Survivors

We define ‘cancer survivor’ to be one who has been diagnosed with cancer, from the time of diagnosis through the rest of his or her life. You may be uncomfortable with the term ‘survivor’ or feel that it does not apply but it helps some people think about life beyond their cancer.

When treatment is over, you may think the worst is over and it is time to get back to your normal life. However, most survivors realise that the first few months of post-treatment is a time of change. Usually, things don’t “get back to normal” but there is a new “normal” where you are likely to find new meaning in life and look at things differently. Your new “normal” may mean changing in our ways of life (routines, activities, diet and others).

It is extremely important for all survivors to have follow-up care as knowing what to expect post-treatment helps you and people around you make plans or adjust to necessary changes. Some common questions you may have:

• Should I tell the doctor about symptoms that worry me?
• Which doctors should I see after treatment?
• How often should I see my doctor?
• What tests do I need?
• What can be done to relieve pain, fatigue, or other problems after treatment?
• How long will it take for me to recover and feel more like myself?
• Is there anything I can or should be doing to keep cancer from coming back?
• Will I have trouble with health insurance?

Your follow-up care will depend on the type of cancer and type of treatment you had, along with the state of your health. Generally, survivors have a check-up every 3 to 4 months during the first 2 to 3 years after treatment, and once or twice a year after that. During check-ups, your doctor will check for side effects from treatment and if the cancer has returned or spread to another part of your body.

Tests that may be performed during check-ups include:

• Blood tests
• MRI or CT scans that take detailed pictures of areas inside the body’s at different angles
• Endoscopy which uses a thin, lighted tube to examine the inside of the body

An open communication with your doctor is crucial as both of you need as much information as possible to manage your care process. For some people, they may choose to have a different doctor for follow-up care from the doctor who provided treatment. If this is your choice, make sure you have a folder containing all the necessary information, which include:

• When you were diagnosed
• Type of cancer and its treatment
• Pathology report(s) describing the type and stage of cancer
• Places and dates of specific treatment, such as:
  • details of all surgeries
  • sites and total amount of radiation therapy
  • names and doses of chemotherapy drugs and any other drugs
  • key lab reports, x-ray reports, CT scans and MRI reports
• Lists of symptoms to watch out for and possible long-term effects of treatment
• Contact information for all health care professionals involved in your treatment and follow-up care
• Any problems during or after treatment
• Supportive care you received (special medicines, emotional support and nutritional supplements)

One of the new “normal” as a survivor would be keeping a close watch on your physical abilities or any changes to your body. At each follow-up session, tell your doctor if you are having any unusual difficulty with everyday activities or any new symptoms so that he or she can help you manage them. Some of the issues to be aware of may include:

• New symptoms
• Pain that troubles you
• Problems that affect your daily life such as tiredness, weight gain or loss, trouble sleeping, sexual problems or others
• Possible effects of medicines, vitamins, herbs or treatment you are using
• Other health problems such as heart issues, diabetes or arthritis
• Emotional problems like anxiety or depression, that you may have now or had in the past
• Changes in your family’s medical history, such as relatives with cancer
• New information you want to know of, such as new research or side effects

If you experience a new symptom, it does not mean that the cancer has returned. Symptoms can be due to other problems that need to be addressed.

Many people may feel worried or anxious about a follow-up session. Here are some helpful ideas to get the most out of your visit to the doctor:

• If possible, have someone come with you. A friend or family member can help you think and understand what was said or may be able to think of new questions to ask.
• List down your questions before seeing your doctor.
• Take notes or tape-record the answers, if possible.
• Describe your problem or concern briefly and tell your doctor how this problem makes you feel. Ask the most important questions first, in case your doctor runs out of time.
• If you feel you need more time, don’t be afraid to ask your doctor for a longer session at the next appointment.
• Don’t hesitate to ask your doctor to explain and clarify until you are clear about something.
• Ask your doctor if he or she has any materials you can bring home to read and understand more.

Cancer and its treatments can change the way you feel. No two people experience the same changes, although the cancer and treatment are the same. Even after treatment has ended, some survivors still cope with certain side effects over some time. Among the common effects include:

Pain

You may or may not experience pain post-treatment. Types of pain may include:

• Painful scars from surgery
• Pain or numbness in the hands and feet because of injured nerves, which could have been damaged by chemotherapy
• Pain in a missing limb or breast, which doctors have yet to figure out

Tell your doctor about the pain you are experiencing. When describing the pain, you can try these methods:

• Describe if the pain is sharp, dull, throbbing or steady?
• Point out exactly where it hurts
• How long does it last? does it improve or get worse at certain times or when you do certain things?
• Use a scale of 0-10 to describe how bad the pain is
• How much does the pain affect your daily life?
• Tell your doctor about medicines you are taking (for any reason). If you are taking pain relief medications, are they helpful?
• Do the pain relief medications give you side effects such as constipation, other changes in bowel habits, or feeling groggy?

Keep a record of your pain levels so you can check if it changes over time. It can help you see how you respond to any pain relief medication.

After your doctor assesses your pain levels and he / she will find ways to help you cope using:

• Pain relief medicines. Usually you will be given low dosages / mildest medicines and work up to stronger ones if necessary. To control pain, do not skip doses or wait until you hurt before taking the medicine. Some people may be afraid of being addicted to these medicines but it rarely happens if you take the correct dose and see your doctor regularly.
• Physical therapy using heat, cold, massage, pressure and/or exercise may help you feel better
• Some antidepressant medicines are prescribed to reduce pain or numbness from injured nerves
• Acupuncture which uses needles at pressure points to reduce pain
• Braces to limit movement of a painful limb or joint
• Relaxation skills can help relieve pain or reduce stress
• Hypnosis, meditation or yoga
• Nerve blocks or surgery can help if you have persistent pain but may put you at risk for other problems

Fatigue / Tiredness

The most common complaint during the first year post-treatment is fatigue or tiredness. This could be caused by cancer therapy. Fatigue can also be attributed to anaemia (lack of red blood cells), a weak immune system, poor nutrition, lack of liquids and depression. Pain can worsen fatigue.

• The length of fatigue lasting varies from person to person. You may feel frustrated if it does not go away as soon as you thought it would.
• Some issues may contribute to your fatigue. Do ask your doctor about:
  • Medicines you are taking or other medical problems that may affect your energy level
  • How to control pain, if you experience any
  • Relaxation exercises or other exercise routine (walking)
  • Changing your diet or drinking more fluids
  • Helpful medicines or nutritional supplements
  • Assistance from physical therapists, occupational therapists, nutritionists or mental health care providers
• You can cope better with fatigue by making some changes in your daily life:
  • Be active at the time you feel your best.
  • Take breaks or short naps between activities.
  • Try to sleep and wake up at the same time daily.
  • Change your way of doing things to save energy e.g. sit while washing dishes.
  • Don’t be shy to get help. For example, doing the laundry, cooking, running errands.
  • Do what you enjoy but do less especially activities that can tire you.
  • You could join a support group to find more ways to cope with fatigue.

Memory / Concentration Changes

• One in four survivors experience memory and attention problems after chemotherapy, presented in difficulty finding the right word or remembering new things.
• Research found that people who had chemotherapy or radiation to the head area have higher risk of experiencing memory problems.
• Sometimes, these issues may be attributed to other factors. Talk to your doctor if:
  • you are still having memory and thinking problems. You can see a specialist about this.
  • you think a medicine could be the reason or contributing to the problem.
  • you think you have depression or anxiety which can affect attention, concentration and memory.
  • you are going through menopause as memory and concentration problems can be related.
• If you are experiencing memory and concentration issues, here are some ideas to manage:
  • write down your daily “to-do” list. Plan out the whole day, keeping it simple and realistically achievable
  • put notes or signs around the house to remind you of tasks e.g. throwing out rubbish
  • group longer numbers into chunks e.g. 7227 9923 (seventy-two, twenty-seven, ninety-nine, twenty-three)
  • whisper each step of a task to yourself
  • go over once of few times what you plan to say such as names, dates, events etc.
  • repeat to yourself what you want to remember
  • manage stress as learning how to relax can help you remain calm in stressful moments

Nervous System Changes (Neuropathy)

Your nervous system may be affected by the cancer treatment you had. The problem can if you have conditions like diabetes, kidney failure, alcoholism and malnutrition. Common symptoms of neuropathy:

• Tingling in the hands or feet, starting with the fingertips and toes
• Burning, weakness, numbness in the hands and feet
• Sudden, sharp, stabbing or electric shock sensations
• Loss of touch sensation
• Loss of balance or difficulty walking
• Trouble picking up things or buttoning clothes
• Hearing loss
• Jaw pain
• Constipation
• Decreased sensitivity to hot and cold

Treatment for neuropathy includes medications, topical creams and pain patches. Other methods may be acupuncture, physical therapy and exercise. Here are some ways to manage neuropathy:

• To avoid falling, hold onto handrails and put no-slip bath mats in the tub or shower area. If you find difficulty balancing, use a cane or other device to steady yourself.
• Wear tennis shoes or footwear with rubber soles
• Be careful when handling knives, scissors and other sharp objects
• Use thermometer and gloves when you need to check water temperatures

Lymphoedema / Swelling

A part or parts of the body swells due to buildup of lymph fluids. It can be caused by cancer or its treatment and often occurs in the arm, leg, face or neck. Some types of lymphoedema happens right after surgery and do not last long while others occur months or years after cancer treatment and can be painful. Risk of lymphoedema is present in people who have had:

• Breast cancer – if radiation therapy was done, or underarm lymph nodes removed, or had radiation in the underarm area after removal of lymph nodes.
• Prostate cancer – if surgery or radiation therapy was done on the whole pelvis.
• Cancer of the female or male reproductive organs – if surgery was done to remove lymph nodes or radiation therapy was given.
• Melanoma of the arms or legs – if lymph nodes was removed and / or had radiation therapy.
• Other cancers that spread to the lower abdominal area- pressure from a growing tumour can cause difficulty for the body to drain fluid

Ways to relieve and manage lymphoedema:

• Keep your skin clean and use lotion to keep it moist
• Ask your doctor about exercises to help the body drain lymph fluid and types of exercise that you should avoid
• Wear special elastic sleeves and clothing that enable lymph fluid to drain
• Have special massages that can help move the lymph fluid away from where it settled
• Keep the affected arm or leg raised above the chest for periods of time
• Avoid having injections in the affected area
• Eat a well-balanced, protein-rich, low-salt diet
• Watch the area for signs of swelling or infection
• Keep the affected area free from cuts, insect bites and sunburn
• Try not to use affected arm or leg to figure out temperatures such as bath water as you may be less able to feel hot and cold

Mouth or Teeth Problems

Radiation treatment or surgery to the head and neck are prone to cause problems to the teeth and gums. It also affects the soft, moist lining of the mouth, glands that make saliva and jawbones. Some related effects from chemotherapy include:

• Dry mouth
• Loss of or change in sense of taste
• Painful mouth and gums
• Infections in the mouth
• Dry mouth
• Cavities and other tooth problems
• Jaw stiffness or jawbone changes

Managing mouth or teeth problems:

• Keep your mouth clean (brush after every meal and before bedtime, use an extra soft toothbrush and a mild fluoride toothpaste)
  • Make it a habit to floss your teeth everyday. If there are areas that bleed or hurt, avoid those spots. If you wear dentures, clean, brush and rinse them after meals.
  • Keep your mouth moist (drink a lot of water, suck on ice chips, chew sugarless gum or suck on sugar-free hard candy)
  • If your mouth is sore, stay away from:
• Hot and spicy food, acidic food and drinks
• Sharp, crunchy food like chips that may scrape your mouth
• Sugary food as they cause cavities
• All tobacco products and alcoholic drinks
• Toothpicks as they can cut the mouth

Bladder or Bowel Control Problems

Loss of bowel and / or bladder control is very common after treatment for bladder, prostate, colon, rectal, ovarian or other cancers. Some people still have some control but may need to visit the bathroom more often than usual. At the same time, medication can also cause constipation. If you experience these problems, tell your doctor. He / she can teach you Kegel exercises or prescribe medications that may help.

Weight Loss / Gain and Eating Habits

Some chemotherapy drugs or other medicines results in weight gain and these extra pounds stay on even when treatment ends. Breast cancer treatment can cause muscle loss but survivors are likely to gain fat tissue. Take your time in losing the extra weight. Avoid going on crash diets for fast results, but eat healthy and exercise regularly. In time the weight will go off.
At the same time, some survivors lose their appetite, resulting in weight loss which affect their strength and ability to perform daily tasks.

Tips to regain a lost appetite:

• Eat small meals – 6 small meals a day is easier to manage than 3 large ones
• Eat your favourite foods – you do not really have to worry about a balanced diet at this time
• Take a short walk before eating to work up an appetite

Trouble Swallowing

Radiation therapy or chemotherapy may cause you to have difficulty in swallowing, particularly if therapy was given to the head, neck, breast or chest. Surgery involving the larynx may also contribute to this problem. Tips to manage:

• Process solid foods with a blender
• Take a sip of water every few minutes to help you swallow and talk more easily
• Tilt your head back or forward while you are eating
• Add sauces or gravies to soft, bland food for more flavour. Soups, puddings, bananas an other soft fruits are good options.

Menopause Symptoms

Chemotherapy and certain medications can cause a woman’s period to become irregular or stop altogether. Although you would have known of this possibility, it is alright to feel grief at losing your fertility. Common signs of menopause include:

• Hot flushes which often occur a night. It can affect sleep or cause mood changes. Try these tips to manage hot flushes:
  • Keep yourself hydrated, especially with water
  • A healthy weight through a balanced diet and regular exercise helps you maintain an optimum condition
  • Quit smoking
  • Sleep in a cool room to avoid waking up because of hot flushes
  • Wear clothing that lets your skin ‘breathe’
  • If you feel a hot flush coming, try having a cold drink
  • Limit alcohol, caffeine and spicy foods
• Irregular periods which is the first sign of menopause. Periods become lighter or very heavy bleeding occurs in short spurts of time, or it may stop all of a sudden.
• Tissues in the vagina and bladder become drier and thinner, exposing you to vaginal infections. You may also have difficulty holding your urine or have urinary tract problems
• Lack of interest in sex as menopausal symptoms makes it hard for you to become aroused
• Fatigue and sleep problems where you find difficulty sleeping or getting back to sleep after waking up in the middle of the night. You may also get up earlier than usual.
• Difficulty remembering things
• Depression, mood swings and irritability
• Other changes such as losing muscle, gaining fat around the body or thinning and loss of skin’s elasticity

Menopause can affect your bone strength, putting you at risk for osteoporosis (weakened and brittle bones). Ask your doctor about medicines, supplements or other solutions to keep your bones healthy and strong. Menopause can also increase cholesterol, which raises your risk of diseases affecting your heart and blood vessels.

Changes in Body and Intimacy

Cancer and its treatment may leave some short-term or permanent changes to your body. Effects can include scars, skin changes, loss of limbs or changes in weight. You may fear that your appearance has changed and your loved ones, especially children, are afraid of you. If you experience changes in the way you look, these tips may help you cope:

• Acknowledge your grief if you lost a limb or any part of your body.
• Find new ways to boost your confidence- a new haircut, hair colour, makeup or clothing may help.
• If you have a breast form (prosthesis), make sure it fits you well.
• If radiation caused changes to your skin, ask your doctor how to care for it.
• Try to recognize that coping with cancer has made you stronger and wiser, and know that you are worth more than how you look or how cancer affected you.

Your relationship and intimate life could be affected by cancer and treatment (surgery, chemotherapy, radiotherapy or medications). About half of women who underwent long-term treatment for breast and reproductive organ cancers and many men who had treatment for prostate cancer experience sexual problems. Even emotional issues contribute to sexual problems as survivors may feel anxiety, depression, guilt for having cancer, changes in body image post surgery and stress between you and your partner.
Among the issues involving intimacy include:

• Struggle with body image after treatment and feeling stressed at being seen without clothes
• Worry that sex will be painful, unable to perform or feel less attractive
• Some cancer treatments cause changes in sex organs, which directly changes sex life:
  • unable to maintain an erection after treatment for prostate cancer, penile cancer or testicular
  • women may find it difficult or painful to have sex or experience loss of sensation in their genital area.
• Women who have menopausal symptoms experience hot flushes, dryness, and tightness in the vagina and / or other problems affecting their desire to have sex.
• Infertility. If you want children, ask your doctor about possibilities of doing so after treatment.

Sexual issues do not go off on their own. You will require some form of treatment or management methods to improve the situation:

• Muscle weakness – Kegel exercises strengthen muscles in the genital area. Practice the exercise by controlling your muscles as though you are stopping the flow of urine.
• Erection problems – certain devices, medications, counseling or surgery may help. There are other approaches but consult your doctor before trying out anything.
• Vaginal dryness – water based lubricants, vaginal dilators or hormone pills or creams may help.
• Talking with a counselor/psychologist/sex therapist – if your sexual problems are related to emotions such as stress or body image, talking with professionals may help you and your partner improve intimacy in your relationship.

Being open with your partner on the issues affecting your sex life is the most important step to improve the situation. Talk about your concerns, why you are feeling this way about your sex life and what can possibly help you feel better. If you’re not sure how to start the conversation, you may say something like this:
“I understand that cancer may have affected our sex life and I would really like to know how you feel. Maybe we can work this out together?” It is important that you are open minded to your partner’s point of view.

• Focus on what your partner said, not what you plan to say in response.
• Ask questions to help you understand your partner’s views better.
• Acknowledge that your partner’s views matter.

Tips to feel good about intimacy:

• Think about what makes you feel confident and attractive
• Focus on the positive and learn to appreciate your body
• Be open to changing the ways of being intimate
• Kisses, hugs, cuddles and touching are small steps towards rediscovering intimacy

Emotions

Being diagnosed with cancer and going through tests and treatments will surely change the way you feel about yourself. Many survivors worry about cancer returning, especially in the first year post-treatment. As time goes by, they usually think of cancer less often. If you find yourself feeling anxious, here are some ways that may help you cope:

• Acknowledge and express your feelings of worry, sadness, anger or fear. You can talk to someone close, a counselor or write a journal if you prefer not to share.
• Choose to look at the positive even if it’s a bad time. Focus on keeping yourself as healthy as possible.
• It’s alright to feel down at times and if you do, let your family or carer know so that they will not worry.
• Learn and understand as much as possible about your cancer. Studies show that those who are well-informed are more likely to follow treatment plans and recover faster.
• Find activities that can help you relax and be active as much as you can.

Many survivors have feelings of sadness, tense or anger even after treatment is over. It could be the knowledge of change, going back to life before treatment. This could be a stressful time as they struggle to adjust. For most people, these feelings go away over time but some people have it worse, and it may become depression. Here are some signs of depression:

• Feeling overwhelmed and out of control
• Feeling sad, worried and anxious
• Feeling hopeless or helpless
• Short-tempered or moody
• Feeling emotionally numb
• Difficulty in concentrating
• Often focusing on worries or problems
• Feeling guilty or unworthy
• Difficulty in enjoying everyday things like being with friends or eating
• Trying to avoid situations that you know are harmless
• Thinking of hurting yourself

If you find yourself experiencing these feelings for more than 2 weeks, talk to your doctor immediately to improve your situation.

You may feel stress at certain issues such as family, work or finances because you could put them aside during treatment. Now that you are feeling better, you may need to handle these issues. There may be other reasons for your stress and it would be advisable you find ways to manage the stress for a healthier life.

• Meditation or relaxation can help lower stress as you quiet down your mind. You can also try hypnosis or yoga.
• Exercising is proven to reduce stress and tension. Ask your doctor what exercises you can do in your condition.
• Creative outlets such as music, art, dance or writing helps you express yourself in different ways.
• Sharing experiences and hearing from people helps strengthens your knowledge that you are not alone.
• Laughter helps you relax (watch a comedy, read funny jokes etc)

You might also feel lonely post-treatment as your health care team who were with you during treatment is no longer beside you. You may even feel somewhat separated from your family and friends post-treatment. Although they want to help, they may not know how. There are also people who may be scared of cancer and cut off contact with you. If you feel overwhelmed by loneliness, these suggestions may help:

• Find new support partners (family, friends, other survivors)
• Ask one of your treatment nurses or doctors if you could call sometimes
• Join a cancer support group. Find a support group near you here

Reference: Information on this section was adapted from National Cancer Institute. www.cancer.gov.my