fear of reoccurrence

Hi everyone, 

My names Kirstie, I'm 32 and been in remission from stage 2 colon cancer for 9 years. I guess I'm no different to any other cancer survivor as in I have a permanent deep down fear that my cancer will return.

I've had some symptoms lately which COULD be cervical cancer, although obviously could be lots of other things aswell. 

I've been to my GP today who's sent me for some urgent tests.. And although I'm trying to not panic and think the worse, its hard when you've been through it all before. My last diagnosis I stayed calm through all the symptoms assuming it would be anything but cancer, but I was proven wrong :(

I don't have anyone I can really talk to here, because the people close to me have so much stuff of their own to worry about, and I don't want to bother them as I could be and probably am worrying over nothing.

I just wondered if anyone here has experience of cervical cancer, and also if anyone can give me advice on how to stop worrying so much long term about cancer recurrence. Its been 9 years since my last diagnosis but sometimes it feels like it was yesterday.

Thanks for listening and sorry if I've rambled a bit... just feeling pretty alone and scared right now :(

Kirstie x

  • Hi hope ur okay I had a hysterectomy July this year due to cervical cancer and even though I had everything but my ovaries removed I am petrified it will come back,I haven't had any scans since so I'm worried what if they missed something from other discussions I have read this reaction is normal but it's still there I really hope it's something stupid and u don't have to go through cancer all again x
  • Hi Sam, thanks so much for your reply.

    I think you're right though I'm not sure this fear will ever go away... Its so hard not to think the worst when you have any kind of symptoms :(

    I hope you don't mind me asking but what were your symptoms? You don't have to say though if that's too personal a question.

    Kirstie x

  • Hi I'm only 25 until being diagnosed I didn't notice symptoms because after being cut when having my children after sex my cut was sore and there was a bit of blood but I thought that was just due to my cut as it would be very sore.But due to family history I asked 6 plus times for a smear since the age of 19 but was refused due to age first smear was abnormal had smear booked a few times but was cancelled due to nurse leaving and having to train a new nurse for a while I had felt rundown aswell x
  • Hi Kirsty, I have had cancer twice in the last 12 months. Salivary gland and cervical, they say unrelated but u feel hpv is the link. Anyhow, I had a lump with the salivary and had that removed and diagnosed before returning for a neck dissection. 6months after went for routine smear with no symptoms and the nightmare started again. Thankfully surgery got it early but my anxiety levels are high about every but if fatigue sore throat, short period etc etc I'm hoping this will improve. Has his improved with your remission period?from what I read this anxiety is v common but horrible nonetheless. If it helps you, I'm a mental health nurse and support and educate around anxiety management everyday and still struggle with my own anxiety!!i think talking helps a lot. Happy to talk if u need. Have you had your results yet? Also try to remember symptoms can be lots of things, many women have non cancerous concerns at times in their life x
  • I have just joined this group. I had an oesophagectomy and two field lymphadenectomy in December 2013. Because the margins were clear from primary tumour and the two lymph nodes that had shown cancer on Pet scan were clear following chemo, they tell me I have been given curative surgery. I do not have any scans, because if I have recurrence it will be classed as palliative. I will not receive treatment unless I become symptomatic. I have a 50/50 chance of it coming back, and the five year survival rate us 15%. It is very hard to keep putting the fear of recurrence to the back of your mind, but it is really important to try to live your life to the full, because you could be wasting time worrying about something that might never happen. I have met so many people who have had the same surgery as I have, and they are still going to the support group up to twelve years after their treatment has ended. I could be wrong, and don't know how aggressive your colon cancer was, but I personally would assume that if I had been clear for nine years, that if I was to develop cancer again it would not be related to the first one. I know that irregular bleeding between periods, or after sex could be a sign of cervical cancer, but that these symptoms could be caused by other benign reasons, so it is best to get it all checked out anyway, as they could just put your mind at rest. Never risk ignoring anything you are concerned about. I had precancerous cells many moons ago, and they burnt away the area they were concerned could become malignant, with a laser. I never had any symptoms, but it was found during screening by smear test. My more recent cancer had no relation to that one. I don't think that you will ever forget your diagnosis for cancer, and it is always a shock as no-one ever thinks it will happen to them. It knocks your confidence, that you aren't as bullet proof as you once thought. Please keep coming on here and sharing, as it us no good continually worrying and having no-one to talk to about it. A trouble shared is a trouble halved they say, and it definitely helps to talk about things. I hope you get good news, and you have a benign condition that is easily treated. Enjoy your life. Chris xxx
  • I couldn't agree more with Chris999  I have Acute Myeloid Leukaemia, a very aggressive form of blood cancer.  I had a stem cell transplant in 2012 which I am still recovering from. You don't ever forget your cancer diagnosis, it does knock your confidence.  One of the major problems in talking about this awful illness is the fear which the people who don't have cancer have for it. I have discovered that their fear is much harder to deal with than my own. You might need to talk about what has happened to you, but I have found that as soon as I open my mouth, people, including those closest to me, scurry away and change the subject. When they do this, our fears are magnified, but they aren't doing it for any other reason than they are deathly afraid of becoming ill themselves. I lost a best good friend to this fear. She still believes we are close friends, but I know by her actions that we are not. She will, every now and again about every six months, suggest we go out, whereas before we were in each other's company a lot, she used to pop over and visit for a coffee and never does that now. I know she feels guilty about it because she apologises that we don't get together enough. We don't, but that's not because I have drawn away, it's because she has.

    In the three months after my stem cell transplant, the only contact I had with people was with the hospital and my eldest son who shares the house with me. Nobody, not even my youngest son who had been such a support during my hospitalisation and treatment and his family, came to see me or even called me on the phone to ask how I was. I was in fact very ill with graft versus host disease and my eldest was at work. He has Aspergers so I couldn't talk to him about much.

    I think what it taught me was not to rely on those outside of this illness, I ended up coming on here and I found talking was such a relief because I was talking to people who understood my language. Instead of being told "Well you're in remission, you're cured, just forget about it and get on with your life" which I know I am not cured, I can relapse at any time, I met people who completely understood where I was coming from and what I was going through. With the help of people on this forum I have finally managed to get my fear of recurrence under control so that I can enjoy the time that has been given back to me.

    That's what we are here for, to let you understand that you are not alone. 

  • Hi Kirsty, and everyone. How are you? I had a radical hysterectomy for cervical cancer in June this year (I am 31 year old). I have a rare cancer causing disease which in the past has caused me to have a few other ops. I therefore always thought I had made my peace with the risk of cancer it was always something I expected to happen. I was perfectly calm throughout my diagnosis and treatment but the last few weeks I have been panicking. I am back at work I feel great and my partner surprised me by booking a holiday for next year. So why am I worrying about it returning? I was told that they think they got it all so everyone around me has just went great it's over put it behind you no need to talk about it anymore. Kirsty I am sorry you are going through this worry but thank you for sharing as it has showed me that no matter how long it's been or how much we have been through this is a normal reaction. I always said I was never going to live life from scan to scan. I hope we can all find our own way to get over our fears. Even writing this down has helped me.
  • Hi everyone, thanks so much for your replies. Its good to hear from people with the same thoughts cos sometimes being a cancer survivor is a lonely place to be!
    A quick update from me I've had some preliminary tests done, the results have come back clear which was a huge relief. I'm just waiting for a scan now which they say is precautionary due to my history. Fingers crossed that will be fine too and I can stop worrying.
    I have my annual colon cancer check coming up soon as well so fingers crossed for that too!
    Annese I think you hit the nail on the head, people can't always deal with cancer, mainly because of the fear they have of getting it themselves. I think more than anything else that's the one word you never want someone to say to you. Unfortunately there are too many of us who have lived / are still living that nightmare.
    I guess all we can do is appreciate the support of the people who do stick around, I think this forum is such a huge help to speak to people who actually understand how we feel.