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Despite multiple visits to GPs, Nicky was told for more than a year that the change in her breast was nothing to worry about. She tells us about her frustration, her eventual diagnosis, and how she's coping now.
It all started back in September 2016 on our honeymoon. While holding on for dear life in a safari truck bouncing across the Serengeti, I felt a tearing sensation across my breast. I went to the GP as soon as I got home but was told the lesion on my nipple was eczema - nothing to worry about.
The GP even told me not to google Paget's disease as it ‘definitely wasn’t that’. Spoiler alert: it definitely was.
The lesion wouldn’t heal, despite regular wound dressings from the practice nurse. I was referred to the breast clinic, saw numerous GPs and a private dermatologist, only to be sent away with steroid cream and no further tests.
After waiting a year for an NHS dermatology appointment, I begged the doctor for a biopsy. Thankfully, she gave me one.
I got the news that it was breast cancer. My GP was panicked and couldn’t stop apologising. I’d had cancer for at least two years by that point.
‘Am I going to die?’ I asked.
‘I don’t know,’ she said.
My initial reaction was one of pure rage, not because I’d got cancer, but because this thing had an unfair head start despite my best efforts. I’d done everything right – I just wasn’t taken seriously.
When I met with my consultant, he diagnosed Paget’s disease and Ductal Carcinoma in Situ (DCIS), and said I was one of his youngest ever patients. He did everything he could for me.
From there, I entered what felt like a hamster wheel of treatment. I turned up over and over to get poked, prodded, injected and have things cut out. I underwent four unsuccessful attempts to remove the affected area before being told I needed a mastectomy.
I agonised for a few months over reconstruction. I just wanted someone to tell me what the ‘right’ choice was, and ended up having some interesting conversations in the process. One person I spoke to thought it was barbaric. Another asked if it was ‘just a boob job’.
I came to think of my treatment options like going to a restaurant where all the choices were a Bush Tucker Trial from I’m a Celebrity.
My husband was absolutely amazing when I asked him what he thought. He told me he was most attracted to my confidence and would love me whatever my body looked like.
My dad, bless him, was also a complete star. He listened and asked really good questions – though it’s probably not a conversation a father expects to have with his daughter!
In the end, I opted for immediate implant reconstruction because it offered a shorter recovery time, no scarring to other areas, less chance of further operations and wouldn’t potentially impede my yoga planks. For anyone reading this who also has to make a reconstruction decision, just remember that the right choice is whichever one you choose.
I remember coming round from surgery and having the first peak down my hospital gown. I was happy and relieved to see some sort of cleavage.
At no time did I feel in pain. The only very mild annoyance was my drain - I still can’t look at Siracha bottles and not be reminded of it.
However, I was upset the first night, probably due to a combination of hope, relief, and all the drugs hitting me. My lovely nurse, just sat and hugged me. I’ll never forget this act of compassion and humanity.
I was discharged from hospital after three days and stunned at how quickly I healed and recovered. I followed my physio exercises (especially as I’d experienced cording after my other surgeries so didn’t want that again) and was back to light yoga within a few weeks.
The human body is amazing; I’m in awe of what it can do.
When I got the all-clear, initially I felt amazing. So did my bank balance, as there was no need for ‘surgery rewards’ anymore. But that feeling soon disappeared.
Despite being surrounded by an army of loving and supportive cheerleaders, I felt utterly alone. I just couldn’t work out why I wasn’t happy and able to snap back into normal life.
I found talking about what had happened very difficult and tried to block everything out. However, it’s impossible to do this, as cancer permeates every area of your life.
My mental health took a real nosedive and everything started to spiral out of control. I suffered with crippling anxiety and post-traumatic stress. I didn’t recognise who I was anymore and became pretty vile to be around. At the height of this, I told my lovely mum to eff off, and I’m still horrified that my anger made me do this. (Sorry again Mum.)
It sounds counter-productive but, when you develop a fear of something, the best thing you can do is face it. As soon as I realised this and started acknowledging what had happened to me, everything changed.
I cut the head off the monster so that it couldn’t scare me anymore.
When my GP initially gave me the news, I’d said that I would deal with the cancer and then deal with her. I’d done the first part, so now I had to do the second.
An important part of my recovery was getting my diagnosis investigated legally and holding those responsible to account. I needed justice. The thought of someone else having to go through this or following all the wrong advice and dying was incomprehensible. I had a responsibility to shine a light so those involved could learn, re-educate and never make the same mistake again.
After that, my final part of moving on was using my experience to help others and rebranding it as something more positive.
When going through treatment, I desperately wanted someone who could show me the ‘way out’ sign. Someone who understood the rollercoaster I was on. I’ve since become a Someone Like Me volunteer so that I can be that person to others.
I never wanted to be part of the cancer club, but now I am I can see it’s such an inspiring and supportive community – and I love it.
If you are concerned about any changes to your breasts or chest, you can always call our Helpline on 0808 800 6000. Find out more about the signs and symptoms of breast cancer on our webpage.