Your feelings if blood cancer comes back or does not respond to treatment

Worrying that your cancer has relapsed or not responded to treatment can be challenging. You may be dealing with a lot of difficult emotions.

You might be concerned about symptoms you’ve noticed. Or something small might have triggered a memory of your diagnosis or treatment, which can make you worry you’ve relapsed. Perhaps the uncertainty of a possible relapse makes you feel anxious or scared for the future. Or maybe you wake up worrying in the night, with thoughts going round your head.

Some people feel especially anxious around the time of check-ups or while waiting for blood test results. Certain times of the year like the anniversary of your diagnosis, or special occasions like birthdays and Christmas can also make you feel worried about relapse. You may feel a mixture of fear you’ve relapsed and hope that you have not, or swap between the two.

This can all leave you feeling vulnerable and less secure than you used to.

You may try to ignore your concerns or put them down to something else. This might mean you delay speaking to your medical team. But it can be easy to get lost thinking about what may be wrong.

It can be difficult to talk about your worries because it can make them feel more real. But it is important to speak to your medical team. They can address your concerns, help you access support or arrange tests, depending on what you need. It can help to know that there is a plan.

Worrying about relapse can feel very lonely. Some people tell us they don’t want to tell others how they feel. You might feel like it would be a burden for your loved ones, or that you have to be strong for them. Being able to talk to someone can help you feel less alone. They can help support you.

You may prefer to speak to someone independent. This might help you discuss how you feel and find a way to manage your feelings.

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Finding out you haven’t responded to treatment or your blood cancer has come back can be difficult to cope with. It can be overwhelming and hard to process.

At first you might feel shocked or in disbelief. You might have similar feelings to when you were first diagnosed, but these emotions may feel more intense now. Or you might react differently this time.

Even if you expected to relapse at some point, you still might feel disappointed. It can be hard if you hoped to stay in remission for longer. This can leave you feeling low and resigned. Be kind to yourself and take the time you need to process it all.

You may feel angry or upset that you need more treatment. You might feel ‘why me?’ or blame yourself. It’s important to remember that it is not your fault.

You might feel low or sad, which is understandable. But if you feel hopeless, you lose interest or pleasure in life, or you feel low for several weeks, you may have depression.

If you think you might be depressed, contact your GP or nurse specialist. They can help you access the support and treatment that you need. This could be lifestyle changes, talking therapy or antidepressants.

When cancer comes back or doesn’t respond to treatment, it’s common to feel overwhelmed, even if you had always thought it might happen. It’s important to allow yourself the time you need to accept and process it.

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Adapting to a ‘new normal’ can be hard, and relapse can leave you feeling like you have to start again. You might be recovering from everything you have already been through, and it can be daunting feeling like you have to face it all over again. This might leave you feeling helpless or like you have lost control of your life again.

Often, things that helped you cope the first time, can help again now, like trying to take things a day at a time.

It is natural to feel worried, scared or anxious about treatment options or what your outcomes may be. Ask your medical team any questions you have. This can help reduce uncertainty and focus on a way forward that works for you.

Many people worry about how things will change and how they will cope. Using support networks you have from before can help you feel less alone and better able to cope.

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It can be hard to face further treatment, especially if you are worried about how you will cope with it, or if you will have side effects. Remember, your team are there to support you and can help you with any questions or concerns you may have.

Your previous experience of treatment can affect how you feel. You might have coped well with treatment before, which can help you feel like you can get through it. Or, you may have struggled with treatment and side effects, which can leave you feeling terrified or worried about having to face it again

You may have different treatment options this time around. Or you may be scared that there are no suitable options left for you. Some people do not want to have more treatment.

If you need to stay in hospital for treatment, you might feel anxious about being lonely or isolated. You may be worried about not being there for the people you love. If you have further treatment at home, you might be worried about not having a medical team around you to support you.

However you feel, it is important to talk to your medical team about your concerns and your treatment options. Ask any questions you have. You may want to discuss it with family members or friends. But it is your decision to make.

You might feel under pressure to have more treatment for your blood cancer, but the treatment you have is your choice. It’s important to remember that whatever you decide, you will still have treatment to manage your symptoms and side effects, to help maintain your quality of life.

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Some people tell us that they feel anxious about telling family and friends they have relapsed or not responded to treatment. You may worry about how they will react to facing it again, or feel like you are reliving when you were first diagnosed.

It can be hard to tell them. But talking about what is going on, how you feel and your worries can help them understand and be there for you.

It's OK to give yourself time to adjust and take things in before deciding to tell others. Remember, it is up to you who you tell, how you tell them and how much you share. It can help to make a list and plan what you want to say.

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Learning how to cope with your feelings if your cancer has come back or not responded to treatment can take time. Even when you have effective ways of dealing with your emotions, you may still have good days and bad days. It is important to be kind and patient with yourself.

It can be difficult if you feel like you are going through it all again or are struggling to process what it means for you. Everybody copes with their feelings differently. There is no right or wrong way to manage your feelings.

We have more information on coping with your feelings and getting support.

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Coping with a relapsed or refractory blood cancer can be difficult. You may need support from:

• Your healthcare team
• Family and friends
• Leukaemia Care
• Other charities

We are here to support you.

Our support services include:

We have more information on coping with your feelings and getting support.

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