TRAVEL INSURANCE WITHMETASTATIC BREAST CANCER

FACT SHEET

January 2017 This fact sheet was produced by Breast Cancer Network Australia

A diagnosis of metastatic breast cancer sometimes sparks a desire to fulfil lifelong dreams of travel. Travel may also be a longer-term goal to look forward to working towards. If you are thinking of travelling – either within Australia or internationally –there are a few things you will need to consider if you have metastatic (secondary) breast cancer.

We have produced this fact sheet to help answer some questions you might have about travel insurance after a diagnosis of metastatic breast cancer. There is a separate fact sheet that covers travel insurance after early breast cancer.

International travel is more complicated than travel within Australia because you are not covered by Medicare once you leave the country. It is also unlikely that your private health insurance will assist with medical costs once you are outside Australia.

It took a bit of organising but it was great to get away. You know – sometimes I need a holiday from this breast cancer business.

It is important to shop around for a travel insurance policy, and ask questions about what the policy does and does not cover.

Reading the product disclosure statement, sometimes referred to as ‘the fine print’, before making a decision can ensure that you are clear about what the policy does, and more importantly doesn’t, cover you for.

What is travel insurance?

Travel Insurance covers you for specific losses, illness or injuries related to your travel.

Most travel insurance is sold for overseas trips.

While some policies cover domestic travel within Australia, these don’t include hospital and medical expenses because these are already covered by Medicare and/or your private health insurance.

What does travel insurance cover?

Travel insurance policies may cover some or all of the following:

• lost luggage and personal effects• theft of money and goods• cancelled holidays • overseas medical and dental expenses• death and disability allowances • emergency travel arrangements and

accommodation expenses• personal liability• hijacking• legal expenses• rental vehicle insurance excess.

Each policy is different so it is important to think about what cover you want. As with any insurancepolicy you will need to read the details of the policy to check it covers the things that are important to you.

Do I have to have travel insurance?

The choice to take out travel insurance is a personal decision. Like any other insurance, travel insurance is optional. You may find it helpful to consider the potential risks if you do not have insurance.

Clinical trials

Anxiety, depression and breast cancer

GP mental health treatment plan

Lymphoedema

Superannuation and insurance payments for

people with a terminal illness

Fear of cancer recurrence

Breast cancer and sexual wellbeing

Helping a friend or colleague with breast cancer

Metastatic breast cancer: an introduction

Exercise and breast cancer

Beware Dr Google: A guide to reliable breast cancer

information on the internet

Hair loss during breast cancer treatment

Men get breast cancer too

Travel insurance

Fertility-related choices

Breast cancer pathology

Hormone therapy and breast cancer

Patient Assisted Transport Schemes (PATS)

Family history

Bone health and breast cancer

Breast Cancer Network Australia (BCNA) offers free, practical and relevant fact sheets and booklets on a range of topics. For more information, to download or order, visit bcna.org.au/resources.

You can also order a printed copy by phoning 1800 500 258.

Information about breast cancer

Healthy eating and breast cancer

Menopause and breast cancer

Financial and practical assistance

Chronic disease management plan

I wish I could fix it: supporting a partner

through breast cancer

Sleepless nights: breast cancer and sleep

CLINICAL TRIALS

FACT SHEET

September 2011 This fact sheet was produced by Breast Cancer Network Australia

What are clinical trials?

‘For me, the request to participate in a clinical trial came at a time when there were so many other important decisions to make. And what was a clinical trial anyway?’

Clinical trials are scientific research studies that involve patients to help find better treatments. When we think of treatments for breast cancer, we often think that only means drugs, but they can include measures such as radiotherapy, surgery, supportive care programs, complementary therapies or even exercise. In breast cancer, there are clinical trials for a range of treatments (including prevention).

Clinical trials are conducted under supervision by researchers so that the effects of the treatments being studied are properly monitored. Some trials compare new treatment options with current treatments, others look at different ways of using treatments or combining two or more existing treatments to see if they lead to improved benefits for patients. Some trials study whether less treatment than usual can result in similar outcomes.

Why do we need clinical trials?

‘The findings from the trial have been written up and years later I read the outcomes with great interest. The trial established that the optimum results (best survival rates) were obtained when patients were given the chemotherapy regimen I received in the trial.’

We need clinical trials because they help establish whether treatment options are safe and effective. A drug, for example, can look promising in the laboratory test tube where it was first developed. It may even have been applied to laboratory mice with positive results. However, before it can be made widely available to patients, it must be thoroughly evaluated for its effects on people. Common drugs that we take for granted in our lives, such as aspirin and antibiotics, have all been through clinical trials.

Clinical trials play an important role in a research process that can take years before new treatment options become part of standard breast cancer care. Most of the major advances in breast cancer treatment have occurred because the value of new treatments was first demonstrated in clinical trials. Two major advancements include breast conservation surgery as a safe alternative to mastectomy, and the addition of chemotherapy and hormone therapy to surgery to improve survival outcomes. More recent advances due to clinical trials are the use of sentinel node biopsy as an alternative to removing all the underarm lymph nodes, and the introduction of Herceptin for the treatment of HER2-positive breast cancer.

Who runs clinical trials?

Clinical trials are run by teams of researchers at universities, hospitals and private institutions and by drug companies. In Australia, many clinical trials for breast cancer are coordinated through the Australian and New Zealand Breast Cancer Trials Group (ANZ BCTG). The ANZ BCTG program involves more than 500 researchers in Australia and New Zealand. More than 10,000 women have participated in their clinical trials program over the past 20 years.

ANXIETY, DEPRESSION AND BREAST CANCER

FACT SHEET

October 2016 This fact sheet was produced by Breast Cancer Network Australia

Anxiety and depression are common in women with breast cancer, but they are often overlooked and, therefore, undertreated. The good news is that there are effective treatments for both anxiety and depression. With careful management, the symptoms of anxiety and depression can be treated along with those of breast cancer so you can live as well as possible.

This fact sheet provides information on anxiety and depression, their links with breast cancer, treatments available for anxiety and depression, and how to help yourself or someone close to you.

What is anxiety?

Anxiety is more than just feeling stressed or worried. While stress and anxious feelings are a common response to a situation where we feel under pressure, they usually pass once the stressful situation has passed, or ‘stressor’ is removed.

Anxiety is when these anxious feelings don't subside – when they're ongoing and may exist without any particular reason or cause. It’s a serious condition that makes it hard to cope with daily life. Everyone feels anxious from time to time, but for someone experiencing anxiety, these feelings can't be easily controlled.

There are many types of anxiety disorders and many people with anxiety experience symptoms of more than one type.

Living with breast cancer is one of many things that may trigger anxiety.

Anxiety is common, but the sooner you get help, the sooner you can begin to recover.

Signs of anxiety

The symptoms of anxiety conditions are sometimes not all that obvious as they often develop slowly over time and, given we all experience some anxiety at various points in our lives, it can be hard to know how much is too much.

Normal anxiety tends to be limited in duration and connected with some stressful situation or event, such as a job interview. The type of anxiety experienced by people with an anxiety condition is more frequent or persistent, not always connected to an obvious challenge, and affects their quality of life and day-to-day functioning.

Anxiety can be expressed in different ways such as uncontrollable worry, intense fear (phobias or panic attacks), upsetting dreams or flashbacks of a traumatic event.

Some common symptoms of anxiety include: • racing heart

• tightening of the chest

• snowballing worries

• focusing on worry and not being able to distract yourself

• trouble sleeping

• feeling jumpy, restless or shaky.

There are effective treatments available for anxiety.For more information on anxiety and treatments visit beyondblue.org.au/anxiety.

GP MENTAL HEALTH TREATMENT PLANFACT SHEET

December 2016 This fact sheet was produced by Breast Cancer Network Australia

There’s only so much you can talk about with friends and family – you don’t want to overburden them. It was a relief to see a psychologist – I really appreciated her honesty. Friends and family can’t be honest ina way that a stranger can be. – Jenny

Sometimes a diagnosis of breast cancer can lead to ongoing emotional issues that can interfere with your quality of life and your ability to live well and interact with family and friends. This might include anxiety, ongoing sadness, a feeling of hopelessness, stress or depression.

If you are experiencing emotional concerns and you think that you would benefit from some professional ongoing support, you can speak to your GP about whether a GP Mental Health Treatment Plan might be appropriate for you.

The benefit of such a plan is that it allows you to receive up to 10 individual and 10 group alliedmental health services per calendar year that are Medicare-subsidised. This includes counselling and other services such as meditation or mindfulness therapy, which aims to help you to ‘live in the moment’ and deal with day-to-day difficulties. These services can be provided by psychologists, social workers, psychiatrists and occupational therapists.

It is important to know that it is okay to ask for help if you are struggling emotionally. Many women feel relieved that they sought professional support to help them work through some of the fear and worries that they may be experiencing.

For me, the depression was more terrifying than the breast cancer or treatment. It’s rarely spoken about and I struggled on in the mire. – Beth

How can I arrange for a GP Mental Health Treatment Plan?

Your GP can assess your individual circumstances and mental health needs and discuss with you whether a GP Mental Health Treatment Plan is appropriate for you.

It is important that you meet with your regular GPwhen you develop a GP Mental Health Care Plan.Your ‘regular’ GP is the GP who has provided the most care to you over the past 12 months and who will provide the most care to you in the next 12months.

You will need to advise the staff that you need to make a longer appointment than a standard consultation so that you can discuss with your GP the feelings and worries you may be experiencing.

If your GP recommends a GP Mental Health Treatment Plan, she or he can then refer you to an allied health worker who specialises in mental health care.

You will be eligible for six Medicare- subsidised sessions under your plan. If your treating specialist feels that you could benefit from additional sessions, you can return to your GP and obtain a new referral to receive a further four sessions. This would then make up the maximum of 10 that you can claim through Medicare in any one year.

It is the clinical discretion of your referring doctor as to the number of mental health sessions that you will be eligible for under this plan.

LYMPHOEDEMA

FACT SHEET

July 2016 This fact sheet was produced by Breast Cancer Network Australia

What is lymphoedema?

Lymph is a fluid which forms in the body and drains into the blood through a network of vessels and lymph nodes. Lymph nodes filter the fluid, trapping bacteria, cancer cells and any other particles that could be harmful to the body. When the lymph nodes are removed, the body compensates by ‘re-routing’ the lymph through other lymph vessels in the area. However, this system is less efficient. If these vessels are overloaded, lymph fluid may pool in the tissues, causing the swelling known as lymphoedema.

Not all women diagnosed with breast cancer will develop lymphoedema. Current evidence suggests around one in five women will develop the condition.

Why is lymphoedema associated with breast cancer?

If cancer cells have begun to spread from the breast they may be found in the lymph nodes under the armpit. Any lymph nodes which contain cancer cells must be removed. There are two ways of removing lymph nodes:

• Axillary dissection, also known as axillary clearance

• Sentinel node biopsy

Axillary dissection or clearance involves the removal of all or several of the lymph nodes from the armpit. The nodes are examined by a pathologist to determine if any of them contain cancer cells. Your doctor will then use this information to help determine the best treatment for you. Unfortunately, this procedure can place a woman at increased risk of developing lymphoedema.

Sentinel node biopsy allows the surgeon to identify the first lymph node, or nodes, to which cancer cells are likely to spread from the breast. These sentinel node/s are removed during surgery and tested by a pathologist to determine if cancer cells are present. If they are found to

be free of cancer, other nodes are unlikely to be affected and therefore do not need to be removed. If cancer is found in the sentinel nodes, you may have further surgery to remove some or all of the remaining nodes. In a small number of cases, the sentinel node is unable to be identified and an axillary dissection will be recommended.

Sentinel node biopsy is available in most Australian hospitals, although the procedure may not be appropriate for all women.

The risk of developing lymphoedema is lower with sentinel node biopsy as the number of lymph nodes removed is generally less than with an axillary dissection.

Radiotherapy to the armpit can also interfere with the natural flow of lymph, making this another risk factor in the development of lymphoedema.

Swelling and ‘odd sensations’ soon after surgery are not lymphoedema. After surgery, it is normal for there to be some numbness of the armpit, upper arm and the breast or chest wall and there is often some swelling. As the nerves begin to repair, it is also normal to experience a number of odd and uncomfortable sensations, often described as tingling or the feeling that the

SUPERANNUATION AND INSURANCE PAYMENTS FOR PEOPLE WITH A TERMINAL ILLNESS

FACT SHEET

January 2017 This fact sheet was produced by Breast Cancer Network Australia

Early release of superannuation on the grounds of terminal illness

Under Australian law, people with a terminal illness and a life expectancy of less than two years are able to get early access to their lump sum benefits from their superannuation fund tax-free. In these circumstances, you do not need to have reached your superannuation preservation age, or the age of 65, to access your lump sum benefit.

However, you will be required to have two medical specialists involved in your care complete forms thatspecify your life expectancy.

BCNA understands that accessing superannuation early is a sensitive and complex decision for you and your family. Any decision to withdraw superannuation under the terminal illness provision must be done carefully as it could result in you losing insurance benefits that may be attached to your superannuation policy.

This fact sheet has been developed to ensure you have up to date and straight forward information to assist you to make the decision that’s right for you and your family.

Things to consider

Impact on insurance

In July 2015, the Australian Government changed the legislation that allows people to access to their superannuation account balance under the terminal illness provision, extending the life expectancyrequirement from one year to two years. The intention of this change was to make it easier for people with a terminal illness to access their funds earlier should they need to.

Timing can be everything

Although superannuation can now be accessed on the grounds of terminal illness within two years of one’s life expectancy, the same time limit may not apply to insurance benefits attached to a superannuation policy.

At the moment, the majority of life insurance policies attached to superannuation accounts are only payable if a person’s life expectancy is one year or less. This means that if a person withdraws all of their superannuation contributions (often called their account balance or preserved amount) on the basis of a two-year life expectancy, it could causeinsurance policies connected to their superannuation to lapse.

To keep these policies active you will need to leave some money in your superannuation fund so your account does not close. Your insurance premiums will then continue to be deducted.

BCNA understands that some insurance companies are now starting to make policy changes to the definition of terminal illness so it aligns with the superannuation legislation changes. This means that a person will be able to apply for both their account balance and their insurance benefits at the same time on terminal illness grounds within two years rather than one.

While this is good news, it has not yet been adopted as standard practice across the superannuation industry, meaning many insurers are yet to make the change.

Exercise and

Breast Cancer

BEWARE DR GOOGLE: A GUIDE TO RELIABLE BREAST CANCER INFORMATION ON THE INTERNET

FACT SHEET

January 2017 This fact sheet was produced by Breast Cancer Network Australia

I have just learned about the My Journey Kit you send out to help us with our questions and information – it is so much better than Google. – Liane

If you have recently been diagnosed with breast cancer, your mind is probably a whirl as you try to come to terms with what this means for you.

You might be feeling shocked, uncertain and anxious as you wait for test results and appointments, begin talking to your doctors about your treatment options, and share news of your diagnosis with family and friends. Youmay be starting to think about how breast cancer is going to affect your life, and you probably have many questions.

This is often a time when people turn to the internet, looking for information to help support them. While there is plenty of helpful information to be found, there is also information that may be unhelpful, inaccurate and scary. This fact sheet is designed to help you find websites that offer reliable, good quality, online information following your breast cancer diagnosis.

Not all of the information you read will be relevant to you and your specific diagnosis. So if what you read raises questions about your diagnosis or treatment, or if you are unsure what it means, please talk to a member of your treatment team.

Breast Cancer Network Australia’s My Journey Kit

Before beginning to look online for information, you might like to make sure that you have received a copy ofBCNA’s My Journey Kit. My Journey Kit is considered the ‘gold standard’ information package for Australians diagnosed with breast cancer. More than 80 per cent of all women diagnosed receive a My Journey Kit free of charge from BCNA.

My Journey Kit has been developed with input from health professionals, as well as people who have been diagnosed with breast cancer. It provides information to help you understand more about your diagnosis and make decisions about your treatment and care. It also contains information about managing your physical and emotional health and practical matters such as financial and employment issues.

The kit includes many quotes from others affected by breast cancer about the impact of their diagnosis and what most helped them along their journeys.

The My Journey Kit has been a great benefit to me. Even at midnight when something was worrying me, the answer was usually there. – Sarah

More information about BCNA’s My Journey Kit is available on the BCNA website at bcna.org.au. You can order a kit online or by phoning BCNA on 1800 500 258.

HAIR LOSS DURING BREAST CANCER TREATMENT

FACT SHEET

September 2016 This fact sheet was produced by Breast Cancer Network Australia

Because it’s visible to others, hair loss (alopecia) can be one of the more distressing aspects of your treatment for breast cancer.

Your hair may be very much part of your self-image and femininity, so losing your hair can affect your confidence and the way you see yourself. Some women who are about to undergo treatment, and believe that they are prepared to lose their hair, still find it very upsetting when it actually occurs.

You know, I didn’t mind losing my breast as much as I minded losing my hair. I know that might sound odd but it’s how I felt – I cried and cried. Losing my hair made my breast cancer so public. – Sarah

This resource has been developed with input from women who have experienced hair loss as a result of undergoing breast cancer treatment.

What can I do to prepare myself for hair loss?

Hair loss from chemotherapy treatment occurs because the chemotherapy kills not only the cancer cells, but also healthy cells, including the cells in your hair follicles. After chemotherapy treatment is finished, the healthy cells repair themselves and hair grows back.

Whether or not you lose your hair depends on the types of chemotherapy drugs prescribed for you.

Some types of chemotherapy cause complete hair loss, some cause the hair to thin out, while others may have no effect on your hair at all. You may also find that your eyebrows and eyelashes fall out, and that you lose the hair on your legs, arms, underarms and pubic area. This may occur at different stages of your treatment. You can ask your medical oncologist or oncology nurse how your chemotherapy may affect your hair.

On the last page of this fact sheet, you will find a list of common combinations of chemotherapy drugs used to treat breast cancer, along with their likely effect on your hair.

Some women who take the breast cancer hormone treatments tamoxifen, anastrozole, letrozole and exemestane may also experience hair thinning because of the oestrogen-lowering effect of these treatments. However, these treatments are unlikely to cause complete hair loss. Hair thinning usually improves after the first year of taking these medications, though some women will experience hair thinning for as long as they take these medications. If you are still experiencing hair thinning, you may like to discuss with your doctor whether switching to another one of these medications would be possible, as they may not all equally affect your hair.

Being prepared and talking with others about how you feel can help you adjust to the temporary change in appearance. If you have children, it’s important to prepare them also for this change, and to let them know that your hair will grow back. CanTeen provides support and information for young people aged 12–24 who have a parent with cancer, including suggestions about what they can do to help. More information is available through www.canteen.org.au. Medikidz explain breast cancer is a comic book for children aged 8–12.

Men get breast

cancer too

TRAVEL INSURANCE AFTEREARLY BREAST CANCER

FACT SHEET

January 2017 This fact sheet was produced by Breast Cancer Network Australia

After breast cancer treatment, a holiday can be just what the doctor ordered. However, in the past, women have told us that they found it difficult finding travel insurance that would cover them while travelling, because of their breast cancer diagnosis.

More recently, travel insurance options have improved for people who have, or have had breast cancer. There are now travel insurance policies available that provide cover for non-medical related expenses such as lost luggage, and flight cancellations. Some policies may even provide medical cover if certain conditions are met, for example, providing a letter from your doctor outlining the current status of your cancer.

It is important to shop around for a travel insurance policy, and ask questions about what the policy does and does not cover. Reading the product disclosure statement, sometimes referred to as ‘the fine print’, before making a decision can also ensure that you understand exactly what you will, and most importantly won’t, be covered for.

We have produced this fact sheet to help answer some questions you might have about travel insurance after breast cancer. There is a separate fact sheet that covers travel insurance after a diagnosis of metastatic breast cancer.

It took a bit of organising but it was great to get away. You know – sometimes I need a holiday from this breast cancer business.

What is travel insurance?

Travel insurance covers you for specific losses, illness or injuries related to your travel.

Most travel insurance is sold for overseas trips.

While some policies cover domestic travel within Australia, these don’t include hospital and medical expenses because these are already covered by Medicare and/or your private health insurance.

What does travel insurance cover?

Travel insurance policies may cover some or all of the following:

• lost luggage and personal effects• theft of money and goods• cancelled holidays • overseas medical and dental expenses• death and disability allowances • emergency travel arrangements and

accommodation expenses• personal liability• hijacking• legal expenses• rental vehicle insurance excess.

Each policy is different so it is important to think about what cover you want. As with any insurance policy, you will need to read the details of the policy to check it covers the things that are important to you.

Do I have to have travel insurance?

The choice to take out travel insurance is a personal decision. Like any other insurance, travel insurance is optional. You may find it helpful to consider the potential risks if you do not have insurance.

TRAVEL INSURANCE – MAKING A COMPLAINT ABOUT AN INSURANCE DECISION

FACT SHEET

September 2011 This fact sheet was produced by Breast Cancer Network Australia

This information sheet has been developed to assist you if you are considering making a complaint against an insurance company. If you have general questions about travel insurance these should be answered in our Travel Insurance Fact Sheet 1 – for women with early breast cancer, or Travel Insurance Fact Sheet 2 – for women with secondary breast cancer.

‘In 2003 I was refused travel insurance because I had secondary cancer. I wasn’t looking for cover for my cancer diagnosis, but wanted to make sure I was covered for any medical expenses not related to my cancer, and lost luggage, delayed flights etc. After my holiday I lodged a discrimination complaint with the Human Rights and Equal Opportunity Commission (HREOC) who sided with the insurer and dismissed my complaint. I took my case to the Federal Magistrates Court which I won and the insurer subsequently lost on appeal.’

Complaints There are various circumstances which might lead you to make a complaint against an insurer. The most likely is that you are refused cover for your pre-existing medical condition. You might have been granted cover but with conditions you think are unreasonable.

You might have been refused travel insurance even though you have not sought cover for your breast cancer. You simply might want to complain about the way you have been treated through the course of applying for insurance.

‘I had been doing really well. I thought I had got through my breast cancer and was getting back on with life. But when the young woman at the insurance company said to me …. Well you can’t expect us to cover you, you’ve got cancer! I hung up the phone and cried for hours.’

First step The first step in most complaint processes is to let the company know that you are unhappy about a decision or their actions. You can do this by phone or you might prefer to write a letter. It is useful to let them know what outcome you are seeking. This might be that you want them to reconsider and provide you with insurance or that you want to be assured that a staff member understands the effect of their thoughtless words.

Internal complaints process If you are not happy with the result, you can refer the matter to the insurance company’s internal complaints handling process. You will generally have to make a written complaint at this stage, and the insurance company has up to 45 days to respond to your complaint. Almost all insurance companies are members of the Financial Ombudsman Service (FOS). These companies are required to provide you with a ‘final decision letter’.

FAMILY HISTORY

FACT SHEET

December 2016 This fact sheet was produced by Breast Cancer Network Australia

When diagnosed with breast cancer, most women want to know whether their relatives are at increased risk of developing breast cancer. Most women who develop breast cancer do not have a family history. However, women with a strong family history of breast and/or ovarian cancer may be at higher risk.

What is meant by a family history of breast cancer?

A family history of breast cancer is a well-established breast cancer risk factor.

A family history can occur:

• just by chance, because breast cancer is common (for every eight women in Australia, one will develop breast cancer before the age of 85)

• because family members are exposed to similar environmental factors

• and rarely (in around five per cent of all cases)because of an inherited predisposition to breast and ovarian cancer from inherited mutations (faults) in cancer-protection genes (hereditary breast cancer).

Women with a first-degree relative (i.e. mother, sister, daughter) who has had breast cancer, have on average twice the risk of developing breast cancer compared with women with no affected first-degree relatives. The more first-degree relatives with breast cancer, the greater the risk.

It is important to note, however, that eight out of nine women who develop breast cancer do not have a mother, sister, or daughter with breast cancer. While women who have first-degree relatives with a history of breast cancer are at increased risk of the disease, most will never develop breast cancer.

Women with breast cancer are often concerned that their breast cancer was caused by ‘an inherited faulty gene’ that could be passed onto future generations. These breast cancers are known as ‘hereditary’ breast cancer, and they are very rare.

Features that may alert doctors to consider the possibility of hereditary breast cancer include:

• young age (under 40 years) at diagnosis of breast cancer

• a number of first-degree relatives with breast and/or ovarian cancer

• many people on the same side of the family who are affected by cancers such as ovarian,pancreatic, prostate, sarcoma or melanoma

• breast cancer in a male• breast cancer occurring in both breasts• breast and ovarian cancer in the same woman• Ashkenazi Jewish ancestry.

What is my risk through family history?

More than 95 per cent of women in Australia have the average risk for developing breast cancer of onein eight. If you have concerns about your risk because of family history, a simple web-based breast cancer risk calculator can help to clarify whether you have a higher risk than most.

This calculator consists of a set of questions that ask about breast cancer in your first- and second-degree relatives on both your mother’s and father’s side of the family. The two sides are not added together, but considered separately.

BONE HEALTH AND BREAST CANCERFACT SHEET

December 2016 This fact sheet was produced by Breast Cancer Network Australia

Some breast cancer treatments can affect your bone health, particularly the aromatase inhibitor group of hormone therapy drugs. This fact sheet explains the impact breast cancer treatments can have on bone health and provides some tips to help you maintain or improve your bone health during and after your treatment.

I knew that osteoporosis was a risk factor when I made the decision to take an aromatase inhibitor. I do what I can to minimise the risk, such as walking, watching my weight, eating calcium rich foods and having regular checks for my vitamin D levels. It was the right decision for me.

Bone density

‘Bone mineral density’ and ‘bone density’ mean the same thing. They refer to the strength and thickness of your bones. When your bone density is low, your bones are weakened and you are at increased risk of breaking (fracturing) a bone.

For women, getting older and being postmenopausal reduce bone density.

Other factors that may lead to lowered bone density include:

• a family history of osteoporosis or bone fracture• low body mass index (BMI)• smoking• high alcohol consumption• poor nutrition and a diet low in calcium• low vitamin D levels• not exercising enough (particularly weight-bearing exercises)• treatment with certain drugs, including hormone therapies for breast cancer.

Terms you may hear describing low bone density include:

• osteopenia – when bone density is reduced to a level where you are at medium risk of bone fracture• osteoporosis – when bone density is reduced to a level where you are at high risk of bone fracture.

Osteopenia and osteoporosis are sometimes referred to as ‘silent’ diseases because people with these conditions often do not have any symptoms and do not realise that there is a problem until they break a bone.

Breast cancer treatments and bone density

Up to 80 per cent of women diagnosed with breast cancer have hormone positive breast cancer. This means that the hormones oestrogen and/or progesterone, which occur naturally in a woman’s body, help the cancer to grow.

Women with hormone positive breast cancer are usually prescribed hormone therapy. This is a daily tablet taken for five years or more. Hormone therapy drugs work in one of two ways – by reducing the amount of oestrogen produced by the body or by stopping oestrogen from entering cells and being used by the body. These treatments can affect your bone density levels because oestrogen is needed to help strengthen bones.

Healthy Eating and Breast Cancer

Breast Cancer Network Australia

293 Camberwell Rd Camberwell VIC 31241800 500 258 www.bcna.org.au

Menopause and Breast Cancer

SLEEPLESS NIGHTS: BREAST CANCER AND SLEEP

FACT SHEET

January 2017 This fact sheet was produced by Breast Cancer Network Australia

I would wake up anything up to 10 times per night. Even though I could have been there for eight or nine hours, not struggling to sleep and only awake for minutes, I often just didn’t feel like I had slept well. – Christine

Having trouble sleeping is a very common experience. Many people have trouble sleeping at different times in their lives. For people affected by breast cancer, the stress and worry of dealing with a diagnosis, as well as some breast cancer treatments, can make it difficult to get a good night’s sleep.

If you are having problems sleeping, you might be experiencing one of the following issues:

• difficulty falling asleep

• difficulty staying asleep

• waking up earlier than you need or want to

• feeling tired when waking in the morning

• feeling tired throughout the day.

This fact sheet provides information about sleep, tips and strategies that may be helpful if you are having trouble sleeping, and resources and supports that are available.

I remember the nights not being able to sleep. It's like your brain turns on and you start to think too much. – Lyn

What is sleep?

Sleep is made up of a number of stages, which are very different from one another in terms of what’s happening beneath the surface. From deep sleep to dreaming sleep, all are essential for your body and mind.

Each stage of sleep plays a different part in preparing you for the day ahead. Stages one andtwo are light sleep and stages three and four are deep sleep.

Our bodies move between the different stages each night, and to achieve a good night’s sleep you need to go through four to five cycles.

Stage one lasts between five and 10 minutes and starts as we begin to fall asleep. It is a light sleep and you can be easily awakened.

Stage two lasts for about 20 minutes, during which our body temperature decreases and our heart rate slows.

During stage three, the brain starts to produce deep, slow brain waves and we become less responsive to our environment.

Stage four is when we dream and have rapid eye movement (REM) sleep. Even though our brains are working fast and our eyes are moving rapidly, our muscles are totally relaxed.

4.00 am was my wake time during chemo. No matter how exhausted I was, come 4.00 am,that was it! – Karen

FEAR OF CANCER RECURRENCE

FACT SHEET

January 2017 This fact sheet was produced by Breast Cancer Network Australia

Sometimes I think that fear of recurrence is the biggest challenge to face after a breast cancer diagnosis and treatment. It affects us all differently, at different times. – Di

This fact sheet provides information on fear of cancer recurrence for people who have been diagnosed with early breast cancer; their partners, families, friends, and colleagues; and others who support people with early breast cancer.

If you have been diagnosed with metastatic breast cancer, you may like to order a Hope & Hurdlesinformation pack from Breast Cancer Network Australia (BCNA).

What is fear of cancer recurrence?

Many people who have had breast cancer worry that their cancer may one day come back (recur). This is a very normal response to a cancer diagnosis. It is called fear of cancer recurrence: the fear or worry that cancer could come back or progress. It can be a fear of cancer coming back in the same breast, in the other (unaffected) breast, or to another part of the body. Most people who have had cancer worry that it might one day come back.

It may be helpful for you to know that most breast cancers do not come back. Australia has one of the highest breast cancer survival rates in the world, with around 90 per cent of those diagnosed alive five years after their diagnosis. New and emerging treatments mean that survival rates continue to climb.

It may also be helpful for you to know the following about fear of cancer recurrence:

• it is the most common fear in the first year after breast cancer treatment

• between 40% and 70% of people who have had cancer experience fear of recurrence that causes them significant challenges in living their day-to-day life

• the majority of people who experience fear of recurrence find that it reduces with time as they adjust to their life with and after cancer.

Signs that you may be experiencing fear of cancer recurrence

Everyone will feel fear that breast cancer may return differently, and if and how you experience it will depend on your own personal circumstances. Itmight be fears around:• having to go through treatment again: worries

about pain and treatment side effects, time off work or away from things you would normally be doing, and the costs of treatment

• more disruptions to your life and the lives of your family and friends: worries about the stress and upset cancer may cause for the people close to you, and the effect on the lives of others who are important to you

• what it might mean for your family, especially children: worries about their distress, concerns for how a cancer recurrence may affect their schooling or other activities, and thoughts about how your family and children would cope if you were to experience cancer again

• uncertainty: thoughts around not being able to know what the future will be like, and anxiety about not being able to know for certain that your cancer will not return

• the possibility of death: thinking about whether cancer coming back may mean that you might die.

Breast Cancer

and Sexual Wellbeing

Helping a friend or colleague with breast cancer

Metastatic breast cancer: an introduction

I wish I could fix itSuppor t ing your par tner through breast cancer

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Fertility-related choices

A decision aid for younger women with early breast cancer

I’m a nurse and know medical terminology, but when diagnosed, there was heaps in my breast cancer pathology report that I didn’t understand – and it all sounded pretty scary. – Helen, SA

If you have been recently diagnosed with breast cancer, this fact sheet can provide information to help you understand your breast cancer pathology reports, and how these may influence your treatment and care.

If it has been some months or years since you completed your treatment for breast cancer, this fact sheet can help you revisit your pathology reports to understand them better. We have also included information on accessing your pathology reports if you did not get copies of them at the time of your treatment.

Please note that the information contained in this fact sheet is of a general nature. For information specific to your individual situation, you may like to speak to your treating doctor.

What is pathology testing for breast cancer?

A pathologist is a doctor who looks at tissue to see if it is normal or affected by disease. Breast cancer pathology testing is where tissue removed from your breast by a surgeon is examined by the pathologist. The pathologist writes the results of this examination in a pathology report. The report is then sent to your surgeon and/or oncologist so he or she can discuss the results with you, and determine the best course of treatment for you.

A pathologist works in a laboratory which may or may not be located at the hospital where you had your treatment. When your tissue is sent to the laboratory, parts of it are set into paraffin wax blocks and thin sections are taken and placed onto a slide for examination by the pathologist. The remaining tissue in the paraffin block is kept in the laboratory so that further samples can be taken if more tests are required.

What sort of pathology reports will be produced?There are two main types of pathology reports – an initial biopsy report, which confirms whether you have cancer or not, and a breast cancer pathology report after surgery, which provides specific information about your breast cancer.

Your pathology reports will usually be sent directly to your surgeon and/or oncologist. Your doctors can provide you with a copy of your pathology reports, if you would like them.

Initial biopsy reportThe basic aim of a breast biopsy is to determine whether or not a change in your breast is cancer. There are several types of biopsies that can be performed.

Common biopsy procedures include a Fine Needle Aspiration (FNA), where a thin needle is passed through the skin to sample fluid or cells. Another common procedure, a core biopsy, is where an incision or puncture is made through the skin and several narrow samples of tissue are removed. Sometimes, a surgical biopsy may be performed.

BREAST CANCER PATHOLOGY FACT SHEET

This fact sheet was produced by Breast Cancer Network Australia with input from The Royal College of Pathologists of AustralasiaVersion 4, Aug 2013

GLOSSARY OF PATHOLOGY TERMS

FACT SHEET

January 2017 This fact sheet was produced by Breast Cancer Network Australia

The doctors talk to you as if you know the terminology when they explain the results. Because they use them every day, they might not stop to think that women don’t understand these terms. – Julie

Reading your pathology report can be scary and confusing, and the words can seem like a completely different language. In addition, different laboratories may use different words to describe the same thing. We have compiled a list of common terms used in pathology reporting, to make understanding your report a little easier.

Areola – the area around the nipple.

Axilla – the armpit.

Axillary lymph nodes – lymph nodes in the armpit.

Axillary dissection/clearance – removal of some or all of the lymph nodes from the armpit to see if the breast cancer has spread beyond the breast.

Basal-like – basal-like breast cancers are a subset of triple negative cancers.

Benign – not cancerous.

Biopsy – removal of cells or tissue from the body for examination by a pathologist to determine whether or not they are cancer.

Carcinoma – another word for cancer.

Clear margins – (see Margins) – when the edge of the healthy-looking tissue surrounding the tumour is free of cancer cells.

Close margins – (see Margins) – when the healthy-looking tissue surrounding the tumour has cancer cells close to the edge or within it. If the margins are close, further surgery may be required to remove more tissue.

Ductal carcinoma in situ (DCIS) – the most common type of non-invasive breast cancer. It starts in the milk ducts of the breast and is described as non-invasive because it hasn't spread into any surrounding breast tissue (see diagram on page 3). DCIS isn't life-threatening, but having DCIS can increase the risk of developing an invasive breast cancer later in life.

Early breast cancer: breast cancer that has not spread beyond the breast or lymph nodes under the arm (known as axillary lymph nodes).

EndoPredict: a test that analyses 12 genes to predict the risk that breast cancer might recur, as well as whether a person is likely to benefit from chemotherapy or hormone therapy.

Fluorescence in situ hybridisation test (FISH) – a test that is used to measure the number of HER2 genes in a cancer. A cancer with a certain amount of HER2 genes is called HER2-positive. Other methods for assessing these genes are called CISH or SISH.

Gene – a part of the body's code for making new cells and controlling the growth and repair of the cells.

HER2 – a receptor situated on the cell, which is involved in the control of the growth of the cancer cell. These receptors are present in around 15–20 per cent of breast cancers. The pathologist tests for these in the laboratory by in situ hybridisation (FISH, CISH or SISH – see Fluorescence in situ hybridisation test above) using a sample of the breast cancer. If the receptors are present (HER2-positive) it may be possible to block them in some patients using drugs such as Herceptin or Tykerb.

CHRONIC DISEASE MANAGEMENT PLAN

FACT SHEET

May 2015 This fact sheet was produced by Breast Cancer Network Australia

A diagnosis of breast cancer can result in complex care needs that may require you to have an organised approach to your health care that supports not only your cancer related needs but also your overall wellbeing.

GP Management Plans support people with chronic medical conditions that have been, or are likely to be, present for six months or longer. Breast cancer is a condition that fits under this description.

There are two types of GP Management Plans that your GP can prepare for you:

1. A GP Management Plan (GPMP) 2. Team Care Arrangements (TCAs)

These plans are designed to support your overall health care needs and to provide you with access to a range of health professionals who can assist you to manage any concerns that you may be experiencing. The information below outlines more detail about each of these plans.

GP Management Plan (GPMP)

A GPMP can help people with chronic medical conditions by providing an organised approach to care. A GPMP is a plan of action you have agreed with your GP that:

• identifies your health care needs

• sets out the services to be provided by your GP

• lists any other health care and community services you may need

• lists the actions you can take to help manage your condition.

Team Care Arrangement (TCA)

A TCA enables you to have access to other health care providers, including allied health workers, who may be able to provide treatment or services to you. These include physiotherapists, registered lymphoedema practitioners, dietitians, podiatrists, occupational therapists and even exercise physiologists.

Having a TCA in place means that you may be eligible for Medicare rebates for the care provided by these health workers for up to five visits per year, however the care must be directly related to your breast cancer.

Will there be any cost to me to see an allied health care worker under a GPMP or TCA?

A TCA requires your GP to collaborate with at least two other health care providers who will give ongoing treatment to you.

If the health care provider accepts the Medicare benefit as full payment for the service you will be bulk billed and there will be no out-of-pocket costs associated with that care. If not, you will need to pay the difference between the Medicare rebate and the fee charged. You should speak with the service provider first to check what out-of-pocket costs will be incurred.

How can I arrange a GPMP and TCA?

When you make your appointment mention that you want to discuss a GPMP or TCA with your doctor as it will require a longer consultation time than a standard appointment.

It is important that you meet with your regular GP when you develop a GPMP or TCA. She or he will need to work with closely with the other health care workers you may need to see to ensure that you can continue to benefit from the plan and receive

Hormone Therapy and Breast Cancer

PATIENT ASSISTED TRAVEL SCHEMES (PATS)

FACT SHEET

October 2013 This fact sheet was produced by Breast Cancer Network Australia

Patient Assisted Travel Schemes (PATS) provide people in rural areas of Australia with financial assistance towards the costs of travelling to, and staying near, specialist medical services for treatment. The scheme is run by each state and territory, which is why the financial assistance differs according to location.

BCNA has concerns about the adequacy of the state and territory programs to meet the needs of people who require assistance with travel and accommodation costs. To read further about BCNA’s work in this area visit www.bcna.org.au.

This fact sheet provides information about each state and territory scheme, and where to find more details.

Commercial accommodation refers to accommodation that is registered as a business, for example, hotels, motels, and caravan parks. Private accommodation refers to accommodation at a private residence, for example, the home of a family member of friend.

Travel reimbursement scheme

Basic eligibility requirements Travel subsidy

Accommodation subsidy per approved person (patient and approved escort)

Key additional conditions

ACT Interstate Patient Travel Assistance Scheme (IPTAS).

Tel: (02) 6205 3299

Website: www.health.act.gov.au

Current referral for a specialist medical service not available in the ACT.

Private vehicle rebates up to specified amount depending on state (Sydney $101.48, Melbourne $225.50, Adelaide $420.25, Brisbane $462.28).

The costs of the least expensive form of public transport up to specified amount depending on the destination state. Economy air fare where additional criteria are meet.

Commercial accommodation subsidy of $36.90 per night per person. Private accommodation subsidy of $11.28 per night per person.

N/A

NSW Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS).

Tel: (02) 9391 9000

Website: www.health.nsw.gov.au

More than 100 kms one way to the nearest medical specialist. A cumulative distance of 200 kms or more in one week to access specialist medical treatment.

Private vehicle $0.19 per km. The maximum subsidy available for taxi fares (one visit: max $20, 2–7 day visit: max $40, 8–14 day visit: max $80, 15+ day visit: max $160).

Economy public transport fare. Economy air fare where medically endorsed.

Commercial accommodation subsidy of $43 per night for a single room or $60 per night for a double room. Private accommodation subsidy of $20 per night per person.

Non pensioners and those without a health care card must personally contribute $40 toward each return trip (contributions are capped once subsidies reach $1000 within a one year period).

FINANCIAL AND PRACTICAL ASSISTANCE

FACT SHEET

July 2016 This fact sheet was produced by Breast Cancer Network Australia

This fact sheet summarises the financial and practical assistance that may be available to you and your family to help reduce the financial impact of a diagnosis of breast cancer. It includes information on the following topics: Where to start Costs of tests and treatment Making the most of your GP Federal government assistance State government assistance Household expenses Community assistance Superannuation and insurance Employment Child care Travel Legal assistance Where to start

Your hospital social worker or breast care nurse may be able to tell you about any financial and practical assistance you may be eligible for, including information on the services that are available in your state and local area. They may also be able to help you in claiming benefits and assistance.

Costs of tests and treatments

The costs of tests and treatment can vary, sometimes significantly, from provider to provider. It’s a good idea to shop around beforehand as you may be able to find a better price.

I had my surgery and chemo in the private system, but went public for radiotherapy. – Linda

Practical tips

Ask your doctor upfront about the costs of tests and treatment. Think of health care as just another service you pay for, like plumbing. It is quite reasonable to ask for a quote first.

If you have access to a social worker or breast care nurse, she or he can help you find out

about financial and practical support that may be available to you e.g. subsidised accommodation if you have to travel for treatment

If you have a large bill – e.g. for radiotherapy – you can reduce your up-front costs by making the Medicare claim before you pay the bill. Medicare will make a cheque out to the provider for the rebate amount so that you just need to pay the gap amount.

Ask your treating doctor if she or he can arrange for the imaging clinic to bulk-bill you for tests and scans. Your doctor can write ‘please bulk-bill’ on the referral form.

Your doctor can tick the ‘Medicare only payment’ option on pathology request forms, even if you are being treated as a private patient. This will reduce the out-of-pocket cost of your pathology tests.

As a public patient

You are entitled to be treated as a public (Medicare) patient in a public hospital even if you have private health insurance; however you must let your doctors know upfront.

Advantages

You will not be charged for most of your treatment and care.

You are more likely to have a multidisciplinary team (MDT) coordinating your care.

You are more likely to have access to a breast care nurse, social worker, physiotherapist and other allied health professionals.

You are more likely to have all of your treatment team in the same place.

Disadvantages

You will be treated by doctors nominated by the hospital – you cannot choose your doctors.

You may see many different health professionals during the course of your treatment.

You may have to wait longer for appointments and treatment, but this should not affect the outcome of your treatment.