Lauren on being a young person living with a rare cancer

I was first diagnosed with a benign giant cell tumour of the bone in August 2015, following a severe stabbing pain in my ankle. I attended the GP, had an x-ray, and was referred to an orthopaedic consultant, who confirmed it was GCTB. I quickly had surgery (curettage and a bone graft) with the aim of new bone growing around it.

Two years later I had local recurrence with similar symptoms, including severe pain, difficulty weight bearing, my ankle ‘giving way’ and lack of movement due to stiffness. I had more surgery - this time curettage and bone cement - to give me more structure. Both tumours were benign.

Getting diagnosed with metastatic cancer on my 31^st birthday

Eight years later I started to experience a similar pain and stiffness to before. I had struggled with walking ‘properly’ since my first diagnosis, but noticed that I was significantly limping and experienced aching in both of my hips. I contacted my GP and asked for a physio referral. But even after six months of physio, the pain continued and became so severe that I had to use two crutches again. I asked for an MRI and a referral back to my old consultant, who, luckily, was still working and agreed to see me.

Following the MRI, the consultant confirmed my GCTB had returned and had destroyed most of my talus bone, leaving less than 5%. Due to the complexity of a third recurrence, I was referred to the bone tumour service at the Royal Orthopaedic Hospital in Birmingham.

Naively, I thought everything would be fine. But between July and August 2024 I had 3 surgical biopsies, countless MRIs, CTs and a PET scan, and on my 31^stbirthday my consultant confirmed my GCTB had ‘undergone malignant transformation’ and had metastasised to three other areas – my pelvis, sacrum and cervical spine.

Dealing with a rare diagnosis

The consultant told me he had only seen two other cases of malignant GCTB in his career, and never before with bone-only metastasis. I joked that I’d always told my now-husband that I was one-in-a-million. He corrected me and said “one-in-a-billion”.

Under this light-hearted façade, I was stunned. Sad. Heartbroken. My thoughts went straight to my little boy. Hearing you are “rarer than hen’s teeth” by an oncology consultant is not what you want to hear.

I noticed my tangled thoughts becoming negative, focussing on ‘no cure’, ‘nobody else’, and I questioned how I would find support groups for this. Towards the end of the appointment, he mentioned that I ‘might need an amputation in the future’. I cried. He gave me contact details of a Macmillan nurse and a plan for chemotherapy in my local area. I left that appointment with a hundred questions and a sense of stillness.

When I got home, I did lots of googling (which isn’t the best idea since the prognosis isn’t great). It seems there isn’t enough evidence of which treatments do and don’t work because so few people are diagnosed with it. So, my thought process was: 'the experts don’t know what will/won’t work, so what if it DOES work?'

And my glass-half-full approach has been my attitude ever since.

Managing treatment and side effects

There is no licensed chemotherapy for malignant GCT, so my old orthopaedic consultant, a new oncologist and I agreed we would try MAP chemotherapy, which is used for osteosarcoma.

It was ruthless, relentless, and characterised by late-night admissions with neutropenic sepsis and abnormal blood results. I spent most of the 8 months of treatment in a hospital bed, video-calling my 2-year-old son and husband. I lost 3 stone in weight over a short period of time, suffered mouth ulcers, constant nausea, had sores all over my hands and constipation like you wouldn’t believe.

These side effects are in addition to the sheer exhaustion, fatigue and hormonal changes that chemo brings with it. Oh, and not to mention the small consequence of losing all my hair (!!) – which in the grand scheme of things, is a small price to pay. Luckily, since finishing chemo these symptoms have mostly subsided.

Alongside chemo I also had a targeted therapy injection called denosumab. After the loading dose, I now have this every month and this will continue indefinitely.

We are currently working on my pain management and balancing this with quality of life. It’s alright being numb to pain, but if you can’t poo for a week, that’s no good for anyone!

My main point is that although some of these side effects seem minor in isolation and a small consequence of potentially life-extending treatment, when combined together they can become debilitating and dysfunctional in your everyday life.

'Lucky to have a place like Maggie's'

I'd always wanted to visit Maggie's during my inpatient stays, but struggled to because of tethered IV drips, tiredness and late-night discharges. But even just knowing that it was there helped me psychologically whilst I was in hospital.

More recently, I attended the young person’s cancer support group, where I met some amazing, amazing (they deserve two ‘amazing’s!) people and facilitators.

I felt like I had found home.

People were curious, inquisitive, empathetic. Nobody squirmed at the disclosure of gross side effects; they listened without judgement and offered a gentle ‘me too’ nod. Cancer as a young person can be a very lonely journey, but I left that group with a sense of connection and feeling a little less alone.

Living with cancer as a young person

I used a wheelchair or a mobility scooter for around 8 months due to the pain in my ankle. Only recently have I started bearing more weight and using one or two crutches depending on my energy levels.

The shame of riding a mobility scooter with my baby sat on my lap really ate me up. I had many negative thinking patterns of ‘people will think I’m lazy’, ‘I look like I don’t need this’, ‘only elderly people drive mobility scooters’. Unfortunately, the stares from passers-by only fed into that narrative.

It took me a couple of months to challenge this negative thinking and check the facts on the shame. It was not valid. I was adapting to my circumstance, and by using a mobility scooter I was able to improve the quality of life for me, my son and my two dogs! What helped was also my husband not having an inch of embarrassment walking alongside me. He is my emotional anchor and helped me put things into perspective.

It is difficult living with cancer as a young person, there is no doubt about that. It’s even more difficult to accept that, as a young person, a mother, a new wife, a nurse, I have cancer that is incurable.

Perspective and an appreciation for life

Cancer has slowed me down – both metaphorically and literally! I pay more attention to the mundane moments of everyday life, I laugh more, I say yes more. I sit and revel in the enchanting moments of watching my toddler line up 32 hot wheels cars for the seventh time in a morning. My stress levels have plummeted. I don’t give attention to things that bring negativity, gloom or doubt or allow these to hijack my thoughts.

Those of us in the younger generations are surrounded by comparison, criticism and self-judgement, but cancer has put things into perspective for me. I am living. And when I die (because everybody does, eventually), I know that people won’t talk about what I looked like, what I ate, what I wore. They will talk about my personality, my consideration and kindness to others and my endless love for my family and friends… well, I hope so anyway!

Ironically, cancer has reaffirmed my identity. In my role as a mental health nurse and DBT therapist, I help others to manage difficult emotions and have a life worth living. I did this for myself in the face of trauma. I shout, I cry and I validate my anger because yes, being diagnosed with cancer is (insert word here!) but I know I can experience sadness and joy at the same time.

People around me have struggled to see me ‘accept’ my diagnosis but I remind them that acceptance isn’t approval. It is what it is.

I can’t control it or change it, but I can control how I choose to live the rest of my life. I am living with cancer, not dying with cancer.

And I will continue to live with it until it no longer allows me to.

We’re here with you

Our cancer support specialists, psychologists and benefits advisors are here for everyone with cancer, and all the people who love them. 

• Come and see us at your nearest Maggie’s
• call us on 0300 123 180 or arrange a callback
• email us at enquiries@maggies.org