Hi everyone ! So I got the all clear a few months back but it’s on my mind all the time I’m trying to not think about it but I’m terrified of it coming back and last night something come up a woman who had had all the stuff I had done for the all clear then 3 years later was then told it was back and incurable 
so i burst into tears and now my mind is going back to the dark places it was when I was diagnosed, I just don’t understand how if we’ve kicked it out of our body how it just comes back sorry for the long rant I’m just trying to get on with my life and not worry about recurrence I have two small kids I worry so much about 
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I’m so sorry you are dealing with this. I just had my four year check up and it was fine, but over the past weekend I had a major UTI , never had that before and I completely spiraled downwards because of it.
I’ve decided to go back to counseling and see if there is something we can do about this deep fear that rises whenever I am triggered .
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Oh wow 4 years that’s great!
Oh I’m sorry to hear that yeah I can see why it triggered you I think we’re all worried and hopefully recurrence is rarer than cured forever, we are some strong people to deal with this and get through it so we just have to believe we’ll be ok I truly hope therapy helps you
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I’m not sure you ever fully lose the fear of recurrence…Mine recurred 9 months after treatment finished and I had got a NED result (no evidence of disease). None of my consultants have ever used words like “cured” or “cancer free”.
I was warned right from my first diagnosis that no evidence of disease is as much as they could say, as cancer cells can remain, even after treatment-I had chemoradiation-and they can be too small to be picked up on scans, so my mri didn’t show any disease and showed a complete response to treatment.
Mine recurred in exactly the same place as the original tumour, so there must have been some cells left. I had no symptoms that it was back so I was lucky it was caught at a check up and visual inspection. By the time I got another mri, it was big enough to be spotted on that.
But I don’t spend my life thinking about another recurrence as that’s no way to live. I prefer to get on with life and not stress about it. x
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It’s something I am thinking about and I’ve not even got my NED status yet. Don’t have my first scan until February 2024!
My Oncologist is very pragmatic and blunt. He explained whilst we treat to cure we are curing this occurrence of cancer. We don’t cure cancer because there is always the potential for my microscopic cancer cells remaining even after treatment. The best I’ll get is NED status for contracted periods of time between scans.
Truth time?
For every positive outcome I read about there are equal amounts of sad stories. Stories of women never getting NED status, NED status revoked after 9 months or even 6 years. I am not just talking about stage 3 and later. I am talking women staged at stage 1 and 2 as well.
My counselling had helped. For example
I don’t fear death from a reoccurrence taking me to stage 4 but rather but I have anxiety about dying. I don’t want my journey to death to be painful or lacking dignity as my independence has gone.
Going deeper I have sadness that I won’t be able to retire and grow old with my partner (sadness and grief) that the pension pot I have built up is pointless (anger) etc
Anyhow you get the picture…
It’s such ‘fear onion’ because once you ask yourself ‘why’ you find your emotions are not always about fear but rather sadness and grief.
All that said I am NOT letting cancer steal any more joy or take up any more space in my mind.
It’s taken so much from me since July that I refuse to spend time on it. I don’t want to have regrets not giving that space to happier activities!
Easier said than done mind you 
You are not alone
Peachy
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What an excellent post @Justpeachythanks! And we have, it seems similar attitudes to this disease. My recurrence did obviously take me technically to stage 4, but always just termed “recurrent cervical cancer”. However, I didn’t focus on a stage number-just “well, what is the next step? “
I too was determined not to let cancer take any more from me than it has done. Yes, it has changed my life due to my surgery, but I think “how lucky was I to be able to have that surgery”. I know plenty others who didn’t have that chance, so, while it changed my life totally it also saved it and for that I am hugely grateful.
Even after surgery when the pathology came in with results which could not have been better, the caveat was still there about microscopic cells etc. So it was “NED” again as being the most it was possible to say. I accept that and it’s fine.
You’re right in that it’s easier said than done, but we need to get on with living. Which in my case luckily included cashing in one of my pensions! I choose not to live my life in fear, but it’s hard for sure! x
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This thread has made me feel worse now if I’m honest 
I hope I never have to see the inside of those walls again I’m 35 with two young children I need to be here for many more years yet I’m just trying to get over the past year,
I hope your all ok and sending positive vibes your ways xx
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I’m sorry it’s made you feel worse but it’s the reality. All we can do is tell our own experiences, and that’s OUR reality. Not everyone has a positive experience. Ultimately my experience has been positive one because I’m still here. But I still had a recurrence.
Cancer can come back, and it would be an untruth to say that can’t happen. Talk of being “cured” and being “cancer free” is not necessarily the reality for a lot of us, but unfortunately if you post on a public forum you’re going to get the good and bad.
You can read the potential recurrence statistics online if you’re so inclined, and recurrences do happen, at any stage. It’s just life. We all hope we’ll have no recurrence, of course we do, but I know many women for whom that has happened. I’m sorry this has made you feel worse and hope you’ll never have to go through this. x
I am sorry if the thread has made you feel worse. Wasn’t my intention with my post. People deal with thought of reoccurrence differently and find their own ways of handling fears. I didn’t have much of a choice given how bluntly honest my oncologist was at the time!
If you’ve not had counselling I’d recommend it. It’s only after 6 months of sessions I have the mindset I do however I know everyone is different.
I wish I had a silver bullet to take away your fear, lovely. Sending you positive vibes and hugs.
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I am taking each day as a bonus now and living life like there is no tomorrow. I did to a degree anyhow when I lost my dad and partners mum within 6 months.
After that we didn’t put anything off but now? Now I wear my stupidity expensive perfume every day even around the house. I’ve just booked Smoke which is a restaurant I said we’d go to in the new year but I thought sod it we’ll go 30th December
I only go to this via counselling but I love my attitude now. Even changed my perspective on the ridiculously stressful promotion I was chasing before I got my cancer diagnosis.
Not to say I don’t have ‘down days’ but they are getting fewer and I stay away from my triggers.
Really good to hear you are living life 
and that there is life after reoccurrence.
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There is most definitely life after recurrence, but it’s a very different life in my case. But that’s ok-everyone has different ways of handling this. Stay way from triggers! X
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Ahw I’m sorry it has made you feel worse, that wasn’t the intention at all. I wish it were any different , for all the ladies living after a cancer diagnose , but the truth is I haven’t spoken to one single person who wasn’t afraid of a recurrence.
It’s sadly part of the cancer-deal. To mourn the loss of the life you had, but one day you will find yourself celebrating the life you have now. It just takes time ( and in my case 1,5 years of therapy and Emdr , highly recommended )
You will get there eventually but this cancer thing is part of your life. Just don’t make your life about cancer 
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https://cancersupportuk.org/cancercoach/
I don’t know if this would be any help for you ? I came across it while googling for a cancer/life coach type person who would get me out of my current low mood xx
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Dear Danik,
Hugs for you. All I can say is what I did for myself and I’ve been NED for almost 20 years.
- I choose to live - especially to spend time with my kids and animal companions
- I choose to live in the present moment and focus on life in the now
- I choose NOT to participate in any kind of benefit or fundraiser or anything of the sort that focuses on cancer because it is my belief the events give more energy to the disease (s).
- I chose not to go back for annual exams/scans after getting the NDE report because I am well.
- I choose to transfer the fear to the earth and source/God and surrender to the joy of life.
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I know it wasn’t your intention when creating this thread but I would like to thank you and the lovely ladies who have replied.
I was having a hard few days mostly because I’ve isolated my self from people for the last ten days , only because i know how low my white blood count is and the world is full of winter bugs blah blah.
I was very focused on feeling bad for my self and my pain, which has now gone and I know I only have one of the ( bad ) chemo left.
But to quote train spotting , I choose life 
.
No one knows what will happen tomorrow and I’m so happy that I have today and probably tomorrow!
I’ve always been a nervous person and ironically enough my main anxiety has been a health one.
I have booked me and the kids to Ice sake next week , I’ve always been scared to take them.
Please feel free to message me, a problem shared and all that xx
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Hi, I’m new here. Just had my 3 month post treatment PET scan. No evidence of cancer detected. I’m also scared of reoccurrence, but trying to stay optimistic. What is NED?
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NED is “no evidence of disease”. You’ve had a good result, so definitely try to stay optimistic!
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As a 90s baby you win this thread and I am loving the honesty and mindset x
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I just wanted to say that most ladies at stage 1 are cured. It is not fair to say there are equal amount of ladies that have recurrence than not. You are far more likely to hear from people who have a recurrence than those who do not as they are off living their lives and not coming back on here to tell their stories.
I was 1b3. Had chemorad and was told I had 80% chance of being cured. I’m happy with that.
Oh don’t get me wrong. I worry about recurrence every day and have overwhelming anxiety around it but beginning to accept this is how it’s going to be. Yes there are stories of it coming back but the odds are in your favour!
I was diagnosed June 2021. Still ok.
Hang onto hope xx
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