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Lu’s Story

03 May 2020 by Krystal Barter
Lu’s Story

When it comes to breast cancer, both my mother and grandmother had been diagnosed in the past and beaten the disease. I had always had ‘lumpy’ breasts and whilst I am not a carrier of the BRCA gene, over the years, I had regular scans to keep an eye on things.

Around the time of my diagnosis, I was not long out of an abusive relationship. At the time, I thought some of the pain was underlying due to my previous situation. However, when the pain and tenderness did not subside, I went to see my regular GP.

At this stage, my GP was able to identify that my lymph nodes were incredibly swollen – in fact, under my arm, some were the size of a golf ball. I immediately went for scans and was diagnosed with breast cancer a week later, starting chemo shortly after.

Through a series of body scans, I found within 6 months of my initial diagnosis the disease had spread to my bones. My care team have also recently discovered some new spots on my lungs, however they are currently too small to biopsy so they will investigate further in 3months time.

A silver lining is that due to the body scans, markers for renal cancer were picked up early, and I have actually already beaten that. However, all in all, I do still have metastatic breast cancer, and this is something I am living with each day.

To date, my treatment has included chemotherapy, a double mastectomy, radiation and targeted therapy, which I am still receiving.

 

Health literacy and metastatic breast cancer

When it comes to healthcare, asking questions is not my forte. However, with metastatic breast cancer, I have had no choice but to arm myself with information. Whilst everyone will digest information their own way, below are a few key things that have worked for me.

Having a support person attend appointments with me

  • Medical appointments can be extremely overwhelming and often the detail can be lost in the moment. To help avoid this, I try to always have a support person in meetings with my specialists, like my breast care nurse, my mum or my sister. It is very rare I will ever go into an appointment on my own.
  • I found my breast care nurse to be extremely helpful in assisting me with digesting information after the appointment, or even asking questions throughout an appointment which I never thought of asking.

 
Avoid Dr Google and researching topics outside of what is relevant

  • Google can be a scary place for people with cancer. In the beginning, I found myself looking into the side effects of chemotherapy and scaring myself in what might happen.
  • The reality is, yes, chemo is awful, but not all patients will experience the same set of side effects, so try to avoid being pulled into the negative hole that irrelevant Google searches can present.

 
Finding the right support groups and resources

  • As a patient with metastatic disease, I found some assistance via breast cancer support groups. It felt nice to ask questions like ‘is this normal’ to other people who might be going through something similar.
  •  I also relied on my breast cancer nurse to provide me with new, up to date resources about metastatic disease, because often breast cancer information can be geared towards those with earlier stages of the disease.

 

 

Helping others to understand metastatic disease

There is no such thing as ‘just’ having cancer, but I think it is important we help other people realise, there’s “standalone” cancer (primary cancer in one part of the body) and there’s metastatic cancer (when the primary cancer spreads to other parts of the body).

Metastatic is not a term widely used in the public and that is a problem. For people like me, it often means I’m in conversations where people are (kindly) suggesting that I’ll be OK, and that I’ll ‘beat’ breast cancer. The reality is, I won’t.

Whilst we do not communicate it, metastatic cancer is terminal and while I do my best to stay positive in the day-to-day, it is incredibly frightening to think about what this means for me.
When it comes to health literacy, I think there’s more information that can be shared both in the ‘pink’ communities and generally about metastatic disease. As we know, there are many shades of pink, and mine just happens to be made up of a few.

Whilst we cannot change the reality that terminal cancer presents, it would be wonderful to inform more people about it, so that we can engage in positive, relevant discussion and in doing so, educate the wider community.

 

Message of Hope

Throughout my cancer journey I have made some invaluable friendships. I think it is really important to try and find the silver lining. I am more me than I have ever been since being diagnosed with cancer and strangely, I have never been more confident.

I try and remain positive, knowing that things are changing so quickly in terms of treatment. I focus on surviving with the support of my current treatment and hope for the next one.

Lastly, remember to acknowledge that some days are hard and that there is a place for dark days and bright days.

I was never much of a crier, but I have found it to be very cathartic, so when you need to, just let it happen.

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