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I may have secondary breast cancer, but there are still so many things in my life that make me feel lucky

Anna lives with secondary breast cancer in her liver, bones and brain, but she's found ways to gain control over her situation and adapt to her 'new normal'.

Anna is 54 and developed primary breast cancer 10 years ago, secondary (liver and bones) five years ago and secondary in the brain two years ago. She is currently Breast Cancer Now’s Patient Rep on the Science Strategy Committee and a member of BCN’s Patient Voices and Experience Panel. She has degrees in Psychology and in Biochemistry.

I have found a voice that is so often lost with a cancer diagnosis

My name is Anna. I’m a single mother, a scientist, I love to travel, visit the theatre and run - and I have secondary breast cancer in my liver, bones and brain.

I’ve had many treatments over the 10 years I’ve had cancer and I will continue to have treatment for as long as I can. Because as long as I have treatment options that can keep my cancer stable, I have hope.

I’ve been working with Breast Cancer Now since 2015. Through my work as a Patient Advocate, and now as the Patient Representative for the Science Strategy Committee (SSC), I have found my own voice and a sense of control so often lost with a cancer diagnosis.

With the SSC, I see the extraordinary research that’s going on and how it can, and does, benefit patients in the real world – it’s not all about lab work and theories. Breast Cancer Now funds about a third of all breast cancer research in the UK.

I’ve also been able to add my voice to campaigns for new treatments – for the last two years I’ve been working with Breast Cancer Now to try to get a novel drug called Tucatinib approved for use on the NHS. Most drugs cannot get in to the brain, but Tucatinib can to great effect, which is something especially relevant to my diagnosis.

Through my work with Breast Cancer Now, I feel valued and have found a way to make something positive come out of a largely negative experience. Through Breast Cancer Voices, I hope that others will find a similar sense of purpose and know that their own voices matter.

I feel so proud of the work I've done to support others with breast cancer

Everything had been relatively stable up until about two months ago, at which point I reacted badly to a new treatment and ended up having several brain haemorrhages which have left me paralysed in my right hand. As luck would have it, I’m left-handed, but there’s so much I can’t do or find a challenge – lighting a gas hob, for example. Or just buttering toast! But I’m finding ways to get by.

Ironically, whilst in hospital and unable to walk unaided, with slurred speech and issues with balance, the news came in that Tucatinib had been approved for use on the NHS. I think it was one of my proudest moments, knowing that I had had some small part, through Breast Cancer Now and Voices, in campaigning for it.

Now, all women with secondary brain tumours have the chance to get a revolutionary new drug. I expect to start treatment with it myself in a few weeks; I'll be one of the first in my county to be prescribed it, which means so much given that it's something I thought might come too late for me.

I still feel lucky, despite it all

Rather than run, I do walking challenges and get medals walking a kilometer or two a day up to a target distance. Since leaving hospital and regaining mobility, I’ve earned two. I’ve just booked a theatre trip with five of my six siblings, and aim to do a bit of UK travel with my son as my trusty driver. I’ve also spent so much quality time with my boys (now 23 and 25) that I never would have, had this new challenge not presented itself.

So I feel incredibly lucky, despite it all. I could have died or had worse paralysis but I am still here, learning a 'new normal'. I am still able to enjoy the lovely spring and see the wonderful friends and family who keep me moving forward, and I do my best not to look back to what was or could have been.

Plus, I have another treatment option which I very nearly missed out on, with others in the scientific pipeline. There are so many reasons to be hopeful and thankful.

My cancer is still relatively stable, but Tucatinib may send it in to remission. 'Lucky' doesn’t really cover it!

 

If you have been affected by breast cancer and would like to share your experience in a way that could help others, we'd love to have you join our Breast Cancer Voices Network.

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