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Personal stories - metastatic breast cancer

When we hear that breast cancer has spread, it usually comes as a great shock. As you face this difficult time, we want you to know that there are women living full and meaningful lives despite having metastatic breast cancer. 

A few women have kindly offered their stories, messages and poetry here in the hope that they will give you the inspiration to live your life with hope and determination. 

You can navigate to each story by clicking on the links below.

Speaking from experience – women with metastatic breast cancer share their stories

Speaking from experience is a video series produced by BCNA in collaboration with patient education service Healthily.

In the three videos, the women speak on a variety of topics – from the shock of initially being diagnosed, to treatment side effects and employment. The women share how they live full and meaningful lives despite the many obstacles metastatic breast cancer brings.

You can read more about each video and watch below.

Seeking information

'I don’t care what it costs or what it takes, I need to sit in a room with other people and hear their experiences.' – Brenda

In this video, the women talk about how BCNA’s resources and information forums have been a source of guidance and strength after their metastatic breast cancer diagnosis and beyond.

They also stress the importance of seeking credible information when making decisions about treatment and care.

Living with metastatic breast cancer

'I think it’s been a good thing to change the way I live my life … I find it much easier to focus on what is really important to me.' – Fiona

The women talk about how priorities shift after a metastatic breast cancer diagnosis. Some women share how work continues to bring meaning and purpose to their lives, while another speaks of how the diagnosis prompted her to spend more time with family.

Words of wisdom

'I just do the best with what I have and I think that's all anybody can do.' - Wendy

Metastatic breast cancer can bring about fear and uncertainty. The women share messages of support to reassure others that they are not alone, and provide advice for dealing with what can be a challenging time. 

Filling up my happiness cup | Kim, NSW 

Kim

When I was diagnosed with metastatic breast cancer over six years ago now, one of the things that concerned me was that I would have less opportunity to learn and grow. However, I found that the learning has continued, but in a different light. I hope some of my thoughts might help you.

Don’t let anyone limit you but yourself – and argue strongly with yourself!

My nearest large town is an hour’s drive away and, as driving fatigues me, for a whole year I was convinced I could no longer drive there by myself. Circumstances arose where I had to make the drive, and I found I could manage quite well.

Now, about three years later, I can still drive myself in and out as long as I find a quiet, flat street to have a nap in the car before I drive home.

Recently I thought that I couldn’t swim freestyle in my local bay anymore, as my breathing is poor. On Saturday I did 30 strokes in a row.

I’ve found it really important to try something before I say I can’t do it, as I have often been wrong. Nobody puts baby in the corner but me, and I need to be argued with!

Gather around you as much support as you can – but at your invitation only

I am sure you all know how important it is to find people who support you, – be it family or friends – and it may surprise you just how many people do care and want to help. I have moved around Australia and worked in more than 25 different places, finding caring and supportive people in every workplace.

I truly believe that there are many more people than we realise who would support us, but make sure it is on your terms. One woman I met only twice gave me a five‐minute speech about how excited she was to make this journey with me and how she was so looking forward to all that she was going to learn.

Excuse me!? I didn’t invite her on my ‘journey’ in any way whatsoever and I don’t care how she thinks it will benefit her! Sometimes there can be an onus put on you to let people in so that they can learn or feel or whatever it is. My metastatic cancer is not for their benefit!

This ‘journey’ is my dance with cancer, only I know how to dance it. While I need people to dance with me, only I can take the steps. Back off!

Learn to say ‘No’, again and again and again (I’m still learning!) and don’t feel guilty

As you would know, when you don’t look unwell, people assume you can cope. I am constantly amazed by how often people expect me to do more.

No, I won’t join that committee that is known for being fraught with politics and fighting. Do you want to spend your limited days in that atmosphere?

No, you can’t come and stay then or for that long, even though that is the only time that suits you, because I will not cope!

That is a lovely invitation, but I have said ‘No’ twice already and, for the third time, ‘No’ (I find three times seems to work)!

‘No’ you can’t dump all your troubles on me, leave without giving back and remain my friend.

I do still like to hear other people’s problems (this cancer thing gets so boring), but it has to be both ways now. It upsets me that many people who know my circumstances aren’t more sensitive to my needs. Being upset is not going to stop them, so instead I say ‘No’.

Dine out on all those rude and/or insensitive comments

Anyone who knows me has heard the story of the woman who phoned from a charity. When I told her that I prefer to donate to cancer research as I have metastatic cancer, she responded with ‘Well, I hope you can learn how to be more positive.’

I was dumbstruck – literally – which allowed her to continue with ‘I hope you can find a support group that will teach you how to eat right, exercise properly and how to develop a more positive attitude.’

I hung up on her, cried my eyes out more than once, and eventually rang the charity to put in a very strong complaint.

However, I have now dined out on that story and many others for several years. The problem lies with the person who made them, not me and I love to marvel at how they somehow thought they were being helpful. It takes time, but do your best to laugh at them.

It’s not the retirement I was thinking of, nor at the anticipated age, but it is the only one I’m going to get

I have tried to look on this time as my retirement time, and do as much as I possibly can that I would have liked to do in my real retirement.

So my husband and I have travelled, I’ve joined the local choir, book club, yoga, aqua aerobics, swimming, volunteered at a local nursing home, regularly go to movies with my ‘movie mate’ and have researched my family history.

Sure, there have been limits on what I hoped to do, things I couldn’t and times when plans just didn’t work out, but I have really enjoyed all of those activities and it has taken my focus off the bloody cancer.

I have recently lost my voice, so I have had to put the choir aside and take up the ukulele! Of course, I often have to say I can’t come, but that is why I’m not on any committees. I have found distraction to be really necessary and that it helps to replace each loss with a gain of some sort. Go out there and have fun!

As my wonderful counsellor often has to remind me, you have to constantly find ways to fill up the ‘happiness’ cup in preparation for those inevitable times when you have to drink from it.

My fellow members of Cancer Council’s metastatic breast cancer telephone support group definitely help to keep me topped up.

Of course there are those incredibly dark and understandably teary times when nothing really helps. However, I hope that sharing some of my survival tips will help you and that your cup remains as full as possible.

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Palliative care is looking out for me | Karen, VIC

Karen 

I have been living with cancer for 10 years. I have bone and brain metastases, which are stable.

This year has been my biggest challenge, with fractures occurring in my femurs due to a side effect of a bone density drug. Consequently, I now have rods in both femurs and endured two major setbacks due to refracturing around the rods. I have been in a world of pain, and while I was in care in hospital, I was referred to my local palliative care organisation.

Even though I haven’t had another acute incident, I know that my body is starting to break down and I’m comforted and relieved that palliative care is looking out for me to help me manage pain and symptoms so I can continue to live life as well as possible.

This service is free and involves a multidisciplinary team. Thus far I have met a nurse, social worker and occupational therapist. I haven’t needed them yet, but it’s so good to have them if my illness progresses.

I see them as an extension of my medical team at home. They have brought up issues in relation to developing a health plan and end of life plan for me and my family. It was done in a very compassionate way and has seeded the thought of organising the next phase in my journey to reduce the trauma for my family and myself.

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Where is the bright side of metastatic disease? | Belinda, NSW 

Belinda

I wish this was a story about how cancer changed my life for the better, or of being a survivor, but alas, this is not one of those stories. This is my story, a story about being in the 5% who won’t survive, and the even smaller percentage of those who are young.

I was originally diagnosed with early breast cancer two weeks after my 36th birthday in 2013. Caught early, the tumour was only 1.5cms, and no lymph nodes were involved. The reaction of the health staff, remarkable. A lumpectomy, radiation, and hormone therapy ensued, and after 12 months’ life went back to being relatively normal, although awareness was much greater. My circumstances convinced me to share my story, and soon after my treatment I volunteered my time as a support group facilitator for young women with breast cancer.

2016 was always going to be a different year. An emerging relationship, an awesome skiing trip to Aspen, I was quite literally, on Cloud 9.

I had always had back and neck pain, and the pain in early January/February didn’t seem any different. By July, soon after my 39th Birthday, and a quick trip to Thredbo, three years post my initial diagnosis, I was unusually tired, had developed shortness of breath and my neck pain had extended down my arm. With my awareness, concern and several scans came the news that I didn’t want to hear on the 1st September. The cancer had spread to my spine, my T1 vertebrae to be precise. It had been decimated by a tumour, which was pressing on my nerve. My whole world as I knew it quickly turned upside down. Emotions ran high, but my being here before got me ready for what needed to be done. I was quickly given two weeks of radiation treatment and referred to a Neurosurgeon in case I needed emergency surgery on my spine.  

What a lot of people do not know, is that the most effective treatment for estrogen positive breast cancer is to remove the estrogen from their bodies. For those of us who are not post-menopausal, we are very quickly thrown into that state. After a short course of Zoladex, a more permanent solution was taken, and in November I had my ovaries removed. Personally, for me, this was one of the most challenging and difficult decisions of my life, but I kept telling myself, it’s what is needed to be able to live with metastatic breast cancer. Post treatment, I have had difficulty sleeping. The ability to sleep thoughout the night without been woken by a hot flush seems a distant memory, one that I dearly miss. I want to say that I am brave, that I took all this in my stride. In part, I am brave, it’s hard, and difficult, and you do what you need to do to survive.  The beast that is cancer doesn’t play by the rules, so drastic action is often required, and sometimes before you can fully come to terms with the challenges. 

After the operation, I began taking an aromatase inhibitor. The AI has made my joints ache, so I feel like I have arthritis when I rise in the morning. As the tumour is in my spine, I have a monthly injection of Xgeva which strengthens the bones, but this too causes further bone pain.

I’m sorry if I sound negative, but to date, the journey has not been without it’s challenges. 

I am lucky enough to have been put on a trial of the drug Palbociclib as this is not available on the PBS in Australia, although it has been approved for use in 52 other countries. This drug will hopefully give me more time to do all the things I want to do in this lifetime. While I am so very grateful to be on this drug, it also comes with significant side effects. The combination of all these drugs makes me so tired I can hardly get out of bed in the morning and is playing havoc with my memory.

I think the biggest thing I am currently struggling with is adjusting to the new way I need to live. While side effects are one thing, it’s difficult to understand the impact it can have on your life in general. I used to be an energetic and active person. My favourite hobby is skiing, I like to ride my mountain bike, play tennis, yoga, swim, and go to the gym. I have a senior role in a large organisation. I had just begun a new relationship and loved travelling, going out for dinner, and drinks with my partner and my friends. 

It makes me sad coming to terms with not being able to do some of these things, although, against doctors’ advice I did go skiing last February, in Aspen, while it was awesome to go back again, it did create a new awareness that I am no longer able to do as much as I used to…coming to grips with the fact that this is now permanent scares me. It’s not going to pass like a cold or flu, it’s going to continue to get worse. I know once I better accept this I can learn to be happy, and I understand that I am currently still able to do a fair bit.

I am grateful for all the people out there who have been a lifeline and support to me, and all those I have met who want to help. It gives me faith in society and makes me smile. The impact this has had on my relationships has been challenging. I keep asking myself why would anyone want to be in a relationship with someone like me, going through this battle.

 I let these thoughts get to me, and sometimes I think it would be best to be alone, so that others don’t need to watch me go through this…but I know those that those who matter love me and will be there for me…until the very end.

I don’t think there will be a cure in my short lifetime, but it makes me glad to know that those impacted by this awful disease in the future may benefit from all that is being done now by organisations such as BCNA.

In the meantime, I’ll enjoy the time I have left. I’m looking forward to a girl’s trip to Europe with mum, and a skiing trip to Aspen next year. 

Although there is no cure for metastatic disease, it will have to hunt me down and knock me off my skis before it gets me…

#tengoodyears

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The need and desire to continue working | Kari, QLD

Kari

I can’t exactly remember what the order of my first few thoughts was when the surgeon told me the results of my lumpectomy, but I do know “How will I fit this into my work roster?” was right up there at the top.

I am employed on a remote mine site on a fly-in fly-out roster.

I’m not in a managerial position, nor do I wish to climb a corporate ladder, but I have always worked and have a very strong work ethic.

Besides the practical – being the major wage earner since my partner’s three children came to live with us full-time five years ago – there was also the worry of how I would stand to be at home on sick leave full-time and not go insane without having the week break from it all!

I couldn’t get work out of my head, even though everyone told me that was the least of my problems.

Nearly six months on, I have started to make return to work plans with my supervisor and I haven’t lost my sanity.

I do suspect the kids are going to miss me a lot more than I will miss them.

Different feelings are now creeping in: how much has changed out there? Will my relationships with workmates still be the same? Am I going to handle working long hours again? Has the chemo really affected my brain?

It concerns me not only that I am going to be treated differently by others, but that I may actually need to be treated differently.

If nothing else, metastatic breast cancer has forced me to act on something I have been tossing around for a long time – an exit strategy from the mining lifestyle. I have started a diploma course online with the hope that it will help me secure employment back in the “real world” if/when I have to.

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The balancing act | Christie, VIC

 

Christie and Paul Wood

As I approached five years clear of my initial breast cancer diagnosis, I never thought I would hear those words again. After some back pain, I headed to my GP. She sent me for a bone scan to see what was going on. A week later, I got the call to come and see her straight away. We both sat in shock as she told me my cancer had returned. This time in my spine.

I drove home in shock. I had to tell my husband; that was the hardest. We also had to figure out when was the best time to tell our three boys. We decided to wait until we knew exactly what we were facing.
Living in a rural/regional area made things harder. My local radiotherapist referred me to Melbourne, where we planned to have stereotactic radiotherapy to my T8 vertebra.

My husband Paul and I had told our boys – 13, 11 and eight – that mummy’s cancer had come back but we were going to treat it. We believed that honesty was the best. We didn’t want them to be scared that mum was having lots of doctor’s appointments again.

With the radiotherapy completed, Paul and I were called back to the doctor’s office. We learned there were more “spots” on my spine and we would have to see our team to decide on the best treatment options. The drive home was an emotional three hours.

My local oncologist wanted the best treatment options. My cancer was aggressive triple negative so he referred me to his colleagues at Peter MacCallum, East Melbourne. It was there I became involved in a clinical drug trial.

My new oncology team were keen for me to participate in a clinical trial. I did not know what this was to entail. I travelled back and forth to Melbourne (a five-hour round trip) to begin the process of becoming a participant. I met with a professor who guided me through. Again, I had a barrage of tests including MRI, CT, bone scans, a PET scan and a bone biopsy. These showed we were now treating multiple bone mets and a spot on my liver. Her team armed me with lots of information. I received a consent document about 45 pages long! I had to read and note any questions before signing up. I had lots of questions!

Was I making the right treatment choices? Was travelling to Melbourne the best for my family? Was my cancer going to be treated right? Could I have the same options of treatment at home? Would my family cope with me being away every week? Was I getting the drug or the placebo? At this time, my trial was open to recruits in six hospitals around the world and about 48 people were participating.

I weighed up the pros and cons and decided I was going to sign up. It was my choice completely and I could pull out if I wanted to. What did I have to lose? If the drug worked, it could give me more precious time with my family. If it didn’t, I was being monitored closely and we could then make other choices.

So, in November 2015, I finished up full-time employment and embarked of my new adventure, the Impassion 130 trial. I was about to start six months of active treatment – chemo and a trial drug. Every Monday I travel the five-hour round trip to have my drugs administered. My husband has been by my side every moment. Our children came along during school holidays and on “special” days off with mum. On top of the drugs, I have regular scans to see if things are working, and a lot of blood tests! I also fill out regular surveys, which ask me about my wellbeing and lifestyle during the clinical trial. I have an amazing nurse who is only a phone or email away if I have questions.

Keeping a normal life can be tough. Everyone knows I’m sick, but I want everything to stay the same! Other than the hair loss and some tiredness, I’m still me. This is why I chose to go back to work and I continue to do everything I used to do. I ride my bike, I go to school and volunteer with my children. I drive my boys to sports and enjoy every minute.

People tell me I am inspirational or amazing. But I’m just a mum who is doing her best to spend quality time with her family. It is a balancing act, but I’m making the most of life. My small sacrifice being a participant in a clinical drug trial will hopefully help myself, and lots of others.

I am scared for what my future holds but I’m also hopeful that through these drug trials there will one day be a cure for metastatic breast cancer and no woman will have to go through the balancing act of life with cancer.

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How lucky am I? | Margaret, NSW 

Margaret and her granddaughter Aleigha

Margaret and her granddaughter Aleigha

Being diagnosed with breast cancer in early 2009, I survived 11 months of surgery and treatment and returned to work a very grateful woman. Since then I have semi-retired and was again diagnosed, this time with metastatic breast cancer in January 2016.

My struggle and fight with cancer continues with the love and support of my loving family. Many a scan, nuclear imaging, infusions and countless blood tests – I’m back on the medical bandwagon.

In 2013, I was fortunate to become a grandmother of a beautiful granddaughter, Aleigha (meaning ‘sublime’). This little treasure in my life has made me appreciate being alive, and being able to see her grow up is very special to me. My wish is for her to have good, joyful memories of her grandmother for the rest of her life.

I wrote the following poem in my journal when I was first diagnosed and it is just as relevant now.

My senses to life revisited – what is important to me

stop to smell my favourite flowers,
I take a break and listen to the music that I enjoy,
I treasure the scenic beauty of the Blue Mountains where you live,
I always enjoy the taste of the food and wine that lifts your spirits when I’m down,
I look after my sense of mind, body and soul,
I use humour to get me through my toughest moments,
I talk, listen and laugh with my family more often, and
Most of all, I touch, kiss, hold and hug the ones I love.
I appreciate being alive.

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The upside downside of dealing with metastatic breast cancer | Margaret, NSW 

Margaret also wrote the following poem following a particularly bad day after an infusion:

The major downside is being diagnosed with MBC in the first place, :(
The upside is having loving and caring family and friends that will help you keep a bright face.

Another downside is having to be strong when treatment and medication leaves you in a state of ill-being,
So, the upside is knowing that the smallest spark of delight or pleasure will raise you right back up into a happy-being,

The ever ending downside is having to add this burden to your strife,
The upside is being strong, happy and positive in everything that you do in your life.

There is also the downside of wondering if , when or where the big 'MBC' will be discovered next...
So, the important optimistic upside of this is hoping that it disappears completely before the next test. :)

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I'm a man, and I have metastatic breast cancer | Rob, NSW 

'Men get breast cancer too, and we just want to be part of the conversation' - Rob

Rob was diagnosed with metastatic breast cancer when he was 57 years old. He believes his diagnosis of metastatic disease was the result of being diagnosed with breast cancer late, and he puts this down to a lack of awareness that men can get breast cancer too. Rob shared his story for our Breast cancer doesn't discriminate campaign in 2016. 

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