Has my cancer really gone? Dealing with the fear of recurrence
The shock of that day you hear the words, “you have cancer” never leaves you and your sense of certainty in life and in your body can be hard to recapture after a diagnosis of cancer. One of the most common fears survivors report is the fear of their cancer returning. This fear can be most acute in the months following treatment as we wrestle with thoughts of rogue cancer cells hiding inside of us, just looking for the chance to plant themselves in some organ. This may in part be to the fact that we not told our cancer is cured, but rather it is in remission – the very word implies only a temporary cessation of activities.
Although we don’t want to face the possibility, we cannot hide our heads in the sand and pretend it will never happen to us. While we don’t want the fear to take over our lives, we still need to be vigilant – a local recurrence may still be curable, so early detection of a local recurrence is very important. You may find that educating yourself about all aspects of your disease, your personal risk of recurrence and the preventative measures you can take may help decrease your fear.
What is a cancer recurrence?
Breast cancer can recur at any time, but most recurrences occur in the first three to five years after initial treatment. If cancer returns, we call it a recurrence of the primary cancer. There are three types of cancer recurrence:
1. Local recurrence – the cancer reappears in the same place (or close by) as it was originally found, but hasn’t spread to the lymph nodes or other parts of the body.
2. Regional recurrence – the cancer recurs in the lymph nodes and tissue surrounding the original cancer.
3. Distant recurrence – when the cancer cells break away from the original tumour and spread (metastize) to areas farther away from the original cancer site. around the body .
Does fear of recurrence ever go away?
Fear of recurrence is a normal experience after a life-changing event like cancer and it is most acute in the immediate aftermath of treatment ending. Normally it fades as time passes and only rears its head again at times such as your annual medical check up, the anniversary of your diagnosis or treatment ending, or someone you know being diagnosed with breast cancer or a cancer recurrence.
What if the fear doesn’t go away?
For some people, the voice of fear cannot be quietened and if you find it starts to impact your life in ways that are not healthy for you, then I would recommend getting in touch with a mental health professional who can help you work through it. Support groups can also be a safe place to discuss and explore fear of recurrence. Sometimes talking about the fear can help decrease it.
How to know when an ache or pain is something to get checked out?
This is a common question from survivors and as a rule of thumb, I recommend the “two week rule.” If you have a symptom that is persistent and consistent over a period of two weeks (meaning the symptoms remain the same in intensity), then make an appointment for a visit to your oncologist or nurse specialist who will decide what tests need to be done. Obviously, if you have a pain which increases in intensity, the two week rule does not apply and you should make an appointment straight away to get it checked out.
Practical advice to lower your anxiety
This really is a case of finding what works best for you, but I have compiled the list below from research with survivors on things that have work for them and it may be a good starting point for you.
1. Exercise. Many of the survivors I know swear by cardiovascular activities, such as running, biking, hiking and brisk walking. Exercise has also been shown to reduce the risk of a cancer occurrence so it makes sense to get moving. Aim for activity that gets your heart rate up for 30 to 45 minutes.
2. Deep breathing. Did you know that 15 minutes a day of daily deep breathing can have a powerful effect on your anxiety and overall feeling of calm and wellness?
3. Complementary therapies such as reiki, massage and acupuncture can also help enormously with decreasing anxiety.
4. Spirituality. Spirituality is not just about prayer and religion, though for some this is a huge source of comfort. Any ritual that helps you get in touch with a higher source of strength, well being and purpose for your life will help you lower your anxiety.
5. Cognitive Behavioral Therapy (CBT).
The aim of CBT is to help you to change how you think (‘Cognitive’) and what you do (‘Behaviour’) in order to help you to feel better. It is based on the principle that certain ways of thinking can trigger, or fuel, certain health problems such as anxiety. A CBT therapist helps you to identify any unhelpful thought patterns you may have and how to change your ways of thinking to avoid these thoughts. Your doctor can recommend a CBT therapist for you or look up an accredited list of practitioners such as those listed on the website of The Psychological Society of Ireland.
6. Anti-anxiety medicines. If you tried other healthy ways of managing your anxiety, but are still feeling overwhelmingly anxious, then talk to your doctor about anti-anxiety medication. We know that people diagnosed with cancer are 15 to 25 percent more likely to experience depression and anxiety, and it is not uncommon for someone to go on an anti-anxiety medicine for a short or long period of time while trying to learn other coping skills.
7. Don’t get hung up on the statistics While cancer survival rates are useful in giving you a general idea of your prognosis they can’t tell you about your situation specifically. Some people choose to know everything about their type of cancer, including statistical survival rates, but others find that the statistics are just numbers which may bewilder and frighten them. Numbers are tools, not rules, so don’t get too hung up on them.
Now over to you? What ways have you found best for dealing with your fear of recurrence?
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Great post! I think you are right and the fear never fully leaves you – as you say your confidence in your body has been shattered by the cancer experience – but I also agree that the fear fades in intensity with time.
This practical advice is really helpful – I am struggling with a lot of anxiety right now around this issue and I am going to take your advice and put it into practise – starting with exercise. I have also booked a massage for later in the week.
Excellent practical tips here and I can endorse exercise as a wonderful way to banish the blues and help you feel back in control of your life again. In the begining you will feel tired and not up to much, but take it slowly and build up your exercise at your own pace. I promise you will feel the benefits in many areas of your life
Thank you for including anti anxiety meds in this post as I felt i was somehow a failure for having to go on them for a while last year. I do think it helped me think clearer and get motivated to put some healthier strategies in place.
I agree Emma that we can sometimes feel as if it is somehow shameful to have to “resort” to medication to deal with our anxieties but it is important to know that it is an option we can turn to when nothing else seems to have worked.
Excellent post.
It does get easier as the years go by,believe me.
I am almost 5 years since I was diagnosed,and after treatment am still thankfully N.E.D.,no evidence of disease.Them first few years afterwards was so so hard,I remember thinking with every twinge, oh no,its back…..You do get back to some kind of normal as time goes by,whatever normal is!!! Never ignore any new symptoms as I say,and if two weeks go by,get yourselves checked out….caring thoughts to everyone,onwards and upwards and the advice on this post is spot on,thankyou….x
Debra, welcome to the blog and thanks so much for taking the time to comment. May you continue to thrive as you journey beyond breast cancer x
I find yoga a wonderful way to control my stress – check out a local class and give it a try.
Yoga is wonderful on so many levels Alison.
I have just heard the news that my friend has been diagnosed with mets and it has shocked me deeply and brought up all my old anxieties about my own cancer again.
I am sorry to hear about your friend Deirdre and it is perfectly normal to react the way you have. One thing I will say is please don’t let this fear isolate you from your friend who will need your support now more than ever.
As someone living with secondaries, I think it is important that survivors prepare themselves (well as much as you can ever prepare yourself) for the possibility of a recurrence. The reality is that cancer does recur and you need to be vigilant, without letting it take over your life of course.
It is a terrifying prospect for many of us – that fear that cancer might return, but you know what has helped me? It has been reading stories that you have published rencently from bloggers such as Anna of Cancer Chronicles and seeing how she copes and survives gives me strength and hope that if the worst came to the worst, I could too.
So glad to hear that Anna has inspired you – she has opened my eyes to many realities that i hadn’t fully taken count of before. She is an amazing inspiration.
I tend to deal with it in a fatalistic way – I think your life is mapped out for you and if cancer is going to get you, well it is going to get you and you can’t spend your life worrying about this. So enjoy life – live it to the full and have no regrets when your time comes. I don’t mean this to sound flippant – i too have had my dark nights of the soul – but in the end, this is what has worked best for me.
I don’t think it is flippant Shauna – there is a lot of sense in what you say
In response to Shauna’s comment, i don’t think this is flippant at all. In fact I too believe it is the only way to live your life – to live fully in each day, and to be open to all the possibilities each day brings. I say this as a 3 year cancer survivor, diagnosed with a local recurrence 6 months ago.
Thanks Geraldine and I wish you well with your treatment and keep up that great attitude.
I was devastated when I was diagnosed with a recurrence of my breast cancer 2 years ago, but now 2 years later, I am surviving and as Geraldine says living each day as fully as I can – it truly is the only way to live.
Hi Iris – it is important for us to hear your voice of cancer survivorship – so often we don’t want to hear of anyone who has had a recurrence because it is a scary place for many of us to to to – so I thank you for sharing your thoughts with us and wish you continued health and well being
I know it isn’t easy but one of the things we have to learn with cancer is to let go of certainty and live for now. That is my way of coping, but it has taken me a while to get to this point. In the meantime, if you are struggling, I recommend you start by putting some of the above suggestions in place, begining with some exercise, deep breathing and meditation
Hi Amelia, thanks for sharing your thoughts and it is true that it is not always easy to put this into practise but ultimately it is the best way to live.
There is strong evidence to suggest that physical activity after diagnosis and treatment reduces the risk of breast cancer recurrence and can help improve quality of life so I would encourage you all to take up some activity which challenges you aerobically at least 3 times a week.
Thanks for your comment Jeanette and yes, the evidence is certainly there so we do well to heed it.
One thing you haven’t mentioned here is the role of diet in cancer prevention. As cancer survivors we really should be educating ourselves and others on a healthy diet which includes reducing or cutting out entirely alchohol from our diet
You are absolutely right Lara – this is an important point indeed.
Excellent post Marie – this is so much the elephant in the room and it echoes so much of the debate at the moment about Metastatic Breast Cancer and how we all need to engage in that debate.
I know I have a dread of recurrence. Every ache, pain and funny feeling is something sinister. My approach is to be proactive and take control of what is in my hands – the daily swimming obsession, taking great care with my diet, a sensible work/life balance etc. I know that if I do have a recurrence I can put my hand on my heart and say that I did what I could, and I trust would not have regrets that I could have or should have done things differently. Thanks
P
What a great comment Philippa and really we can’t any of us do much more than this.
I was first diagnosed with IBC August 2008 and have had two recurrences since – now metastatic. I remember I really struggled after the first round of treatment was done chemo, then radiation, then mastectomy with no evidence of malignancy left. I finally got my head round it by saying that if it came back it just meant more treatment, nothing more. Although I am now metastatic I will not say I’m dying of this disease unless dying is the only option I’ve got. Until then I’m going to be living!! The fear doesn’t go away but you learn to manage it in time.
Hi Jenny I am so glad you shared your story with us today and provided a link to your blog which I am looking forward to checking out. Your voice is such an important one for us to hear!
It is true the fear never disappears, but life must go on after BC. Being body aware is the only true way of dealing with the aftermath of BC. I find now I am taking my time and enjoying what life holds for me.
Sarah
Hi Sarah, thanks for your comment and for sharing your thoughts with us.
What a thorough and comprehensive post, Marie, something every cancer survivor can relate. My favorite word you’ve used is “aftermath,” as in what’s left in the wake of a flood, earthquake or tsunami. Nothing is the same again, and it will take time and lots of work to make things right again.
Thinking about your Mum.
XOXOXO,
Brenda
Marie,
This is a terrific post and I love the practical suggestions. I do worry about recurrence and possibly more so than the ‘average’ bc survivor since I am BRCA2 positive, even though I don’t even know the statistics for recurrence in this group. I’m not even sure there are any. Plus the fact my mom’s recurred, makes me worry a bit more. I find most of my worrying goes on at night when I wake up and cannot fall asleep.
I try to do what I can, so I can say if and when that happens I did all I could. Then I just try to ‘let go’ and live/enjoy life. Plus, I am inspired by those who have had a recurrence. Those women, like my mom, are my heros. They prove if and when recurrence happens, you don’t have to just ‘pack up’ and call it quits!
Thanks for a great comment Nancy, which pretty much sums up where I am at with this issue too. I do what I can – then let go and recently since hearing their stories, I too feel heartened and inspired by those for whom a recurrence has become a reality. I look at how they have faced up to the challenge and it gives me hope that if this happened for me, i could do the same with some of their same dignity and courage.
Thanks for this post Marie. Very interesting reading the responses and makes me feel ‘normal’ that I worry sometimes.
Perfectly normal indeed Sarah!
Singing, dancing and venting to loud rock’n'roll works, too.
So What? I’m Still A Rock Star
Love it!! And thanks for the link Ms Accidental Amazon
Love your blog! I am recently diagnosed with CML; a type of leukemia. I often find it hard to believe that I have cancerous blood running to every part of my healthy body! I am waiting and hoping for the remission stage of this disease!
http://cmlleukemia.blogspot.com/2011/05/chronic-myelogenous-leukemia-manage-it.html
Hi Michele, welcome to JBBC and thanks so much for your comment and for the link to your blog. I am looking forward to checking it out. Wishing you the very best with your treatment. M. x
Marie, great post! I hope you have eased the minds of many with your reassuring words and helpful hints for coping with the anxiety that inevitably accompanies a cancer diagnosis.
I found many of the suggestions you provide to be useful in lowering my fears of recurrence. I’ve already been through a recurrence so I am not quite as fearful, if that makes any sense. Running a 5K, sharing with audiences what has brought me hope (at support groups, cancer centers, women’s and caring ministry groups, and American Cancer Society events), taking long bubble baths, and listening to music that soothes my soul are some of the ways I deal with the angst. I just had my first one-year appointment with my oncologist today (instead of six-month checkups) and for the first time had no scanxiety, a word coined by Lori Hope that I like very much.
Thanks for sharing.
XOXOXO,
Jan
Jan, what reassuring tips you give – I feel calm just reading them and having never heard the term scanxiety, which I love, I shall be using that one myself in the future! Thanks for all you do Jan x
Marie,
Great tips for anyone dealing with this fear, and there are quite a few of us out there. I don’t often have it but I remember getting that ice cold feeling on the back of my neck when my family doctor ordered a tumor marker blood test about a year after my mastectomy. It completely blindsided me.
(The test was fine, and my three-post mastectomy mammograms have been fine, but boy did that give me chills.)
I am 6 years out and I got my tumor markers done earlier this year after my annual check up – I too felt that same feeling of horror and what if worry until I got the all clear. I guess it really does never leave you.
The thing about the two week rule is that it is turning me into a hypochondriac. I worry about pain that wouldn’t have been worrisome pre cancer. It also doesn’t help that I have developed many new pains, thanks to asomasin.
What a worry Lisa and I do understand how long 2 weeks can be! It can feel like an eternity. Some people like the structure of “rules” – some people don’t. I am also sorry to hear that asomasin is causing you other pain which can only be adding to the difficulties for you. Please seek whatever support you can to deal with your worries and anxieties and best of luck! M.
I am an 8 yr Breast cancer survivor. I was totally shocked when I found out I had cancer at 39. I took the bull by the reigns and decided it wasn’t going to get me. You have to keep a positive attitude when you are dealing with something like this or it will absolutely consume you! Stay positive and stay strong! That’s what my dad always said to me and it works, since he was as 30 yr prostate cancer survivor until he had a recurrence. Good Luck to everyone who is fighting it or has fought it. Let’s continue to beat the DEMON!
Great, informative post, Marie. Not a single day goes by where I don’t consider the possibility of recurrance, but life will be what it will be. I’m trying very hard to appreciate everyday and change the things I can control, such as diet and exercise. Although even with that in mind, I’m not so great on the exercise part.
Once you have a cancer diagnosis, your life is never the same. You live with cancer. Not a day goes by when you don’t have thoughts about it.
My first colonoscopy found I had cancer (thankfully stage 0). Further testing found I had the MYH gene that, studies show, guarantees you get colon cancer. Rather than have my colon removed (as doctors recommended) I elected for frequent screenings and removal of any polyps. In addition I started a very strict, healthy diet.
After 6 colonoscopies in 18 months and removal of 61 polyps (including the one with cancer) I had a perfectly clean colonoscopy. The diet worked!
Hi Chris, thanks so much for stopping by and sharing your story with us. You sure have been through a lot but wonderful to hear you have come out the other side. May you continue to thrive and be healthy!
Hi I have recently finished my radiotherapy, and have had all the feelings you are talking about, I am pleased to feel and know that I am not being wingy, I am planning walks, swimming and going on holiday to visit friends when I can. Thanks to everyone this page has done me the world of good, Im off for a pedicure and manicure at the support group its run my voluteers and it really helps. Take care everyone dont let it get you down .
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