2016 was supposed to be a good year for Lauren Mahon.
The then-31-year-old had just been promoted to her first manager position at work and had also moved out of her parents’ home. However, on 31 August that year, she was diagnosed with breast cancer.
“It was a shock to the system,” Mahon tells Stylist. “It was supposed to be this really exciting transitional year for me, but instead it was really, really scary.
“I’d always been someone who was really outgoing and I spent all of my time with my family and friends. I’d always lived my life at 100 miles an hour – I didn’t sit still! But then I got my diagnosis, and all of a sudden I was bedbound and scared for my life.”
Mahon’s brilliant family and friends rallied around her but, she says, she couldn’t help feeling isolated at times. She didn’t know anyone her own age who had been diagnosed with breast cancer, meaning that she was left to grapple with her diagnosis and all that it entailed without a real point of reference.
“I just didn’t know what the future looked like,” she says. “My family and friends couldn’t understand half the things I was feeling and experiencing, because they hadn’t been through them themselves. It’s like me trying to talk about childbirth – I don’t have children, so I don’t know what childbirth feels like at all.
“Obviously you don’t want anyone you love to know what it feels like to be in your position, but it can be very isolating because that means you have no one to talk to about it with.”
Mahon wasn’t alone in feeling this way. Here in the UK, only 4% of women who are diagnosed with breast cancer every year are aged 39 and under (approximately 2,200 women a year). This means that most women in their 20s and 30s who are diagnosed are unlikely to know anyone their age with the disease, which can be an understandably lonely – and frightening – experience.
And while Mahon did know a friend of a friend who had been diagnosed with bowel cancer when she was 30, she was unable to offer her any specific advice, as she had been through completely different treatments, had different surgeries and had taken different drugs.
“She could understand a lot of the emotions I was feeling, but as she had a different cancer, her experiences were quite different,” Mahon says.
“It was only after I started talking to a couple of people online that I found certain things out. For example, someone said to me, ‘oh, has your nose hair fallen out yet?’ and there were so many things like that that I just didn’t know about,” she says.
“When you’re going through something so scary you just want to be able to say to someone, ‘oh my god, this has happened, is this normal?!’ Because you are panicking every single day.”
Unfortunately, feelings of isolation can sometimes be increased even further by family and friends. “When you’re going through a cancer diagnosis, people can find it difficult to deal with, and a lot of people will distance themselves from you because they can’t cope with it,” Mahon adds.
Research has highlighted just how isolating an experience being diagnosed with cancer can be. A 2018 survey of 3,000 women with breast cancer in England found that three-quarters (75%) felt more socially isolated at the end of their hospital treatment than when they were initially diagnosed. Some 13% of women said they left the house less than before treatment due to emotional and physical long-term side effects, with 35% feeling too anxious to do so.
Unbelievably, the same study also found that the majority (84%) of women with breast cancer were not told by healthcare professionals that there was a possibility of developing depression and anxiety following treatment. And if healthcare professionals aren’t telling women these important facts, and they don’t know anyone with cancer who can, then how are they supposed to equip themselves with the knowledge they need to face it head on?
Having struggled to find anyone who could relate to her diagnosis, Mahon decided to start talking about breast cancer online. She began sharing her experiences on Instagram under the hashtag #GirlVsCancer, in the hope of showing people what cancer really looked like.
“I had this perception of cancer but when I started going through it myself I thought, hang on a minute, cancer is not what I think it is. Cancer is me. So I wanted to show it through my eyes in a really curated way that was also real and raw,” she says.
Since then, #GirlVsCancer has grown to become a reference point for many young women seeking information about the realities of living with breast cancer. There are more than 2,000 posts under the hashtag on Instagram, where Mahon has over 36,000 followers. She has also launched a Girl Vs Cancer website, which acts as a “place for fierce women affected by the cretin that is cancer to feel empowered to deal with the shit show that a diagnosis means”.
As well as establishing an online community, Mahon also tackled her feelings of isolation by using the “Someone Like Me” service offered by the charity Breast Cancer Care. Her sister discovered the service after going into “medical secretary mode” and reading “every single breast cancer website she could find” following Mahon’s diagnosis, and recommended that she give it a go.
The service pairs people up with volunteers of all ages, who have been through all stages of breast cancer, for phone calls that can last up to an hour. It offers people the chance to ask questions and seek advice from women who have been there, done that and hopefully got the (charity) T-shirt.
Mahon requested to be paired up with someone who was diagnosed with breast cancer at the same age as her, but is now 30 years down the line from their diagnosis.
“I wanted to see my future,” she says. “That’s something that’s really hard to find on Instagram because people get well and leave the platform. And too right! They should get on with their lives and not think about it anymore. But that means that you never see the success stories of cancer treatment.
“You tend to only hear bad stuff in the press and through word of mouth. When I was diagnosed, people didn’t say to me, ‘I had a friend who had cancer and they’re alright now!’ Instead they said, ‘I had a friend who had cancer and they died’. That is all you hear.”
The service paired Mahon up with a 54-year-old woman called Claire, who was diagnosed with breast cancer in 1995.
“It was so refreshing to talk to someone who could reassure me about my future,” Mahon says. “She told me, ‘look, I’ve had the same treatment as you and now I’m in my 50s and I’ve had children’. During my treatment I had drugs that suppressed my fertility system, so I froze my eggs and had resigned myself to having any future children through IVF. So it gave me a lot of hope to speak to someone who has actually had children.
“It’s amazing to chat with someone who is that far down the line and see that recovery does actually happen. People live for a long time after breast cancer treatment. It really made me feel safer and believe that I had a future.”
How to tackle the loneliness of a cancer diagnosis
It’s been almost three years since Lauren was diagnosed with breast cancer. Below, she shares her advice for anyone who has just been diagnosed.
“The first thing to realise is that you’ve just been diagnosed, so give yourself a minute. I think everyone feels this pressure to share everything because of social media. I chose to share my story, but it took me two months before I started doing so. It’s a private experience, so don’t feel like you have to share it with everyone.
“I think the main thing is to get your tribe around you – those people who care about you, and who you can rely on. The first two weeks after diagnosis are really difficult as you don’t know what’s going to happen. I was totally lost. So I think it’s important to give yourself time to just be in your day-to-day, and not put pressure on yourself. A lot of information is going to come at you, so just breathe and take every single day as it comes.
“Then, as you start to understand more about what your plan is, have a look online and find people to talk to. You don’t have to message them straight away but when you have questions, you can ask them. The forums can be quite intense, so I’d advise talking to someone on a one-to-one level, as it filters out all the scary stuff that’s online.
“A cancer diagnosis can feel overwhelming so you have to take it step by step. The more people you tell the more questions you will get, so you have to know where you are before you start opening up to people. It’s a big thing.”
Around 2,200 women are diagnosed with breast cancer aged 39 or under in the UK every year – which can be a devastating and isolating experience for many women. Grete Brauten-Smith, Clinical Nurse Specialist at Breast Cancer Care and Breast Cancer Now, shares where younger women with breast cancer can find support:
• After a breast cancer diagnosis, it’s so important women have the chance to speak to someone who understands if they’d like to. Our Someone Like Me service matches people with a volunteer who has also been affected by breast cancer, based on their individual needs – whether it’s talking about genetic testing and family history, or concerns over sex and intimacy. And for expert support, our team of nurses can be contacted on 0808 800 6000.
• We run free Younger Women Together events across the UK, which bring together women with breast cancer under 45. For many, it’s the first time they meet someone else their age with a diagnosis, and the weekend gives the chance to talk openly, ask questions and share their feelings about issues like fertility, which can be affected by breast cancer treatment.
• There are also incredible digital communities younger women with breast cancer can access, like our online Forum or search for the private Younger Breast Cancer Network (YBCN) Facebook group. Plus, our end of treatment support app, BECCA, has inspiring blogs and articles, as well as support and information, to help women adapt to life after breast cancer.
You can shop the full range of Lauren Mahon’s new breast cancer T shirts by clicking here
Images: Holly McGlynn, Getty, Unsplash