Founder of charity Make 2nds Count Lisa talks about her secondary breast cancer

That was February 2018. I had been living with stage four breast cancer since May 2017. To say that life since that point had been ‘testing’ is an understatement. Diagnosed ‘de novo’ (stage 4 from the outset) with breast cancer which had spread to every bone in my skeleton at the age of 33, I was in the midst of constant chemotherapy, scanxiety and surgeries to prolong my life.

My medical team had thrown everything but the kitchen sink at me to stabilise the progression of the disease. To buy me more time. To give me some quality of life.

Brain involvement had never even crossed my mind until that point. I had put my increased forgetfulness and inability to spell words properly on a text down to ‘chemo brain’. This was all new to me, my body was struggling to deal with the cumulative treatment that infused my veins. I didn’t know what side effects were causing what.

As the frequency of the headaches increased and the pain they caused intensified, I contacted my oncologist who arranged for an immediate MRI of my brain. That’s when I heard those five words.

The following week was one of the longest of my life. I don’t think I even left my bedroom. Family rallied around to look after my wee boy and to allow my husband and I time together. We spent most days lying on the bed binge watching ‘Peaky Blinders’ – for those of you who have seen this series, I think it pretty much reflects our mindset that week. Let’s just say it’s not quite Mary Poppins.

I was being prepped for a craniotomy or, in layman’s terms ,‘open brain surgery’. You know that it’s a serious operation when your partner is allowed into the operating theatre to watch you being put off to sleep.

Thankfully they were able to remove the tumour - all 6cm of it (around the size of a golf ball was how my surgeon put it). Post recovery radiotherapy was on the cards and this took the form of stereotactic radiosurgery (Cyberknife). I count my lucky blessings that my husband has medical insurance which covered this procedure as there is no Cyberknife machine in Scotland. Food for thought as Scottish patients still get brain tumours and this machine can prolong and save lives.

As life got back to ‘normal’ and chemotherapy commenced once again, my ‘regime’ was changed and I was moved on Capecitabine (oral chemotherapy), being one of the few treatments currently available which are thought to cross the blood brain barrier. To this date I still remain on Capecitabine (cycle 37) which is good going, yet I know it won’t be forever. Breast Cancer Now statistics show that up to 30% of patients with stage four breast cancer develop brain metastases. We urgently need more targeted treatments for brain metastases.

The fellowship awarded by Walk the Walk to Dr Damir Varešlija will play a significant role in potentially developing future treatments for patients like myself living with brain metastases. Giving hope, focusing on secondary disease and making secondary patients count.

Lisa Fleming - Founder of Make 2nds Count

@secondarybreastcancerandme

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