Katherine Mills noticed a small lump under her knee and thought it could be related to severe fatigue she was experiencing at university.
Katherine, a communications worker, was finally diagnosed with incurable lung cancer after 18 months of going back-and-forth to the doctors.
Katherine was just four months old when she was diagnosed at 22 with Metastatic Angiomatoid Fbrous Histiocytoma.
Katherine, 26, a Londoner, has an incurable form of cancer. She is now trying support others.
She has been working alongside Similar, 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 experiences began in 2016, when she had a chronic cough that occasionally produced pink sputum. A lump appeared on her back and she was unable to move.
Katherine was then given antibiotics by her GP for a chest infection. Katherine also experienced three fainting episodes while on public transport. Her mum encouraged Katherine to visit the GP again.
Katherine stated: “I had a test of my blood and was given 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 low haemoglobin so I was admitted to the hospital and given two units of blood by 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.”
Katherine reported that her blood tests revealed a high CRP (Creactive Protein) level.
She was then referred back to the Rheumatology Department, where further tests were performed.
Katherine was close to finishing her English Literature/Creative Writing degree.
“I was writing essays from hospital beds and wards”She agreed. The university couldn’t give Katherine a large extension because she didn’t have a clear diagnosis.
She received just three extra weeks of instruction and graduated with a 2:1.
“THEY RULED OUT ALL CANCER”
Katherine was then referred to the Renal Department where she was diagnosed as having Granulomatosis and polyangiitis, a rare autoimmune condition.
Katherine continued to have symptoms despite being treated with low dose chemotherapy agents and steroids.
“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.
Katherine said that Katherine was becoming more dependent on blood transfusions. She had a haemoglobin of 60, when it 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 tumor that has been linked with EWSR1/CREB1 gene fusion.
The following symptoms are common:
- 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 in her knee continued growing. First, it was diagnosed with a varicose and then pseudo-aneurysm.
In January 2017, she began treatment for an undiagnosed autoimmune disorder. The cause of her severe pain was misdiagnosed as autoimmune disease. She was treated with morphine in March 2017.
Katherine was then referred back to the Royal Marsden. They performed a biopsy and came up with no results. The lump was now the size of an egg and they decided to perform surgery.
“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 discovered the rare sarcoma in the leg lump as 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 that point, I was using an electric wheelchair. My face had been treated with long-term high-dose steroids and now I 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. “
Katherine told her then that she had an advanced, incurable disease. “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. ”
She was diagnosed with cancer and began palliative care. However, she was so sick that she couldn’t tolerate chemotherapy.
Katherine received stints in ICU, as well as other types of treatments.
She continued: “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 doctors have been searching for drugs that will help her fight cancer. In 2018, Katherine started receiving Paclitaxel which is commonly used to treat Breast Cancer.
ADVICE FOR YOUNG PEOPLE WITH DIAGNOSIS OR WHO LIVE WITH CANCER
Alike is an app that assists people in dealing with the challenges of living with cancer.
The Alike app launched by 27-year-old, two-time cancer survivor Brad Gudger, allows users to ‘swipe’Connect based on your diagnosis, story, and interests. This allows you to find a group of survivors and patients that you can talk with at your own pace. 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. Each year, approximately 367,000 people are diagnosed as having cancer. 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 stated that cancer has a profound effect on everything and that the app could help to change that.
She advised, “Reach to your healthcare staff. Ask questions. Participate 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 Also 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.
Katherine received treatment for the first time in March 2021 after her September infection was cleared.
She said, “When I was diagnosed with cancer, I accepted the term.” ‘terminal.’I was aware that my life would be shorter, so 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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