    Of course I'd be lying if I didn't say that the dark thoughts do hit sometimes in the middle of the night, but I just keep my belief and say my mantra over and over until I drop off again!

    The old adage that the present is a gift, also reminds me to live in the moment rather than worrying about the future.

    Sending you best wishes


  • Hi Gilly

    Thanks for your reply, excellent news that you're NED keep up the good work, I'm sure the few glasses of wine help 🍸🍾 I know that since coming of the chemo and everything's tastes ok I enjoy a glass or two myself. Yes it is a total shock when you've been feeling ok, then get such devasting news, but at least op and chemo over with so hope Avastin can finish it off.

    Take care Maggie x

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