When you first learn you have incurable breast cancer (which is sometimes called secondary, advanced, metastatic or stage 4 breast cancer), you may have many questions and emotions arising including: anxiety, anger, disbelief, sadness, grief, loneliness, lack of control and the need for more information. The mix of one or more of these feelings can make you feel overwhelmed.

Your journey with incurable breast cancer will probably also mean having further treatments. Advances in research and treatment options means that many of those with incurable breast cancer are able to live well for months and years whilst maintaining a good quality of life. But for others time may be more limited.

Our Sweet Louise Support Coordinators can help support you to navigate through your journey with breast cancer, find the right people to answer your questions and bring a little joy back to you. Anyone who has been diagnosed with incurable breast cancer and lives in New Zealand can become a member of Sweet Louise.Our Support Coordinators stay in touch with our members to offer ongoing support.

Sweet Louise organise members meetings around the North Island and Canterbury giving members an opportunity to get together with others with incurable breast cancer to share similar experiences and support each other. Further expansion of meetings into the South Island is planned for the future.

There are many organisations in New Zealand and internationally that provide useful support and information on treatment, emotional and practical support (see links list below).

The need for online information and support for those with incurable breast cancer is increasing. Sweet Louise suggests the online community group “Metavivors” to members as a support and information sharing portal. (see links list below).

As one of our Sweet Louise members said in our members satisfaction survey, “During my journey, Sweet Louise helps me stay strong. ”

Louise Perkins lived with secondary breast cancer for 10 years.

These are her some of her Tips for Life:

  • Go to the party
  • It’s not about how you look, it’s about how you are
  • Five fruit and veg
  • Buy the present for the person
  • Think of the good in people
  • Positive visions
  • Is there something sweet?
  • Touch, listen, trust
  • Love the children
  • Don’t procrastinate, do it!
  • Tell me how you feel, not just what the facts are
  • Most importantly, love

Receiving a diagnosis of incurable breast cancer can leave you experiencing a rollercoaster of emotions that you may find overwhelming. Those close to you can experience the same emotions. It is normal to feel this way and everyone is different in the way they react.

Trying to let the emotions ‘do their thing’ and let them run their course is useful. If you feel that sadness, depression or fear, are becoming hard to bear or your feelings are not improving over time it is a good idea to speak with someone and share how you are feeling. Keeping stressful thoughts to yourself over periods of time can affect overall health, wellbeing and outcomes.

Talking to someone out with your family and friends can be useful when you wish to discuss things that you think may upset those close to you. You may just want to talk to someone who can help you. Your Sweet Louise Support Coordinator can recommend who could be the right person for you to talk to including your health specialist, free psychology/counselling with Cancer Society (if available in your area,) and Sweet Louise members can use their vouchers for counselling/ support in their area (if available.) Seeking help is not a sign of weakness but a strong and positive thing to do. We all need help from time to time.

A diagnosis of incurable cancer can affects our relationships with partners, family and friends. It can mean changes in jobs, earnings and financial situation and can impact on physical abilities too. Choosing to ignore feelings and emotions may build up more stress and problems for you in the future.

There are some tips, ideas and suggestions that may help you, and those close to you to cope:

Your partner

The stresses of your diagnosis, the physical effects of treatments and an uncertain future can put considerable strain on the relationship with your partner. Their stress levels can be as high as yours.

Their paramount fear is that of loss and sometimes professional help is needed – don’t hesitate to seek it.

A diagnosis of serious illness can change the role of your partner from spouse to caregiver and there are many feelings that go along with that.

  • Sometimes your partner may be unsure of the right way to support you.
  • Their needs for information can differ from yours and they may feel they have questions that have not been answered yet. Or feel uncomfortable asking.
  • There is the notion that reassurance can be helpful (“It’s all going to be all right”) but sometimes it isn’t and their failed attempts to reassure can make them feel powerless, helpless, frustrated.
  • Your cancer is something they simply cannot fix.
  • Some partners may cope with your diagnosis by withdrawing, avoiding talking about your cancer, or appearing frustrated and angry at their inability to cope. Talking to your partner is the first step to helping. Tell your partner, what you needs are. Keep your requests simple but focused so that they can work towards achieving them. This will also make them feel wanted and valued.

What you can do:

  • Open and honest communication – share the ups and downs and take the journey together.
  • Let your partner know that you are aware that they are having a hard time too.
  • Sometimes all you need is for your partner to listen, and vice versa.
  • Say what it is you need – your partner can’t always read your mind!
  • Encourage your partner to think about their needs too – work together to find solutions and support.
  • Both of you may need ‘time out’ from each other sometimes – recognise this and allow for it.
  • Talking about what you really need can help. When conversation is too difficult, you could try writing down your concerns/issues as a list, or in a letter to your partner.
  • Seek advice and help if/when you need it – from a friend, relative, counselor or someone who is outside of your situation. There is power in asking for help.
  • Enjoy some special times together – plan these and make them a priority. Plan a weekend break or visit special places that hold precious memories for you both.

Having breast cancer doesn’t mean you have to stop having sex. Sex will not make your cancer worse and having sex can provide comfort, reassurance, confidence and support.

Cancer and cancer treatments may affect your desire for sex. The symptoms and side effects of treatment may cause physical discomforts during sex (for example, pain and vaginal dryness) and general worries, stress, fatigue and anxieties can lower your libido. Your partner may be concerned about hurting you during sex or have general concerns about the effect sex may have on you.

If you have a partner then there are many ways to share love and intimacy including: touch, talking, stroking, kissing and cuddling. It is very important to speak openly and honestly with your partner so your mutual needs are met.

If you are having sexual problems, do discuss this with someone from your medical team. They may be able refer you and your partner to a specialist counsellor who can help. Here are some other things to think about:

  • Talk to your partner with openness and honesty this can stop barriers occurring.
  • Think of ways to stimulate or reignite your passion. Create anticipation by imagining sex before it happens and try other ways of being romantic and intimate with each other. Ask each other what you would like.
  • Be an ‘active listener’ – listen to your partner, discuss needs, preferences, frustrations, what works and what doesn’t.
  • Nurture all aspects of your relationship.

Sex and Cancer Treatments

  • In general, sexual activity is safe during treatment however check with your specialist about sex during your treatment to ensure safety
  • Vaginal dryness is often a side effect of cancer treatments. It can cause pain and discomfort. Using a vaginal lubricant can help. Lubricants can be purchased at your local supermarket or pharmacy. Baby oil or other oils are not a good substitute for lubricant as they can cause inflammation and subsequent pain.
  • If you have a low white blood cell count or low platelet count during treatment you may need to refrain from any sexual activity that involves penetration. This is because there is an increased risk of infection or bleeding when your counts are low.
  • Pregnancy is strongly discouraged during chemotherapy (this applies to both men and women receiving chemotherapy), due to the potential effects on the developing baby. If conception is possible, your doctor will likely encourage you to choose a reliable method of birth control.
  • If using condoms, use non-latex varieties as latex can irritate the vaginal area.
  • Urinary and bladder control can be affected by menopause (natural or brought on by treatments) and bladder infections can occur after sex. See your GP.
  • Emptying your bladder prior to having sex can reduce urinary tract infection rates.
  • Pelvic floor exercises help to reduce discomfort during sex.
  • For men with breast cancer Chemotherapy does not often cause erectile dysfunction, though it may affect desire for sexual activity. Your desire may fluctuate over the course of treatment.

Here are some tips that may help you navigate your journey and set achievable goals while living with breast cancer:

Web Search Tips

When you do an internet search on your cancer or treatments use a website that comes from a known academic or medical source. Never rely on websites that sell things to you. If you are checking out research always make sure it is linked to a medical or university facility or institution and the research sample is not small numbers as this does not give a true picture of how well something works.

Communication Tips

  • Share your feelings with someone. Sometimes talking to someone who has gone through the same experience can help. Sweet Louise hold members meetings in the North Island and Canterbury area for members to support each other and to enjoy other activities. We are planning to expand members meetings into the South Island in the future.
  • Joining Metavivors NZ is an opportunity to join an online independent group for those living with secondary breast cancer. This is a closed Facebook group you can ask to join by emailing BCAC: bcac@breastcancer.org.nz
  • Sweet Louise offers a toll free line on 0800 11 22 77 (during office hours), where you can speak to one of the Support Coordinators.
  • Tell those close to you what you need and how they can help. It is acceptable to agree to offers of assistance.
  • You might find it difficult to refuse to do something but don’t be afraid to say ‘no thank you’. People will understand and you will feel more in control of what you want to do.

Emotional Health Tips

Your emotional health is really important to your health and quality of life. There are ways to look after your emotional health:

  • Set some simple, realistic goals and review these every few months and change them if needed.
  • Do something you enjoy doing. Take time out to do something that makes you feel happy. You may want to use your Sweet Louise vouchers for this.
  • Writing down your thoughts can be very calming. Keeping: journals, diaries, scrapbooking, drawing or even painting what is on your mind can help you process your thoughts and emotions.
  • Thinking about what you feel right now or ‘being in the moment’ can help filter out negative thoughts and let you enjoy: sitting in the sun, hearing bird song, noticing the sights, sounds and sensations of all around you.
  • Constant stress and worry can be exhausting. You could try setting aside an hour each day as ‘worry time’. Focusing on your worries by imagining putting them in a box that can be closed and put away after the hour is up. You can then keep calm for the rest of the day.
  • If you are on your own, going out and talking to people can make you feel less alone. Joining groups or finding something new to do can bring you into contact with other people.
  • Look at the things you do not like to do. Try to make a list of these and then write down how you can stop doing them or change them to make them enjoyable. Then start working through your list.

A Google search will turn up a number of options so do be selective when accessing sites for information.

Your oncologist or breast care nurse may give some suggestions. Here are a few that we use for up-to-date information and you may find them helpful too.

Cancer Information Websites

(listed alphabetically)
Australian Breast Cancer Centre
www.canceraustralia.gov.au

Breast Cancer Aotearoa Coalition
www.breastcancer.org.nz

Breast Cancer Network Australia
www.bcna.org.au
The site also has a very helpful page of downloadable pdfs on various topics
of interest at http://bcna.org.au/resources

Breast Cancer Network New Zealand (BCN)
www.bcn.org.nz

Breast Haven
www.thehaven.org.uk

Breast Cancer Care UK
www.breastcancercare.org.uk

Breast Cancer Support (BCS)
www.breastcancersupport.co.nz

Cancer Society New Zealand
www.cancernz.org.nz

Macmillan Cancer Support
www.macmillan.org.uk

National Cancer Institute USA
www.cancer.gov

The New Zealand Breast Cancer Foundation
www.nzbcf.org.nz

Community Services

CAB Language Link
language@cab.org.nz

Mobility Parking
www.mobilityparking.org.nz

Nationwide Health and Disability Advocacy Service
www.advocacy.hdc.org.nz

Health and Wellbeing

Casting for Recovery
www.castingforrecovery.org.nz

The Gawler Foundation
www.gawler.org

Look Good Feel Better
www.lgfb.co.nz

Lymphoedema Support
www.lymphoedemanz.org.nz

Online Forums

There are many worldwide. A New Zealand based one is:

Metavivors NZ
Register via bcac@breastcancer.org.nz

Please note:
The websites listed here are not maintained by Sweet Louise. If you come across a link that seems to be broken, please do let us know so that we can keep these resources up to date.