There is still room for hope with a secondary breast cancer diagnosis

When I heard my cancer was incurable, I thought that was it for me 

My journey started in late 2012 when I was diagnosed with primary breast cancer that had spread to a couple of lymph nodes. I had surgery, chemotherapy, radiotherapy, Herceptin and tamoxifen. I also underwent an elective double mastectomy and reconstruction. After two years, I was discharged and told to come back if I had symptoms. I had no scans or check-ups after that. 

In 2017, just short of my ‘five years clear’ milestone, I was diagnosed with secondary breast cancer in my liver. I thought I was just run down, especially as I’d recently lost my father. As it turned out, 30% of my liver was taken up with tumours, plus I had some tumours in my bones.  

The moment I heard, ‘inoperable and incurable’ I thought, ‘That’s it then’. But it turned out I had treatment options – and with options comes hope.  

So, I had more chemotherapy and more Herceptin, plus daily pills and monthly injections. I was delighted to be offered pertuzumab, the star treatment at the time for HER2 positive cancer, but I had an allergic reaction to it so Herceptin alone was my best hope. And, thankfully, it worked, and continues to work brilliantly at reducing and controlling my tumours.  

I don’t want sympathy – just empathy  

Last year, at the start of lockdown, I had a fit while running. An MRI showed I had multiple tumours in my brain – I’m still blown away by that thought, especially as I had no notion that they were even there. Again, I thought that was it for me. But I still had treatment options, so I still have hope.  

I’ve had one round of whole brain radiotherapy and two of the more targeted Gamma Knife radiotherapy. So far, we’ve seen tumours shrinking and disappearing while my cancer remains under control.  

I noticed with a secondary diagnosis that people did the ‘bless face’: a tilt of the head, a sympathetic look, often accompanied with ‘bless’. I realise they mean well and it’s very difficult to pitch responses to bad news, but I don’t want sympathy – just empathy and perhaps a willing ear.  

So much time is focussed on stopping primary breast cancer becoming secondary that you begin to feel like you’re at the bottom of the priority list. The unwanted by-product. The lame duck. The unsurvivor. But I have an amazing oncologist, surgeon and oncology team who make me feel incredibly valued, and not a lost cause. Plus, I have an ever-optimistic and huge network of family and friends to bolster me when needed. 

My support network has been brilliant  

Having a diagnosis like mine during lockdown is incredibly hard, even for someone who knows the ropes as well as I do. My boys immediately self-isolated then came home so I wasn’t alone, but I know many people didn’t have that same luxury.  

My support network has been brilliant; I am so lucky in the family and friends I have. And through virtual meetings and long phone calls I’ve really felt that support. But it’s been very isolating and frightening at times.  

I’m a member of a local support group and we’ve had lots of virtual events: talks, mindfulness courses and physiotherapist sessions, for example. I’ve also walked – round my garden while shielding and then in parks as things eased. I do monthly lockdown challenges that award me medals – I’ve got five so far!  

I was 6.2km into a 10k run when I had my fit, so I missed out on a medal. I wrote to the organisers and asked if I could complete it by walking the final distance and they agreed – I was never so proud of a medal! Exercise keeps me sane and I firmly believe it’s helped me get through what can be gruelling treatment.  

There is still room for hope 

Having breast cancer can be an isolating experience at any time and it is crucial that we, as patients, get our voices and experiences heard. We're a multitude of voices – all different but with commonalities that bind us together – and it’s only through listening to others that we can truly understand the effects breast cancer has, physically and mentally.  

For my part, I’ve been a Patient Advocate for Breast Cancer Now, as well as a member of Breast Cancer Voices. I’m also the Patient Rep on the Science Strategy Committee, so I see first-hand the amazing research that is out there. These roles have been both rewarding and made something more positive come out of my diagnoses.   

I have discovered over the past three years of living with secondary breast cancer that there is room for much hope. There have been many challenges, but there have been many high points too.  

I have travelled, I have run races and seen an eclipse. I have enjoyed time with my friends and family with renewed clarity. I try to find something every day that reminds me how lucky I am to still be here, to still have options and to still be myself. I have incurable secondary breast cancer, but I am not yet terminal. And, for that reason alone, I am extremely lucky.