Terrified of recurrence

I had my last chemo of carboplatin and Taxol yesterday. I was diagnosed with Stage1C2 in September 2016. At the beginning I felt very positive as I was fortunate to have a speedy early stage diagnosis and felt it was a cure and that would be the end of it. However as I have got closer to the end i have become more obsessed about recurrence as so many people seem to suffer with it.I just don't think I could cope with any more treatment, it just takes over your life. The oncologist was non committal which in a way I understand , she explained the odds and I really felt I was no less likely to have a recurrence just because I had an early diagnosis. I have my first CT scan on 14th February and oncologist on 8 May. I just don't feel I will able to move on from this dreadful disease and will always be looking over my shoulder

Lesley

17 Replies

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  • Hi Lesley

    I have felt a bit like you. Finished Carbo 2 weeks ago for stage 1c1. With scan in 4 weeks and results in March. I think I was positive all the way through treatment because something was actively happening, now it's my body's turn to play ball on it's own. That is what frightens me. However, I am now concentrating on getting fit and eating well to give my body the ammo it needs. I have decided this is my new "treatment" and by focusing on this it is helping to take my mind off negative thoughts.

    Sending you big hugs 🤗.

    Lynne 💞

  • Hi Lesley, this is such a scary time isn't it, for the last few weeks you've been actively fighting the cancer with the chemo and now that's stopped so you feel like nothing is happening now?

    You will be monitored on a regular basis so if you had a recurrence it would be found quickly and dealt with.

    I don't know if this will be any comfort to you but I was diagnosed 1c3 clear cell carcinoma in my left ovary in July 2014, full debulking surgery and carbo/taxol and now I have 6 monthly checkups. There are ladies on here who are much longer in remission than I am so not everybody recurs.

    Your oncologist can't give you definite answers as it is an unknown, everybody is different and our body and cancer are unique to us.

    Please try not to be obsessed with recurrences it may never happen. You have been given another chance to enjoy your life, do try to embrace it and move forward. If your feelings continue it could be a good idea to ask for some counselling to help you put things into perspective and help you through this time.

    Most importantly is to steer clear of the statistics on the good old interweb, some of the information on there is bogus and so very out of date so unhelpful plus you'll scare yourself silly as you can read so much into what's on there that really isn't relevant.

    There is so much support out there (and on here), speak to your CNS ask for some support.

    Take lots of care, sending big encouraging hugs and lots of love ❤xx Jane

  • Hello Lesley,

    Like you I was diagnosed with Stage 1C3 in September 2015 and like you when I finished Chemo in March 2016 wondered.....what next?? I made a conscious decision not to worry about recurrence its an active decision in that I have to remind myself on a regular basis not to think too much about it! Family and friends are great but they seem to think that because you are early stage that you are fine and its never going to recur.....we know that its not the case but as the other ladies have said we are all unique and not a statistic! I am like Lynne in that I have decided that my treatment now is exercise and healthy eating and that's how I feel I am in control of the situation! Its hard not to think about it but the way I see it is that Cancer has robbed me of so much in the last year or so its NOT GOING TO TAKE MY PEACE OF MIND! Its hard work remaining positive and getting on with it but its worth it!!!

    All the best!!!

    Dx

  • Hi Lesley, away from the hospital setting you do feel more insecure, but you will get there, You need to focus on nice things now, days out, even a walk, a visit to the Cinema. For most of us, these thoughts do happen but if they linger its best to try and find advice as to how to settle them again, Mindfulness is a good way. If there is a Macmillan centre near you go along and see what services they can offer you, counselling is good also light reflexology and more importantly a listener who is not a friend or family can also be beneficial, I know you have a long wait yet for the scan and oncology visit but you need to distract yourself in some way. Sometimes our minds are enemies rather than friends.

  • Hi Lesley

    Totally understand how you are feeling . Had a total melt down last night as was thinking about what to plan for my daughters 21st which isnt till Dec 2017. This morning saw your post which described exactly how I am feeling .

    Have needed all my energy and positivity to date to get through initial shock of diagnosis , chemo and radical surgery . Finished chemo and now on maintenance Avastin ( diagnosed June 2016 stage 4 high grade serous oc plus spread to peritinium )

    Feel lucky still to be here and physically improving everyday but even though I'm on Avastin and will have bloods every 6 weeks petrified of a reccurance. Not sure I can go through all this again although putting on a brave face for friends and family ! Looking well physically and didn't lose my hair as wore cold cap so everyone thinks I'm doing great !

    Have you asked for some counselling I have just asked for a referral and going to a support group soon so hopefully will help.

    As someone already said we need to stay strong mentally and positive and not let this horrendous disease take up any more of our precious lives. Nobody knows what their future holds and with help I want to make sure I make the most of everyday

    Stay well and strong Kim X

  • What cold cap did you use during chemo, if you don't mind me asking thanks purple iris, :)💕

  • Sorry didn't realise there are different types and don't know what it is called . Am being treated at Guys cancer centre London . Has to be on for hour before and after chemo . Did still thin and started to loose top by 4 th chemo but luckily am tall so wasn't noticeable and then had break for surgery and hair grew back . Will see if I can find out . Kim x

  • Just looked on MacMillan sight and think it is technically called a refrigerated cooling system as you are attached to a cooling system .

    First 20 mins the worst! Kim x

  • Thank you for checking, 💕

  • Hi Lesley

    A recurrence is something we all dread. I'm stage 3 and have had 2 recurrences but my mum was also stage 3 and had none so you can see a recurrence is not 'guaranteed' nor is it automatically the end of the road if you do have a recurrence, I'm now in my 10th year since diagnosis and currently on a trial drug. It may be worth seeking counselling to help you move forward, is that something you would consider as it may help? I do believe that as time passes you will move on. Kathy xx

  • Hi, I hope my story will give you some degree of comfort and hope . I was diagnosed with OC stage 1 in 2003 and for 12 years was absolutely fine I am not saying that I was, t worried about recurrence for the first couple of years because I was but slowly that anxiety reduced and I got on with my life and had a great time with family and friends lots of great holidays 6 weeks in South America, India, Nepal , New York The Caribbean to name a few. IT Was only in 2015 that I was diagnosed with Primary Peritoneal cancer I was told by the oncologist Not a reoccurrence OC and I have been in remission for 18 months and long may that continue. I count myself as incredible lucky and live my life adhering to the adage CaRpe Diem. So I send you good wishes and hope for the future .

  • Think everyone of us has the same feelings but life is about balance .... I think we have to find our new normal and push the worry to the back of our minds .... for me oc is the incentive to not put things off or wait for things to fall into my lap .... I had 1c1 clear cell in may 2016 and finished chemo in October .... I have had all clear and first 3month check my health has not returned to normal and I'm still suffering with sickness but I'm not letting the bugger rob me of a positive way forward .... cancer has changed me but I'm alive and as long as I remain that way I'm going to fight for my normal .... non of us know if it's going to be us that has a recurrence bin of knew we would have cancer in first place ... we can't change stuff by worrying I'm a born worrier 😂 But I'm not going to worry about oc .... I do still have meltdowns but in general I'm positive about the outcome of my oc journey 🤗🤗🤗

  • I was diagnosed stage 1c2 last July, had hysterectomy etc then 6 cycles of carbo only which I finished last week. CT on the 6th Feb and results on the 27th. Generally I am ok most of the time, then for no reason I have a mini panic, scared sick it hasn't gone away, worried it will come back. I get pulled up by my husband, he was diagnosed in Feb 2008 with stage 4 bowel cancer, spread to liver and lungs.........is now in his 6th year of remission! I just feel the need atm to want to pack everything in, meaning take some mini breaks, treat myself to something to cheer me up, stop dwelling on what might happen and just enjoy this day............which has been a good one. Stress I believe plays a major role in our cancer journey, so why help it along? In 1994 my son who was 14 walked into my garden and collapsed and died instantly, he had never been ill. That was the end of my world as I knew it, I live with that every day.........I cannot let cancer beat me, wear me down.........I am going to live my life for Matthew.........my "miracle" triplets and my rock, my husband who is living proof that no matter what stage we are diagnosed we can all live with it.....sorry.......I am rambling........thinking of Matthew. xx

  • I can really remember feeling similarly. I was dx 1c in 2012 and am very fortunate to be NED.

    I think it's really important to consider that for us all, there is a need for recovery / convalescence (even?) after the trauma of diagnosis and treatments. Often, it's when the treatments end that the full impact of it all hits.

    I found this writing by Dr Peter Harvey incredibly helpful and recommend it... cancercounselling.org.uk/Pe...

    Everyone is different and will find their own ingredients for recovery. In the first few weeks after chemo it was simple things like walking, seeing people and a short trip with my partner. Amongst other things, I really benefitted from meeting with an oncology psychologist and also spending a little time at Penny Brohn in Bristol and as time passed I found a balance that works for me.

    For just now though, I hope that you are able to be kind to yourself.

    Wishing you hope & strength, Sx

  • What an excellent article Sunfleury! Thank you for posting the link. At times, it's like he took the words right out of my mouth. I'm currently NED but must learn to live with the sword of Damacles hanging over my head. Also love the image of me piloting my little storm ravaged boat, some equipment damaged and all maps lost, working ragtag sails, peering out over a foggy sea, and wondering where the heck I'm headed, at least in this life. (Hubby and I are both sailors, well, back in those blissful unaware days when cancer was just a word.)

  • O it's my pleasure. It really helped me a great deal and over the years I've shared it often and know many have also found that it really spoke to how they felt... I think knowing that such feelings once treatment finishes (regardless of outcome) are common and understandable is incredibly important. I've also met onc psychologists at Maggie's who also feel it's a useful thing to share and so do with their 'living well' groups. I wish it were more readily available... Hope you find smoother waters ahead soon! Best wishes, Sx

  • Hi Lesley

    If you let it take over your life, it will. If you start getting back to normal and doing the things you did before, it won't. Worrying about a recurrence won't make one less likely, it will just make you miserable.

    Don't let it win!! Not everyone recurs, you read a lot about it here because those of us who do tend to stay on the forum but those who don't probably leave it or don't post much.

    You have got through the worst, now start living your life again!

    love, Lou xxxxxxxxxxxx

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