Fear of recurrence

[winetimenow]

I'm wondering how people cope with fears of recurrence?
There are lots of things I can tell myself about monitoring and modern treatments and that I actually don't have the worst kind of cancer in terms of recurrence risk. But the thoughts that come up every time I get a knock back or am feeling down about it all are - that I can get through all this treatment and I'll be ok, but what if it comes back in 5/10/15 years and I leave my children still young and am not there for them as young adults.
I know this is all 'what if' and we could get knocked down by a bus tomorrow.

But what do people actually do to manage the unknown of all this?

It is hard, no doubt about it. Are you still going through treatment? I am nearly two years out from the end of my main treatment though still on many follow up drugs and my risk of recurrence is pretty high. I still get moments of panic and days or weeks when I convince myself that some little niggle is definitely liver mets or whatever and dark thoughts about leaving my DDs while they are teenagers/young adults. Practical things that help for me are trying to exercise and eat well and do as much as I can to reduce recurrence risk (you might like to join us on the Great Recovery threads). And I try to seize the day and live life to the full and avoid as much negativity and drama as possible. Cancer’s only positive is that it has helped me not to sweat the small stuff as much as I did before.

But really, for me, it’s just been about time. I still worry every day but it’s not so front of mind as it was. I have also tried to make peace with the idea of a shorter but fuller life and to accept that might be my lot.

I don’t know if that helps at all, but you are not alone in this, OP.

Thanks @dotty2
Yeah I'm still in the midst of treatment so maybe too early to find and join the recovery threads. Or maybe they would help me keep on keeping on

I'm grateful for you sharing with me x

I finished breast cancer treatment in January and I worry every day at some point about recurrence. I take Tamoxifen and if I don't take it at the right time of day or I forget to take a pill then I have a real panic about recurrence. It's not rational I know but these fears aren't. I am hoping that time will help because it seems to help with everything else - heartbreak, grief, whatever - we seem to get used to things with time and learn to live with them. I do allow myself to feel the panic and feel how my body changes and the emotions that build up and I think that helps - to just let it happen and then let it subside as well rather than trying to push it away.

I also remind myself that because I've had cancer, I'll have regular checkups and screening so that if there is a recurrence I would hope to be picked up quickly.

I'm 10 years on, I was 36 when I was diagnosed with TNBC in both breasts.
All I can say is that for me, it gets better but has never completely gone away. I no longer think every little niggle is recurrence.
The GP and breast clinic are very understanding though and always refer if I want them to.

My son has been in remission for 5 months and it still keeps me up at night, to be honest. I'm trying so hard to get back to 'normal' but it's like I keep waiting for the other foot to drop.

His outlook is incredibly good but it wouldn't be if he relapsed and that's what I can't stop thinking about.

I am 11 years out from stage 3 triple negative breast cancer.
Before I was sick I was wildly anxious, but since I finished treatment I have been able to keep the fear away nearly all the yhe time.
An ovarian cancer scare a couple of years ago nearly tore me apart, however. I got an ultrasound due to a bit of bleeding and there was a 3cm complex cyst. It turned out benign but I was waiting far too long to get the MRI and results and in the meantime lost about 6kg due to stress and resulting diarrhea, which only made me more certain it was a new cancer.
Only a madwoman (and my horrible ex) wouldn't be stressed at that, though.
And since the dust settled on that, I'm back to not worrying.
I find it easy to rationalise that I'm well now, and worrying won't protect me, and I'll enjoy being well more if I don't worry. I wish I was this logical when I was young.

Time helps. I’m nearly ten years on and the first year or two after diagnosis I was almost paralysed with fear of recurrence. I got therapy to help me manage the fear which did help. I realised that there was no point being better if I was going to spend the gift of time in a state of anxiety. So, it will pass, I promise. It’s early days for you.

For me the fear has definitely lessened over the years. It's been 9 years now for me since diagnosis. I rarely think about recurrence now. But the first 3 or 4 years were really hard mentally, in fact about 18 months after diagnosis I was in a very bad place and needed a lot of help with managing that.

It does get easier over time, but be really kind to yourself.

I'm 2 years on from a stage 3 diagnosis and still struggling with the fear of recurrence - although time is definitely helping.
When my treatment ended, I did a free online group course with this organisation https://cancersupportuk.org/cancer-coach/
Although I'm not really one for counselling or even talking much about my feelings, it did help me understand the fear and it was helpful to talk to others in the group who felt the same. I'd really recommend it.

I'm 13 years on from finishing treatment for breast cancer, I was 43 when diagnosed and my daughter was 4, I have never known fear like it. There isn't a day goes by when I don't think about it and every ache and pain causes me huge anxiety. I try not to let it dominate my life and on the whole it doesn't, but it's always with me.

I'm just approaching five years post breast cancer. I'm a lone parent (my ex husband abandoned and disappeared) and my AuDHD son is only 13 (I'm approaching 56). I do worry about it intermittently. I'm doing all I can to ensure I'm healthy. I don't dwell. I can't do a thing about it. What I do is avoid stress, try to avoid worrying about things I can't change, live our lives and make sure we enjoy everything. I don't think about it much until I'm due a mammo (which is imminent) and then it feels a bit more of an issue and I hope we've got another year without worrying. It's an absolute bastard but I try really hard to stop it overtaking my thoughts. You just have to live with it.

Unless you've been through cancer, you can't understand the terrible fear of recurrence. None of my friends seem to understand. If I mentioned it, they'd look at me with blank faces and say "Why would it come back?".
It does get better. I'm 11 years post cancer. The first few years were terrible, worrying about every ache and pain. Now I rarely think about it.
What helped me was the passage of time, following an anticancer diet (it helped me to feel in control) and mindfulness. Whenever you start to worry just focus on the moment. Think "Who knows what the future holds, but I'm here now and all is well" and just focus 100% on what's happening in that moment.
Wishing you a healthy future.

@SallyWD

Can I ask what things you don't eat?

It's more about what I do eat - many foods have anticancer properties such as turmeric, green tea, broccoli, certain types of mushrooms like shitake, but generally just having a diet rich in fruit and vegetables.
In terms of what to avoid, then any foods that cause inflammation in the body, as inflammation is linked to cancer and many other diseases. Foods that cause inflammation are sugar, refined white carbohydrates (white flour etc) and ultra processed foods.
It's also not only about what you eat but having an anti cancer lifestyle, so this includes the chemicals you use at home and the chemicals you expose your body to. I use more natural cleaning and beauty products.
This book is very good. It's based on scientific findings and was written by a doctor who had terminal brain cancer. He managed to extend his life by 18 years. It's full of easy to follow advice: amzn.eu/d/3CRnOnX

Turkey tail and birch polypor are worth researching. Turkey Tail is used as part of standard cancer treatment in Japan.

Lots to think about - I'm not sure I'm ready to give sugar though!!
Thank you all x

I agree with others that it is very early days for you so it’s very understandable you feel this way.
It will be five years for me this summer since diagnosis and the anxiety does lessen over time although it’s still lurking in the background but much reduced .
Cancer diagnosis is such a shock and it takes time to process it all, often years. I felt I couldn’t trust my body anymore and slowly I’m regaining that trust in myself , it really knocked my confidence .
What helps me is making a conscious effort to eat well and do some exercise most days.
I don’t go mad, 15 minutes of Yoga in the morning and a short daily walk.I eat fairly well but if I want a piece of cake I have one. I’m not that bothered about alcohol so only really drink on holiday or special occasions.
I downloaded the Calm app which I’ve found really useful and do something daily from it.
Luckily I’m at a time in my life where I can focus on my wellbeing having recently retired.
It’s easy as a mum to put your needs last but try as much as you can to prioritise your health and wellbeing too.My oncologist told me the best advise she could give me was to reduce my stress levels to as low as I could get them and I actively worked on doing that.
The whole experience changes you, I used to worry about everything and now I let it all go, I’ve also pretty much stopped watching the news , I focus on things that make me happy, the simple pleasures in life. I avoid spending time with negative people as much as possible but appreciate we all have different situations and that may be unrealistic for some.
It will get better as time goes by, it’s a process that ebbs and flows, some days you feel strong, other days not so much.I wish you well with your recovery.

@Lookingaftermyself I totally agree with stress. I know SO many people, including myself, who had a cancer diagnosis following long term relentless stress (in my case a very protracted high conflict divorce). I think it's something to do with cortisol and it was mentioned to me too. I actively avoid it now as I've got to the stage where I realise it just isn't worth it and there's always a solution. It's something everybody should be mindful of.

Yes, time does help. I lived in absolute terror for a couple of years but I'm 9 years out and now only really panic if I get a cough that lasts longer than expected or a breast lump that turns out to be scar tissue. When that happens, I go back to feeling exactly as scared as in those early days. It's like grief - the further you get from the event, the less often you are anguished but when the anguish comes, it is as bad as ever. But then it goes again.

You don't need to give up sugar. Maintain a healthy weight if you can, keep exercising and eat a balanced diet that includes cake and limits alcohol intake as much as possible.

Thank you for the lovely, helpful posts here! 🤗 I just went through an inexplicable bad/anxious mood the last few days, then realised it was the 7th anniversary of my treatment, and that this happens every year, doh... the body does indeed keep score...

Totally agree with the advice to live as well as you can, but not to the point where rigid adherence is just another stress! A little cake is fine, and exercise that you like can be a pleasure rather than an obligation... I chose to give up alcohol (and this has been an unexpected gift in so many ways), but cutting down will help too.

And remember to do something for your soul every day, and do it before the chores or it'll never get done... ring fence some time for yourself every day.

I can sometimes get angry or panicky about all the things I couldn't do if my life were curtailed; the antidote to this, for me, is mindfulness, being in the moment and appreciating daily, small joys and graces. 💖