I was diagnosed with incurable cancer 18 months after pointing out tumour to doctors
WHEN Katherine Mills spotted a small lump behind her knee she thought it might have been linked to the serious fatigue she was struggling with at university.
After going back and fourth to the doctors over a period of 18 months, Katherine, who works in communications, was diagnosed with incurable cancer.
Katherine was given just four months to live when she was diagnosed with Metastatic Angiomatoid Fibrous Histiocytoma at the age of 22.
Katherine, 26, from London, is currently living with incurable cancer and is now trying to support others with their journey.
She has been working with Alike, a peer support app for cancer patients and survivors, as she says she wants everyone impacted by cancer to have somewhere safe to discuss their experience.
Her own experience started in 2016 when she started to have a cough that occasionally brought up pink sputum and she noticed a lump on the back of her knee.
From this her GP prescribed antibiotics for a chest infection, but Katherine then suffered three fainting episodes on public transport, which her mum encouraged her to go back to the GP about.
Katherine said: "I had a blood test and was prescribed iron for anaemia. This anaemia was monitored, and after one particular blood test my GP called me and told me to go to A&E because my results were worrying.
"I had very low haemoglobin, for which I stayed at hospital for a few days and received two units of blood via transfusion.
"While I was in hospital, I pointed out the lump behind my knee, but the doctors said it was a ganglion, and nothing to worry about.”
It was around this time that Katherine said she had further blood tests which identified an extremely high CRP (C-Reactive Protein) level in her blood.
She was then referred to the Rheumatology department where more tests were run.
At this time Katherine had been on the cusp of finishing her English Literature and Creative writing degree.
"I was writing essays from hospital beds and wards", she said. But as Katherine didn't yet have a firm diagnosis, the university was unable to give her a large extension.
She got just three weeks extra and managed to graduate with a 2:1.
'THEY RULED OUT CANCER'
Next Katherine was referred to the Renal department where she was diagnosed with an abnormal presentation of a rare autoimmune condition called Granulomatosis with polyangiitis.
This was then treated with steroids and low dose chemotherapy agents, but Katherine continued to suffer with symptoms.
"By this point, I was also coughing up blood. I was also referred to a respiratory specialist in the hospital. I had a bronchoscopy which was inconclusive. They didn’t find lung cancer cells, and so they ruled out cancer", Katherine said.
Increasingly, Katherine says she was having to rely on blood transfusions and she had a haemoglobin level of around 60 – this should have been 120.
"I was also suffering from night sweats – as many as six incidents in a single night. I lost weight, I was vomiting and I was extremely exhausted."
Know the signs – what is Angiomatoid fibrous histiocytoma (AFH)?
AFH is a rare soft tissue tumour that has been associated with EWSR1-CREB1 gene fusion.
- Coughing Blood
- Weight Loss
- Night Sweats
- Joint Pain
- High Temperature
- High Inflammation Markers
Katherine was suffering with lung lesions and St Thomas and Guy’s hospital was trying to find out what was causing them to grow.
The lump on the back of her knee continued to grow and first it was diagnosed as a varicose vein, and then as a pseudo-aneurysm.
In January 2017 she was put on treatment for the misdiagnosed autoimmune disease. It was this cause of treatment that triggered severe pain in the lump and in March 2017 she was given morphine.
Katherine was then referred to the Royal Marsden who took a biopsy of the lump which came back inconclusive. They decided to operate as the lump had grown to the size of an egg.
"When I went in for surgery, I was prepared to wake up without a leg, depending on what they found in the operating theatre", Katherine said.
Experts analysed the leg lump and found it was a rare sarcoma called Angiomatoid Fibrous Histiocytoma.
Katherine added: "In June 2017, I underwent an investigative surgery at Guy’s Hospital to remove a piece of the lesion for analysis.
"The sample from my lung was compared with the sample from my leg, and the results confirmed that the lesion in my lung was cancerous and was the same type as the tumour from my leg.
"At this point, I was using a wheelchair, my face had been warped through long-term, high-dose steroid treatment, and I now had two large scars from my surgeries.
"But I was still hopeful. Naively, I assumed that now they had identified what was wrong with me, I would receive treatment and begin to recover. "
She was then told she had an advanced disease with no cure, Katherine said: "Angiomatoid Fibrous Histiocytoma is usually found in the limbs and is treated with surgery. I had tumours in my lungs, liver, spleen, and lymph nodes. Surgery was simply not an option. "
After her diagnosis she began palliative treatment, but she was so ill that she struggled to tolerate the chemotherapy.
Katherine had stints in ICU and different type of treatments.
She added: "My hair fell out and I lost about three stone in as many weeks. My face was still swollen from steroids, but my legs looked like sticks."
Katherine's consultants have continued to find drugs to help her live with cancer and in 2018 she started having Paclitaxel, which is commonly used for Breast Cancer.
ADVICE FOR YOUNG PEOPLE AWAITING DIAGNOSIS, OR LIVING WITH CANCER
Alike is an app that helps guide people through the difficulties of living with cancer.
The Alike app launched by 27-year-old, two-time cancer survivor Brad Gudger, allows users to ‘swipe’ to connect based on a mixture of diagnosis, stories, and interest, providing individuals with a group of patients and survivors they can interact with on their own terms. The app aims to combat the loneliness associated with cancer, by giving people the space to talk through experiences to those others that understand.
The launch comes after data found that 83 per cent of young people experience loneliness during and after treatment.
Cancer and loneliness is a growing issue. Approximately 367,000 people are diagnosed with cancer every year. In various studies in the UK, it has been found that 80.7 per cent of young people with a long-term illness or disability reported feelings of loneliness .
Katherine said that everything is impacted by cancer and hopes that the app can change it.
She said: "Reach out to your healthcare team. Ask questions. Get involved in your own treatment plan. Diagnosis is a lonely place – you might feel like you’ve been catapulted into a parallel universe.
"Everyone else is the same, but you’re undergoing a huge life change. And really, the only people who understand that is people who’ve gone through it. So, I’d genuinely have to say: download the Alike app. Having somewhere to vent and talk makes a difference.”
She stayed on this until March 2020 when she was diagnosed with a fungal chest infection and had to pause chemotherapy to begin anti-fungal treatment.
In September the infection resolved and March 2021 marked Katherine's first year off treatment.
She added: "When I was diagnosed, I embraced the term ‘terminal.’ I knew that I had a shorter life span ahead of me, and knowledge became my weapon.
"Now I have left treatment and been lucky enough to have stable disease, I say that I am living with incurable cancer.
"There is no known cure for Angiomatoid Fibrous Histiocytoma except surgery, and the position of my remaining tumours makes surgery and other interventions impossible."
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