Survivorship & Life After Treatment

Almost all cancer survivors will face psychological and emotional issues that can show up many years after treatment. This section will help describe some of the most common issues that cancer survivors may face and ways to help overcome them.

Recovering from cancer treatment isn't just about your body — it's also about healing your mind. Though you, your friends and your family are all eager to return to a more normal life, it can be scary to leave the protective cocoon of doctors and nurses who supported you through treatment. Therapy, support groups, social media and community resources are available to help you cope with these issues. The first step in coping with psychosocial changes is realizing that you have an issue and having the courage to reach out for help.

Here are some of the most common issues that cancer survivors may deal with:

  • Fear of Recurrence
  • Grief & Depression
  • Loneliness
  • Body Image
  • Spirituality
  • Family Issues

Fear of Recurrence

Many survivors worry that their cancer will come back at some point.. Though they may go years without any sign of disease, cancer survivors say the thought of recurrence is always with them. Milestone events in their cancer journey can often trigger these feelings. You might worry that every ache or pain is a sign of your cancer recurring. Eventually these fears will fade, though they may never go away completely. Knowing your own body can help distinguish between normal physical changes and more serious symptoms that need to be reported to your doctor.

Cope with your fear by being honest with yourself about your feelings. Try not to feel guilty about your feelings or ignore them in hopes that they'll go away. Ask your doctor about what you can do to reduce your chance of a cancer recurrence.

Once you've done all you can to reduce that risk, acknowledge your fears. Take control of those fears and do what you can to influence your future health.

Try to:

  • Take care of your body. Focus on keeping yourself healthy. Eat a healthy diet with plenty of fruits and vegetables. Fit exercise into your day. Go easy at first, but try to increase the intensity and amount of exercise you get as you recover. Get enough sleep so that you wake feeling refreshed.
  • Go to all of your follow-up appointments. You may fear the worst when it's time for your next follow-up appointment. Don't let that stop you from going. Use the time with your doctor to ask questions about any signs or symptoms that worry you. Write down your concerns and discuss them at your next appointment.
  • Ask about your risk of recurrence and what signs and symptoms to watch for. Knowing more may help you feel more in control.
  • Get all of your follow-up tests. Discuss with your doctor plans for follow-up and monitoring of your cancer. Together, you will formulate a specific follow-up plan based on your specific situation. Not everyone needs regular scans or blood tests.
  • Ask your doctor about creating a plan to look for late side effects of the cancer therapy. Many cancer treatments can cause side effects years later.
  • Be open about your fears. Express your concerns to your friends, family, other cancer survivors, and your doctor or a counselor. If you're uncomfortable with the idea of discussing your fears, try recording your thoughts in a journal.
  • Keep busy. Get out of the house and find activities that will take your mind off your fears.

These actions may help your body recover from cancer treatment and also help put your mind at ease by giving you a greater sense of control over your life.

Grief & Depression

It is estimated that 70% of cancer survivors experience depression at some point. Lingering feelings of sadness and anger can interfere with your daily life, and grief is a natural result of loss. Loss can include your health, sex drive, fertility and physical independence. For many people these feelings of grief and sadness will dissipate. But for others, these feelings can develop into depression. Tell your doctor about your feelings. If needed, you can be referred to someone who can help you through talk therapy, medication or both. Early diagnosis and prompt treatment are keys to successfully overcoming depression. Know the symptoms of depression and seek treatment as soon as possible. 

Loneliness

You might feel as if others can't understand what you've been through, which makes it hard to relate to other people and can lead to loneliness. Friends and family might be unsure of how to help you, and some people may even be afraid of you because you've had cancer.

Don't deal with loneliness on your own. You might consider:

A therapist: Your doctor may be able to refer you to a professional who can help you sort through your emotions and come up with ways to deal with your feelings.

Other cancer survivors: Support groups, whether in your community or online, provide a great place to share your feelings and hear from others who are going through what you're experiencing.

Offering your own expertise to other patients who are going through active treatment and can help them on her journey.

Devise your own plan for coping with your emotions. Have an open mind and try different strategies to find out what works best for you.

Body Image

Cancer and its treatments can change your body and appearance. Some treatments may affect your skin, nails and hair. Other treatments may affect how a part of your body works.

Changes to your body may be temporary or permanent. They include changes that can be seen by others, changes in skin colour, the loss of a limb, or weight gain. They also include changes that are not obviously visible to others. For example, treatment effects such as infertility can also affect your body image and make you feel vulnerable about your body. If surgery or other treatment changed your appearance, you might feel self-conscious about your body and it may make you feel like you’d rather stay home, away from people. You might withdraw from friends and family. And self-consciousness can strain your relationship with your partner if you don't feel worthy of love or affection. A negative body image can affect your desire for intimacy and social interaction. Honesty and open communication with loved ones can minimize negative feelings.

Take time to grieve. But also learn to focus on the ways cancer has made you a stronger person and realize that you're more than the scars that cancer has left behind. When you're more confident about your appearance, others will feel more comfortable around you.

Common invisible changes include the following:

  • Hair loss — you may lose some or all the hair from your head and sometimes your eyebrows, eyelashes and body hair.
  • Skin and nail changes.
  • Scarring or losing a part of your body from surgery.
  • Losing weight or putting on weight.
  • Lymphoedema — swelling of an arm, leg or other part of the body.
  • Changes in the way you speak, eat or breathe, or changes in your movement, balance or coordination.

Body changes that are not visible can include the following:

  • Infertility or having an early menopause.
  • Reduced sex drive or difficulties having sex.
  • Feeling tired and weak or unable to do activities you did before treatment.
  • Late treatment effects that change the way your bladder or bowel work.
  • Changes in sensation. For example, numbness in part of your body after surgery, or in your hands and feet after chemotherapy (peripheral neuropathy).

Always let your cancer doctor or nurse know if you have body image concerns during or after treatment. There are different ways they can help and support you.

Reconstruction Surgery

Reconstructive surgery is most commonly needed after some types of surgery to remove the cancer. An example is when a surgeon replaces tissue or nerves removed during treatment for head and neck cancer. Reconstructive surgery may help you to feel more confident about your appearance.

Scars

Scars usually improve in how they feel and look in the months after surgery. They gradually fade and become softer over time. Sometimes people are unhappy because of how a scar looks or if it feels tight and uncomfortable. This may cause concerns about your body. It could also affect relationships and how you feel about being physically intimate with another person.

Tell your doctor or nurse how you feel about the scar. There are usually different treatments that may help. You may have a combination of these. You can use skin camouflage make-up to help make a scar less noticeable.

Your doctor may prescribe creams or gels to help a scar heal, make it feel softer or lighten its colour. If a scar is uncomfortable and stiff, physiotherapy may help to soften it and make it more comfortable. Steroid injections may be used to soften and flatten certain types of scar.

It may also be possible to have surgery to make a scar less noticeable. Doctors call this scar revision. A surgeon can do this under a general anaesthetic or sometimes under a local anaesthetic. You may have to wait up to a year or sometimes longer after your first operation to have this done.

Prosthesis

If you wear any type of prosthesis (false body part) and do not feel confident, talk to your nurse or doctor. The prosthesis may not be the right fit, type or colour match for you. This could be because it was not correct to begin with or because it is now damaged. Or it could be that your body weight or shape has changed since it was fitted.

Even if your prosthesis is still in good condition, they can arrange for you to be reassessed. If you have had the prosthesis for a while, there may be new, improved types available.

Spirituality

Many survivors find that life takes on new meaning after cancer and will renew their commitment to spiritual practices or organized religion. Research suggests that spirituality improves quality of life through a strong social support network, adaptive coping, lessened depression and better physiological function.

Family Issues

When treatment ends, families are often unprepared for the fact that recovery takes time. In general, your recovery will take much longer than your treatment did. Survivors often say that they didn't realize how much time they needed to recover. This can lead to disappointment, worry, and frustration for everyone. 

Families also may not realize that the way their family works may have changed permanently as a result of cancer. They may need help dealing with the changes and keeping the "new" family strong.

Some survivors say they would not have been able to cope without the help and love of their family members. And even though treatment has ended, they still receive a lot of support. For other families, problems that were present before the cancer diagnosis may still exist, or new ones may develop. You may receive less support than you had hoped. At the same time you’re going through these things, your family is still adjusting too. It may be hard for all of you to express feelings or know how to talk about your cancer. 

Common problems with loved ones include:

  • People expect you to do what you did before your cancer. For instance, if you used to take care of the house or yard before your treatment, you may find that these jobs are still too much for you to handle. Yet family members who took over for you may want life to go back to normal. They may expect you to do what you used to do around the house.
  • You may expect more from your family than you receive. They may disappoint you, which might make you angry or frustrated. For example you may get less attention and concern than you did during treatment.
  • You may still need to depend on others during this time. Even though you want to get back to the role you had in your family before, it may take a while to get into a routine.

 

Getting Help with Family Issues

After treatment, you may want to consider getting help from someone to help you and your family adjust. Ask your doctor or social worker to refer you to a counselor. An expert on family roles and concerns after cancer treatment may help your family work on your problems.

How do you cope with family issues? Here are some ideas that have helped others deal with family concerns:

  • Let others know what you're able to do as you heal - and what not to expect. For example, don't feel like you have to keep the house or yard in perfect order because you always did in the past.
  • Know that this is a new time in your life so it may take time to adjust. Roles in the family may change again and different emotions may get triggered. This is normal. 
  • Give yourself time. You and your family will be able to adjust over time to the changes cancer brings. Just being open with each other can help ensure that each person's needs are met. Good communication is still very important.

Talking With Children and Teens

Help the children in your family understand that it may take a while for you to have the energy you used to have now that you are finished with treatment. Be open about what you can and can’t do.

You don't have to tell your kids about every checkup or every symptom that occurs. But do tell them if you still have side effects that make certain things hard for you to do. If you’re not able to do an activity or go to an event, the children may think that you’re unhappy or mad at them.

Children of cancer survivors have said that these things are important once their parent has finished treatment. That you:

  • Be honest with them
  • Speak as directly and openly as possible
  • Keep them informed about your cancer and involved in your recovery
  • Spend extra time with them
  • With your permission, other family members should also be open with your children about your cancer and its treatment.

Sources:

https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-survivor/art-20047129

https://www.cancer.gov/about-cancer/coping/survivorship“Family Issues after Treatment was originally published by the National Cancer Institute.”

https://www.mdanderson.org/patients-family/life-after-cancer.html

https://www.esmo.org/for-patients/patient-guides/survivorship

https://www.cancer.gov/publications/patient-education/someone-you-love-completed-cancer-treatment 

https://www.cancer.gov/about-cancer/coping/self-image

https://cancer.ca/en/living-with-cancer/coping-with-changes/your-emotions-and-cancer/coping-with-body-image-and-self-esteem

https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Managing_body_image_problems_after_cancer_treatment.pdf

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/changes-to-your-appearance-and-body-image

https://www.aboutkidshealth.ca/article?contentid=3619&language=english (kids)

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