Intense Fear of Recurrence

Hi ladies. So, I'm about 5 weeks post treatment and my anxiety seems to be getting worse. I've been seeing a therapist for a few weeks now which helps for a few hours because I cry my heart out to her the entire time and its the only time I can cry. I wake in the morning and it takes over my entire body. I've also seen a psychiatrist who prescribed me Lexapro and I still have to pick it up from the pharmacy. I dont know what to do. I cant shake the fear. Reading of others recurrences sends me over the edge and all I can think about is the chance I cpuld leave my kids. I worry that its a premonition of whats to come. My Drs optimism seems to be lost on me. Has anyone else felt this way and make it to their "all clear" at 5 years? Help. 

I’m sorry you feel like this but that cheesy saying that you ruin today by worrying about tomorrow is true. I know it’s easier said than done but you need to start enjoying every day you have with your children. 

I have terminal cancer but there is no way I am going to sit around crying about it when I could be out having a great time with my kids. Don’t get me wrong it is heartbreaking and I hate the thought of leaving them and have done an awful lot to try and make their lives easier if I do die but I don’t want them remembering me as someone who was miserable. I want them to remember good times and know how much I love them. 

 

I dont want to belittle your anxiety problems but I really feel like you should be enjoying your children. You do not have a terminal diagnosis and there is no reason why you should get one. There are a lot of survivors of this disease and there is no reason you can’t be one. 

 

Good luck x 

Hi Jens :-) 

Really, I do know what it's like. I used to be terrified to the point that I would have black spots appear before my eyes but I felt that I needed to be brave in front of everyone else. Where I was living at the time of my treatment there was no chance of any counselling at all, so eventually I left my home for three months and got some really good counselling at the far end of Europe (I am from Britain but was living in Greece at the time).

Here I am, six years on, absolutely as fit as a fiddle but with my marriage completely in tatters. There is no such thing as "premonition". Life chucks a random bunch of experiences at you and it's up to you whether you hit them beyond the boundary or let yourself get caught out. I am not for a single moment here suggesting that a positive attitude will counteract a terminal diagnosis, which is the kind of thing that some quacks like to suggest. What I am saying, which is very similar to what Susan has already said, is that enjoying each day as it is is a far better way to live than to waste your life worrying about tomorrow.

So, I beat cancer but I lost my idyllic Greek home. Now I have a new and unexpected life and all I can tell you is that it's exciting. It's an attitude and you won't get that from a packet of pills.

Be lucky :-)
Tivoli 

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Ive been given a 90%+ chance of cure by my radiation oncologist for stage 1b2, but I read of so many ladies that were my stage and earlier that had a recurrence. It makes my odds seem more like 50/50. I'm trying so hard to see all the positive. I really am. But every time I look for positive stories, I find 10 sad ones. Im due for my first post treatment PET scan soon so thats not helping, especially since I'm feeling random new pains. I just feel so sick at the thought of it coming back and not being here. I dont mean to whine. Im just having one of those weeks. I wonder if it was in my lymphnodes microscopically, if that means it is more likely to come back? I never had them biopsied as I went straight to treatment but they appeared normal on MRI and CT. I hate that I feel like I cant look to the future. I just hope it gets better with time. 

Trust the statistics!-They are based on thousands of women averaged out. Anecdotal stories here and there can't compete with the overall picture.  We can all find stories of early cancers that progress (which you focus on ) and advanced cancers that survive (which you ignore).  Your chances are in excess of 90 per cent. Many of those that do have recurrences  may have other underlying conditions as well. The best way to be in the more than 90 per cent is to keep your body and mind healthy and  to do that you need to stop fretting about things that are very unlikely to happen. The others have all given fabulous advice. Enjoy your children and your personal interests and just let it go. Even if it comes back it's far from the end of the line anyway. There are further treatments to have. Recurrence doesn't mean terminal. The future is bright, enjoy it.

Thank you all for your words. I'm working hard to move past this. I suppose I'm still in shock that I had a life threatening illness and need to get over the feeling of waiting for the other shoe to drop. 

Hello jen, i really sympathise with you. After I was diagnosed and treated I developed a debilitating fear of recurrence and cancer in general. I think having young children made me alot worse as I was so scared of leaving them. I'd check the Internet for positive stories but then of course read bad ones and would plunge into a horrible anxiety and panic, was regularly at the doctors seeking reassurance, self checking etc. In the end I did have councelling which I think helped a bit and also took anxiety medication which definetly took the edge off. I think the shock of being diagnosed with cancer is just massive but I think just listen to what the doctors say, 90% are great odds. I also tried to be healthy with eating, yoga etc as made me feel I was doing something to help. Just to add my step mum had breast cancer 10 years ago, aggressive and was in her lymph nodes, she had masectomy, chemo and radio and she's still here no problems since so the treatments do work. I think it just takes time for you to feel safe again but it does get easier as time goes on, just try and keep busy, be around people to distract yourself, I shut myself away and it made me so much worse but getting back to work, having friends over helped me to feel normal again xxxx

I think every one of us on this forum knows exactly how you are feeling. Thing is, people don't tend to post positive stories, they only post when they need support so you'll not find too many positive stories. I think most people who are in remission just want to walk away from the c word and forget it ever happened. I do if I'm honest but I know how I felt just under 3 years ago and I needed to speak to people who had 'been there, done that'. On my treatment plan it said stage 4a 'curable'. It took me a long time to focus on that word, and if I'm honest I have times when I struggle but, as someone else said, why ruin today.

Its easier said than done I know but you'll get there. You've been through a rough time physically and your body is healing. You've been through a rougher time mentally and that takes time too heal soon. I daresay you'll be thinking about your scan and follow up appointment which is really stressful and I don't think anyone can say anything to ease that for you unfortunately.

I'm a huge believer in walking as a remedy, fresh air and exercise - you can walk your problems away (to a degree anyway).

Keep posting on here wjen you need and hopefully we'll be able to help xxx

I'm at the stage where every ache and pain freaks me out. I sometimes feel like its hard to breathe and envision it coming back in my lungs. Before my diagnosis, I had major health anxiety so this is literally my worst nightmare come true. I just need to beleive that recurrence is rare. At least I hope it is. I just want to be ok and feel safe again. 

im about 8 weeks post treatment and feel the same. I’m anxious most of the time, feel scared and worried and am already worried about recurrencow when I don’t even know if it’s away yet. My scan is end of October. 

My mental health has really been affected as before I feel I was a strong person but now I feel low and anxious. i know how you feel. I get counselling through cancer support Scotland. It does help talking but I just want it to go away. 

Even if you didn't have health anxiety issues, this isn't the greatest place to be. I think it's every person's worst nightmare BUT think to yourself - was the treatment as bad as it was going to be? Are you waking up every morning and able to function?

If you can handle this, you'd worst nightmare, then you can get through most things.

The fear doesn't 100% go away but it becomes mind over matter. I found that anxiety was given me different symptoms. I had a lump in my throat which I was convinced was cancer related, camera's to look showed it wasn't, I was given tablets and it went. I fractured my finger playing rounders, when I had my xray and the nurse said there was a lump on the xray I freaked out, turned out the lump was her way of describing the image  of the fracture on the xray. I have recently had a tear in my retina and have to admit to googling to see if its cancer related - can't find any links and it's just one of those things.

I'm also resigned to the fact that there's nothing I can do to prevent a recurrence but I can choose to live my life without fear. I try to live healthily, have a positive attitude and be kind.

I also know that if it does come back, there are treatment options but I'm trying not to think like that x

I'm  deeply greiving my old self. Its hard to think of myself as "normal" anymore. I envy my friends, wishing I was still my carefree self who worried alot but realized it was all in my head. Now, its something more. I appreciate you all more than you know. Thank you for listening. 

I can completely relate to everything you're saying, I was the same. I'd been prone to healthy anxiety before but always being able to tell myself it was all in my head but now my worst fear had come true. I would replay being called into that room and the doctor telling me it was cancer and it would just floor me that it happened to me. I also just wanted to be normal and carefree like friends and I was quite young I think 32 so I kept thinking how unfair it was and it makes you feel so vulnerable and out of control. Your experience is still very recent and with a scan coming up it's going to make your anxiety worse but as I've read on here before, listen to what your doctor says, not what they don't say. So if they say you've responded brilliantly to treatment and they give you a 90% chance of cure then that's fantastic and hold on to that. I remember when I was diagnosed my mums friend who is a GP said, 'well if you're going to get cancer, cervical is one of the best ones to get', as in its very successfully treated, so I tell myself if they say 1in3 (or even 1in2 now) of us will get cancer now, at least I got one of the more treatable ones and that's hopefully it now. It also made me more careful with my health, I was smoking occasionally, that stopped and I eat better so I've had a scare and made changes and that will help my long term health. My therapist put a complete ban on Internet searches relating to cancer as it really doesn't help, you go looking for reassurance but will always find the bad ones and like others have said, the cured people just move on and put it behind them but people tend write more when things go wrong. It's so hard and I think it just takes time but you mustn't let it ruin your everyday, if you're feeling well get yourself out there, surround yourself with things you enjoy. Treat yourself to whatever you enjoy. It helped me being back at work as apart from my manager and one close friend nobody knew so I'd have distraction and conversation about normal things. And as for thinking every ache and pain was cancer, I did that too and it never was. My weight also plummeted which I convinced myself was because of cancer, the gp was seeing me once a week to monitor it and said it was because I was in such a high state of anxiety, I couldn't eat and would gag at nothing because the anxiety was so bad. But once I had the first clear check up and stopping the Internet searches I started to relax (a bit) and my weight crept back up xxx