PUBLISHED ON: 4 May 2020

After finishing active treatment for breast cancer, Lucy was told she had chemotherapy-induced cardiotoxicity. She explains how she manages this rare condition and why she is sharing her story to help others.

A woman, lucy, smiling

I felt vulnerable

I was diagnosed in May 2017. I first noticed something after a reiki practitioner drew my attention to my underarm. I got home and felt a thickening of my skin. My sister had been diagnosed with breast cancer In October 2015 and I couldn’t risk not going to get it checked out.

I was told that I had grade 3 triple negative breast cancer. The diagnosis left me feeling extremely vulnerable as targeted therapy isn’t possible when treating triple negative cancers. You want all the protection you can get.

I felt like I was alone at sea. It was a year to the day that my sister had finished her treatment.

Cancer affects you psychologically

Cancer doesn’t only affect you physically, but also psychologically. After finishing chemotherapy in December, I didn’t feel like I was recovering.

I was recommended to attend a Younger Women Together event. I thought it would be helpful to connect me with other people who had received a triple negative diagnosis.

I hadn’t met anybody in the breast care unit who I felt related to my experiences. I came away from the event exhausted, but it was amazing. I met women who just got it and were so supportive. If we could bottle the empathy I received in that room and hand it out to people, it would be a great medicine.

I never imagined something else was wrong

I finished radiotherapy in February 2018. A few months later, I started to think something wasn’t quite right. I had worsening fatigue and breathlessness. I understood that recovering from treatment could take time but never imagined that something was wrong. 

I explained my symptoms of breathing difficulties to my GP I was sent for a chest x-ray which subsequently showed an enlarged heart.

My oncologist then felt it was a good idea to investigate further and was referred for an echocardiogram. It showed my heart wasn’t working properly.

I was admitted onto a cardiac ward with left ventricular heart failure. I was told I had chemotherapy-induced cardiotoxicity. I felt my world crumble again.

A woman, lucy, having chemotherapy treatment

It's important to get checked

'Some treatments for breast cancer affect the way the heart works. This is usually temporary but for a small number of people it may be permanent,' explains Rachel Rawson, Breast Cancer Now Senior Clinical Nurse Specialist.

'You may have tests to check how well your heart is working before, during and after your treatment.

'If you have pain or tightness in your chest or feel breathless or notice changes to your heartbeat at any time during or after treatment, tell a doctor straight away.

'These symptoms can be caused by other conditions but it’s important to get them checked by a doctor.'

You can find more information in Macmillan and British Heart Foundation’s booklet.

The condition is so rare

I was not prepared for another life-changing diagnosis. Chemotherapy had saved my life but also threatened it. My treatment had caused damage to the heart muscle and it had become weaker and less efficient. Cardiotoxicity can develop during cancer treatment, within months or years later and is a very rare side effect of chemotherapy with no cure.

My condition meant I had to postpone my DIEP reconstruction. I wasn’t fit enough for surgery and desperately searched for people that also had experienced chemotherapy-induced heart failure, but found very little online, as it was statistically so rare. I felt like I was in limbo.

I want to share my story to help people like me

I want to help raise awareness about my condition. I was warned about heart failure as a side effect but the only words I could hear were ‘chemo’ and ‘hair loss’. I thought every procedure came with a risk, but you don’t assume it’s going to happen to you.

I couldn’t find a lot of information about cardiotoxicity when I was diagnosed. I went onto the internet to find blogs and articles but there’s not much out there.

I want to share my story to help one person, looking for that one article on their condition.

I’m learning to trust my body

Having the diagnosis of triple negative breast cancer and then another life-threatening condition has been lonely at times. It’s been peaks and troughs, but I don’t wallow in the troughs.

I’m a Running Wardrobe Manager for an opera company, so I’ve had to adapt how I approach things. You learn the parameters of what you’re able to do. I've completed a heart rehabilitation exercise programme and I am relying on lifelong medication to keep my heart working. I’m learning to trust my body with help from the amazing support I’ve received.

I've also been on a Breast Cancer Now Moving Forward course and called the Helpline which has given me confidence and knowledge.

I’m learning to enjoy my life under a shadow of uncertainty. Cancer will always be part of my life, but I am adamant to not let it frame who I am.

 

If you have any concerns about side-effects from treatment, you can speak to our healthcare professionals on our Helpline.

Helpline