The fear of melanoma coming back or progressing is a very common experience following a melanoma diagnosis. The intensity of these fears can range from an occasional thought at the back of one’s mind, to pervasive thoughts that leave no room for thinking about anything else. Everyone has different ways of coping, and the aim of this article is to provide support through some practical strategies.
The anxiety around recurrence is described by Ingrid in the video below. Ingrid finds the most challenging time is when she’s waiting on scan results. Watch to see how Ingrid manages her anxiety.
This video is part of a four-part video series called Melanoma Matters, produced by Melanoma Institute Australia.
Why Do I Keep Worrying About Melanoma?
From the moment that melanoma is diagnosed, there are a lot of questions that go through people’s minds, such as:
- Will the treatment work for me?
- Will the melanoma come back or get worse?
- Will my next scan be clear?
- How long will the treatment work for?
These questions are typically about the future, and although we can have some idea about the likely outcomes, we can never know for sure. Melanoma diagnosis, treatment, and survivorship carry a lot of inherent uncertainty – and we naturally respond to uncertainty by focusing on the worst-case scenario. This is simply our brain’s attempt to keep us safe. By focusing on the worst-case scenario, it gives us a sense that we are prepared for it (if it happens), or even relief when the worst-case scenario does not come true.
It can be disheartening and frustrating to experience these fears and worries over and over again. Some people think about melanoma coming back or spreading all the time, while others find that they don’t think about their melanoma much but hearing a news story about melanoma, cancer, or any other chronic disease could result in hours, or perhaps days, spent worrying about their own melanoma, making it hard to focus on anything else. At times not being able to control these fears makes people consider whether they are coping well, whether they will ever stop worrying, and whether they will be able to enjoy life like before the diagnosis. These thoughts only contribute to their distress.
If this describes your experience, it may be helpful to know the periods of time where uncertainty is more common, which can include:
- Waiting for the results of a recent biopsy/scan
- Receiving a melanoma diagnosis
- Weighing up your treatment options
- Starting a new treatment regime
- Noticing and experiencing any adverse effects of treatment
- Completing your treatment regime
- When attending your scheduled follow-up appointments
- When feeling unwell or noticing any changes in your body
Strategies to manage your anxiety
The above transition points often raise a lot of questions and uncertainty. Expecting that your fears and worries may flare up during these times may reduce some of this distress and make it feel more manageable. It may also allow you to prepare by thinking of activities that can get your mind off melanoma during these periods (e.g., watching a favourite movie, listening to enjoyable music, sharing a meal with loved ones, or seeking additional social support).
Other strategies that may be helpful for you include:
- Following your medical practitioner’s recommendations about your follow-up care. Perhaps your fears and worries want you to see doctors sooner or later than recommended, which is often not helpful – so it helps to remember that these recommendations are based on the best research and evidence.
- Usually, these fears will increase when there is uncertainty. Ask yourself: What am I uncertain about? What do I need more information about? Write these down and see whether your medical practitioner can provide you with some additional information that will reduce your uncertainty.
- Talking to your treatment team about your prognosis and the actual risk of recurrence. There are now sophisticated tools available for your medical practitioner to calculate your personal risk based on your melanoma’s characteristics.
- Knowing the signs of recurrence. Sometimes every ache or pain can result in a worry that melanoma is back or has spread, so it is helpful to know exactly what to look for and how often to perform a self-examination.
- Joining a support group. People who are a part of a support group often find relief in knowing that the members of their group share similar concerns and worries. Realising that your difficulties are shared amongst others may make you feel more connected.
- Recognising your emotions. We call this strategy: ‘Name It to Tame It’. Sometimes a great deal of distress comes from trying to push away or avoid emotions – when this happens, the emotions tend to grow even larger in our minds. When we acknowledge and name them, these fears and worries will appear more manageable.
- Looking after yourself. Many aspects of your melanoma are not within your control, which can also be distressing and increase feelings of uncertainty. Take charge by looking after your body. Get the basics right – a good sleep routine, nutrition, and exercise can go a long way to help with your coping. Avoiding unhealthy habits, such as smoking and excessive alcohol, can also contribute to a sense of control over your health and body.
- Engaging in activities that are important to you. Having melanoma always on your mind makes it hard to focus on other things, which can decrease your motivation to do things during the day. Not doing much during the day leaves a lot of time to ponder about melanoma and the future, which will intensify your fears and worries. Doing things that matter to you will give you opportunities to focus on things other than melanoma and you may be surprised that you may even get some breaks from thinking about it.
Seeking professional help
Some of these strategies may already be familiar to you – while others may be worth trying. Sometimes following these tips may be easy, and at other times more difficult. If you are finding that the fears about your melanoma are distressing and they get in the way of relationships and daily activities, it may be worth seeking professional help – usually from a psychologist or a counsellor. Speak to your GP or melanoma treatment team for referral. You can see our article on seeing a psychologist here to know what to expect: Seeing a psychologist as a part of your melanoma support team
Other signs that you may need additional help include:
- Finding yourself avoiding follow-up appointments or seeking more frequent reassurance than recommended.
- Feeling hopeless about the future.
- Changes in sleep and appetite.
- Difficulties in doing things that you used to enjoy.
- Difficulties concentrating.
- Increases in smoking, alcohol consumption or other substance use or other unhealthy habits.
- Difficulty making decisions.
- Find out more about Melanoma Patient Support Groups
- Melanoma Institute Australia’s Self-Care and Support Booklet
- Melanoma Institute Australia’s Support Services Directory
Throughout 2022, our team has been researching how we can better support people diagnosed with Stage O, I, and II melanoma regarding their fears about melanoma coming back or spreading. More information about this study can be found here: Melanoma Psychological Support Study. We are pleased to report that we have completed recruitment with 115 people signing up to participate in the study. The study sites involved have reported that this project has been well received, which further highlights people’s need for support. While anecdotal feedback about this study has been overwhelmingly positive, we will provide an update including our results in 2023. We are also seeking funding to investigate better support services for people diagnosed with Stage III and IV melanoma regarding their fears about melanoma and the future.
I have had 6 melanomas – 1st one on side of leg then on numerous areas of the body. First diagnosed September 2011 then found out I also have CCL. I am very positive but as each checkup time gets closer it becomes worrying. Just need to get on with life & try my best. Regards Carol Sternbeck
I had level 4 melanoma on my back 35 years ago and had an operation to remove a great deaL of my back. I was really scared because I had three children, 18, 16 and 9 and I was a single mother. The two eldest I knew would be OK if I died but the youngest would not be able to go to his father, or I didn’t want him to go. I finally mentioned my anxiety to the two older kids and was surprised to find they had made a plan to keep Tom with them until he left school. I said they shouldn’t have a burden or a responsibility like that and they told me Id be dead and it was what they had decided. I was amazed.
After surgery I have had no other melanoma until now. I had a pet scan of my chest for a minor breathing problem and they found a level 4 melanoma on a node in my lung. It has been surgically removed and I am now on immunotherapy for a year.
I want to know what happened in that 35 years so I end up with only one melanoma. That space seems very odd/unusual?