Managing side effects

Treatment will cause some physical and emotional changes. Some women experience many side effects, while others have few. Most side effects are temporary but some may be permanent. This chapter explains ways to manage the discomfort that side effects may cause.

Fatigue

It is common to feel very tired and lack energy during or after treatment. Fatigue for people with cancer is different from tiredness as it doesn’t always go away with rest or sleep.

Most women who have chemotherapy start treatment before they have had time to fully recover from their operation. Fatigue may continue for a while after chemotherapy has finished, but it is likely to gradually improve over time. For some women, it may take up to 1–2 years to feel well again.

Tips for managing fatigue

  • Plan your day. Set small manageable goals and rest before you get too tired.
  • Ask for and accept offers of help with tasks such as cleaning and shopping.
  • Eat nutritious food to keep your energy levels up. It may help to see a dietitian.
  • Regular light exercise has been shown to reduce fatigue. Even a walk around the block can help.
  • Talk to your doctor about the amount and type of exercise suitable for you or ask for a referral to a physiotherapist or exercise physiologist.

Infertility

Surgery or radiation therapy for ovarian cancer will mean you are unable to conceive children. Before treatment starts, ask your doctor or fertility specialist about what options are available to you. Women under 40 who have stage I ovarian cancer may be able to have surgery that leaves the uterus and one ovary in place. They will, however, need to avoid pregnancy while on chemotherapy.

Many women experience a sense of loss when told that their reproductive organs will be removed or will no longer function. You may feel extremely upset if you cannot have children, and may worry about the impact of this on your relationship or future relationships. Even if your family is complete or you were not planning to have children, you may feel a sense of loss and grief.

If you have a partner, you may find it helpful to talk to them about your feelings. Speaking to a counsellor or gynaecological oncology nurse may also help. You can find more information in Cancer Council’s booklet Fertility and Cancer. Call 13 11 20 for a free copy or visit your local Cancer Council website.

Menopause

If you were still having periods (menstruating) before surgery, having your ovaries removed will mean you no longer produce the hormones oestrogen and progesterone, and you will stop menstruating. This is called menopause. For most women, menopause is a natural and gradual process that starts between the ages of 45 and 55.

Symptoms of menopause can include hot flushes, dry or itchy skin, mood swings, trouble sleeping (insomnia), tiredness and vaginal dryness. These symptoms are usually more severe after surgery than during a natural menopause, because the body hasn’t had time to get used to the gradual decrease in hormone levels.

Tips for managing the symptoms of menopause

  • Vaginal moisturisers available over-the-counter from chemists can help with vaginal discomfort and dryness.
  • Talk to your doctor about the benefits and risks of hormone replacement therapy (HRT). If taken after natural menopause, HRT containing oestrogen may increase the risk of some diseases. If you were already on HRT when the cancer was diagnosed, you will need to weigh up whether to continue.
  • Menopause can increase your risk of developing thinning of the bones (osteoporosis). Talk to your doctor about having
    a bone density test or taking medicines to prevent your bones becoming weak. Regular exercise will help keep your bones strong. Osteoporosis Australia has more information – visit osteoporosis.org.au or call 1800 242 141.
  • Cholesterol levels can change after menopause, which can increase your risk of heart disease. Regular exercise and a balanced diet may help improve cholesterol levels. If not, talk to your doctor about cholesterol-lowering drugs.
  • Meditation and relaxation techniques may help reduce stress and lessen symptoms.
  • Talk to your doctor or call Cancer Council 13 11 20 about ways to relieve the symptoms of menopause.

Impact on sexuality and intimacy

Ovarian cancer can affect your sexuality in physical and emotional ways. The impact of these changes depends on many factors, such as treatment and side effects, your self-confidence, and whether you have a partner.

Treatment can cause physical side effects such as vaginal dryness, scarring, internal scar tissue (pelvic adhesions, see page 50), and narrowing of the vagina. These side effects can make sexual penetration painful, and you may have to explore different ways to orgasm or climax. The experience of having cancer can also reduce your desire for sex (libido).

For most women, sex is more than arousal, intercourse and orgasms. It involves feelings of intimacy and acceptance, as well as being able to give and receive love. Although sexual intercourse may not always be possible, closeness and sharing can still be part of your relationship.

Changes to your body can affect the way you feel about yourself (your self-esteem) and make you feel self-conscious. You may feel less confident about who you are and what you can do. Give yourself time to adapt to any changes. Try to see yourself as a whole person (body, mind and personality) instead of focusing on the parts that have changed.

Look Good Feel Better runs workshops to help people manage the appearance-related effects of cancer treatment – go to lgfb.org.au or call 1800 650 960.

Tips for managing sexual changes

  • Give yourself time to get used to any physical changes. Let your partner know if you don’t feel like having sex,
    or if you find penetration uncomfortable.
  • Show affection by touching, hugging, massaging, talking and holding hands.
  • Talk to your doctor about ways to manage side effects that change your sex life. These may include using vaginal dilators, lubricants and moisturisers.
  • If vaginal dryness is a problem, take more time before and during sex to help the vagina relax and become more lubricated.
  • Extra lubrication may make intercourse more comfortable. Choose a water-based or silicone-based gel without perfumes or colouring.
  • Spend more time on foreplay and try different ways of getting aroused.
  • Try different positions during sex to work out which position is the most comfortable for you.
  • If you can’t enjoy penetrative sex, explore other ways to climax, such as oral and manual stimulation.
  • Talk about your feelings with your sexual partner or doctor, or ask your treatment team for a referral to a sexual therapist or psychologist.
  • Do some physical activity to boost your energy and mood. Talk to your GP if your low libido is caused by depression.
  • Call 13 11 20 for a free copy of Sexuality, Intimacy and Cancer, or visit your local Cancer Council website.
  • Cancer Australia’s booklet Intimacy and sexuality for women with gynaecological cancer – starting a conversation is a good source of information (see canceraustralia.gov.au).

Bowel changes

After surgery or during chemotherapy or radiation therapy, some women notice bowel problems. You may experience diarrhoea, constipation or stomach cramps. Pain relief medicines may also make you feel constipated. Diarrhoea and constipation can occur for some time, but often these bowel changes are temporary.

Ask your doctor, nurse or dietitian for advice about eating and drinking, and see the tips below for suggestions on preventing or relieving these side effects.

Tips for managing bowel changes

  • Drink plenty of liquids to replace fluids lost through diarrhoea or to help soften stools if you are constipated. Warm and hot drinks work well, but avoid alcohol and caffeinated drinks.
  • Avoid fried, spicy or greasy foods, which can cause pain and make diarrhoea and constipation worse.
  • Ask your pharmacist or doctor about suitable medicines to relieve symptoms of diarrhoea or constipation.
  • Eat small, frequent meals instead of three big ones.
  • Drink peppermint or chamomile tea to reduce stomach or wind pain.
  • If you have diarrhoea, rest as much as possible as diarrhoea can be exhausting.
  • If you are constipated, do some gentle exercise such as walking.
  • Call Cancer Council 13 11 20 for a free copy of the Nutrition and Cancer booklet.

Treating a blockage in the bowel

Surgery for ovarian cancer sometimes causes the bowel to become blocked (bowel obstruction). A bowel obstruction can also occur if the cancer comes back. Because waste matter (faeces) cannot pass through the bowel easily, symptoms may include feeling sick, vomiting, or stomach discomfort and pain.

To relieve the symptoms, you may have a small tube (stent) put in that helps keep the bowel open. The stent is inserted through the rectum using a flexible tube called an endoscope.

Occasionally, the blockage in the bowel is treated with a stoma. A stoma is a surgically created opening in the abdomen that allows faeces to leave the body. Part of the bowel is brought out through the opening and stitched onto the skin. A small bag is worn on the outside of the body to collect the waste. This is called a stoma bag or appliance. The stoma may be reversed when the obstruction is cleared or it may be permanent.

There are two types of stomas for a bowel obstruction:

  • colostomy – made from part of the colon (large bowel)
  • ileostomy – made from the ileum (part of the small bowel).

People often have many questions after a stoma. A specially trained stomal therapy nurse can show you how to look after
the stoma. For more information, contact the Australian Association of Stomal Therapy Nurses at stomaltherapy.com, visit the website of the Australian Council of Stoma Associations at australianstoma.com.au, or call Cancer Council 13 11 20.

Internal scar tissue (pelvic adhesions) Tissues in the pelvis may stick together after a hysterectomy (known as an adhesion). These can be painful or cause bowel problems such as constipation. Rarely, adhesions to the bowel or bladder may need to be treated with further surgery.

Fluid build-up

Sometimes ovarian cancer can cause fluid to build up in the body.

Ascites

This is when fluid collects in the abdomen. It causes swelling and pressure, which can be uncomfortable and make you feel breathless. Your doctor will inject a local anaesthetic into the abdomen and then insert a needle to take a sample of the fluid.

This is called paracentesis or ascitic tap. The fluid sample is sent to a laboratory to be examined for cancer cells. Sometimes, to make you feel more comfortable, the doctor will remove the remaining fluid from your abdomen. It will take a few hours for all the fluid to drain into a drainage bag.

Pleural effusion

For some women, fluid may build up in the area between the lung and the chest wall (pleural space), which can cause pain and breathlessness. The fluid can be drained using a procedure called thoracentesis or pleural tap. You will have a local anaesthetic and a needle will be inserted into the pleural space to drain the fluid.

Lymphoedema

Some women who have lymph nodes removed from the pelvis (a lymphadenectomy, see page 29) may find that one or both legs become swollen. This is known as lymphoedema. It can happen if lymph fluid doesn’t drain back into circulation properly and builds up in the legs. Radiation therapy in the pelvic area may also cause lymphoedema. Lymphoedema may appear at the time of treatment or months or years later. Lymphoedema may make movement and some types of activities
difficult. It is important to seek help with lymphoedema symptoms as soon as possible. Early diagnosis and treatment lead to better outcomes. Though lymphoedema may be permanent, it can usually be managed. Gentle exercise, compression stockings, and a type of massage called manual lymphatic drainage can all help to reduce the swelling.

To find a practitioner who specialises in managing lymphoedema, visit the Australasian Lymphology Association website at
lymphoedema.org.au. For tips on preventing and managing lymphoedema, download Cancer Council’s Understanding Lymphoedema fact sheet from your local Cancer Council website.

If your GP refers you to a lymphoedema practitioner, you may be eligible for a Medicare rebate. Talk to your GP about developing a Chronic Disease Management Plan or Team Care Arrangement to help you manage the condition.

Feeling low or depressed

It is common and understandable to feel low or anxious after a cancer diagnosis, during treatment or when you are recovering. Some women feel sad because of the changes the cancer has caused. Others are frightened about the future. If you often feel irritable, tense or on edge, experience frequent worries, find it hard to wind down, or have difficulty sleeping, you may be experiencing anxiety.

There is a difference between feeling down and experiencing depression. If you have continued feelings of sadness or emotional numbness on most days for two weeks, or have lost motivation to do things that previously gave you pleasure, you may be experiencing depression.

Talk to your GP, as counselling or medication – even for a short time – may help. Some women are able to get a Medicare rebate for sessions with a psychologist. Ask your doctor if you are eligible. Your local Cancer Council may also run a counselling program.

The organisation beyondblue has information about coping with depression and anxiety at beyondblue.org.au. If you would like to talk to someone about how you are feeling, call Lifeline on 13 11 14 or beyondblue on 1300 22 4636.

“My advice to other women is: be kind to yourself, this is really tough. Don’t feel like you have to be strong all the time. It is okay to be sad at times. You don’t always have to ‘keep it together’.” Patricia

Looking after yourself

Cancer can cause physical and emotional strain. It is important to try to look after your wellbeing as much as possible.

Nutrition

Eating healthy food can help you cope with treatment and side effects. A dietitian can help you manage special dietary needs or eating problems, and choose the best foods for your situation. Call Cancer Council 13 11 20 for a free copy of the Nutrition and Cancer booklet.

Staying active

Physical activity may help to reduce tiredness, improve circulation and lift your mood. The amount and type of exercise you do depends on what you are used to, how you feel, and your doctor’s advice. Cancer Council’s Exercise for People Living with Cancer booklet provides more information about the benefits of exercise, and outlines simple exercises that you may want to try.

Complementary therapies

These therapies are used with conventional medical treatments. You may have therapies such as massage, relaxation and acupuncture to increase your sense of control, decrease stress and anxiety, and improve your mood. Let your doctor know about any therapies you are using or thinking about trying, as some may not be safe or evidence-based.

Alternative therapies are used instead of conventional medical treatments. These therapies, such as coffee enemas and magnet therapy, can be harmful. For more information, call 13 11 20 for a free copy of the Understanding Complementary Therapies booklet, or visit your local Cancer Council website.

Relationships with others

Having cancer can affect your relationships with family, friends and colleagues. This may be because cancer is stressful, tiring and upsetting, or as a result of more positive changes to your values, priorities or outlook on life.

Give yourself time to adjust to what is happening, and do the same for others. People may deal with the cancer in different ways – for example, by being overly positive, playing down fears, or keeping a distance. It may be helpful to discuss your feelings with each other or with a health professional, such as a nurse or a counsellor.

Life after treatment

For most women, the cancer experience doesn’t end on the last day of treatment. Life after cancer treatment can present its own challenges. You may have mixed feelings when treatment ends, and worry that every ache and pain means the cancer is coming back.

Some women say that they feel pressure to return to “normal life”, but they don’t want life to return to how it was before cancer. You may want or need to make changes to your life. Take some time to adjust to the physical and emotional changes, and establish a new daily routine at your own pace. Your family and friends may also need time to adjust.

Cancer Council 13 11 20 can help you connect with other women who have had cancer, and provide you with information about the emotional and practical aspects of living well after cancer.

Many treatment centres now work with people as they approach the end of their treatment to develop survivorship care plans. These plans set out ways to manage any physical or emotional issues that may develop after treatment. For more information, call Cancer Council 13 11 20 for a copy of the Living Well after Cancer booklet.

Follow-up appointments

After your treatment, you will usually have regular check-ups to confirm that the cancer hasn’t come back or spread, and to manage any long-term side effects of treatment.

Follow-up appointments may include a physical examination, discussion about any side effects or other concerns, blood tests and scans, including ultrasounds and CT scans.

These appointments may be with your gynaecological oncologist or medical oncologist. There is no set follow-up schedule for ovarian cancer, but women commonly see their specialist every three months for the first two years, and every four to six months for the next two years. Some women prefer not to follow a schedule but to see their specialist if they experience symptoms. Check with your doctor if you are unsure of your follow-up plan.

It’s common to worry before follow-up appointments. To help ease your concerns, you may want to talk to your doctor or nurse about what to expect during check-ups.

Having CA125 blood tests

Your specialist will also talk to you about the advantages and disadvantages of having regular CA125 blood tests.

This test is optional – research has found that waiting until symptoms develop before starting treatment is just as effective as starting treatment earlier. This means that quality of life is improved as side effects of further treatment are delayed.

What if ovarian cancer returns?

For many women, ovarian cancer does come back after treatment and a period of improvement (remission). This is known as a recurrence.

Even after a good response to initial surgery and chemotherapy, it is likely that cancer will recur in women who were first diagnosed with advanced epithelial ovarian cancer. Usually the longer the time between the end of the first course of treatment and the recurrence, the better the response will be to further treatment.

Many women have a number of recurrences, with long intervals in-between when they do not require any cancer treatment.

The most common treatment for epithelial ovarian cancer that has come back is more chemotherapy or targeted therapy. The drugs used will depend on what drugs you were initially given, the length of remission and the treatment aims. The drugs used the first time may be given again if you had a good response to them and the cancer stayed away for six months or more.

New drugs are constantly being developed. Genetic screening and targeted therapy are offering new treatment options for women with ovarian cancer. Talk with your doctor about the latest developments that may be available through clinical trials (see page 26).

Tips for dealing with uncertainty

  • Talk with other women who have had ovarian cancer. You may find it reassuring to hear about their experiences. See page 60 for information about support groups.
  • Keep a symptom diary to track how you’re feeling.
  • Explore different ways to relax, such as meditation or yoga, to deal with stress and anxiety.
  • Talking to a psychologist or counsellor about how you are feeling might help. They may be able to teach you some strategies to help you manage your fears.
  • Practise letting your thoughts come and go without getting caught up in them.
  • Try to exercise regularly. Exercise has been shown to help women cope with the side effects of treatment.
  • Focus on making healthy choices in areas of your life that you can control, such as what you eat.
  • Set yourself some goals – as you achieve each one, set some new goals.
  • For more information, see Cancer Council’s Emotions and Cancer booklet.

Seeking support

Cancer may cause you to experience a range of emotions, such as fear, sadness, anxiety, anger or frustration. It can also cause practical and financial problems.

Practical and financial help

There are many services that can help deal with practical or financial problems caused by the cancer. Benefits, pensions and programs can help pay for prescription medicines, transport costs or utility bills. Home care services, aids and appliances can also be arranged to help make life easier.

Ask the hospital social worker which services are available in your local area and if you are eligible to receive them.

If you need legal or financial advice, you should talk to a qualified professional about your situation. Cancer Council offers free legal and financial services in some states and territories for people who can’t afford to pay – call 13 11 20 to ask if you are eligible.

Talk to someone who’s been there

Coming into contact with other women who have had similar experiences to you can be beneficial. You may feel supported and relieved to know that others understand what you are going through and that you are not alone.

Women often feel they can speak openly and share tips with others who have gone through a similar experience.

In a support group, you may find that you are comfortable talking about your diagnosis and treatment, relationships with friends and family, and hopes and fears for the future. Some women say they can be even more open and honest in these support settings because they aren’t trying to protect their loved ones.

Types of support

There are many ways to connect with others for mutual support and to share information. These include:

  • face-to-face support groups – often held in community centres or hospitals
  • telephone support groups – facilitated by trained counsellors
  • peer support programs – match you with someone who has had a similar cancer experience, e.g. Cancer Connect
  • online forums – such as Cancer Council Online Community at cancercouncil.com.au/OC. Talk to your nurse, social worker or Cancer Council 13 11 20 about what is available in your area.

“I found talking to other people who’d been through the same thing so important.” Amanda

Last Reviewed: 30/04/2018

Your Doctor. Dr Michael Jones, Medical Editor.



References

Cancer Council Victoria. Understanding Ovarian Cancer. Last Updated April 2018. https://www.cancervic.org.au/downloads/resources/booklets/Understanding-Ovarian-Cancer.pdf

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