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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