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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. 

 

Supporting our sister

Our family story

Our sister Robyn (centre front of photo) is battling stage IV breast cancer. Robyn is the eldest of us five girls (plus we have one very out-numbered brother).

We all recently went on a holiday to Palm Cove in north Queensland. This photo shows us all in our Breast Cancer Cure T-shirts by New Zealand designer Andrea Moore.

Robyn had her first breast cancer diagnosis in 2004. This was shocking news, but in some ways not totally unexpected. You see, our dad was one of 12 children, so you can imagine the huge number of cousins, aunts and uncles that we have. Over the years, we would far too regularly receive the news that this cousin or this aunt had been diagnosed with either breast or ovarian cancer.

Was this just a coincidence because we are such a large family? One of our doctors suggested that maybe some genetic testing might be in order.

Yes, our huge and wonderfully diverse family had won that dreadful genetic lottery that could predispose us to breast and ovarian cancer. We continue on with our lives, albeit on high alert to try and stay one step ahead of this disease that is indiscriminate in who it is going to target next.

Sadly, even with all the best surveillance by her medical team, in 2009 Robyn received another diagnosis of breast cancer in her remaining breast. She now has metastases in her liver, but she continues to fight as hard as she can. Every time she is knocked down, she continues to get back up!

We don’t want our family reunions to be tinged with the sad fact that this disease has won again. We are all so hopeful that a cure can be found. Until that magical day comes, may we all walk beside every single woman living with breast cancer and do what we can to make their journey just that little bit easier.

Desley, Carolyn, Kerrie and Vicki

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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