How rare cancer diagnosis turned my life upside down
In 2018, John Mwangi, 28, was swimming in Diani, relaxing after a long day of giving talks during a training session. Unfortunately, he hit his knee in the process and had to go for a check up to find out if all was well.
While the hospital found nothing wrong, John later on developed some issues around the injured knee joint.
“It started swelling and wasn’t going down even as time passed. It continued for a while and I felt I needed to go to the hospital again. I was told it was haematoma (a bad bruise that causes blood to collect under the skin) or an internal bleeding. They gave me some pills as remedy,” he narrates.
But the swelling continued for a year, which worried him. He opted to get a second opinion from a surgeon who recommended they perform a procedure that involves making a small cut in the skin and drain blood from the knee. However, instead of blood he found something else.
“They found a growth weighing 500g within the leg. It was already cancerous; the accident just helped me know I had cancer. Without that it could have grown and maybe spread to other body parts,” he says.
The type of cancer John was diagnosed with is called synovial sarcoma or synovial cell sarcoma, a cancer of smooth muscles such as the ligament and tendons.
Primus Ochieng, a clinical oncologist, University Of Nairobi says synovial sarcoma is a cancer arising from soft tissues commonly around the synovial joints. The joints are found between bones that move against each other such as the hip, knee and shoulder.
“However synovial sarcoma does not arise from the joint itself, but the tissues around it. It can also occur anywhere including head and neck region and chest wall as well,” he says.
The five most common cancers in Kenya are breast, cervical, prostate, oesophageal and colorectal, with cervical as the leading cause of cancer deaths followed by breast, oesophageal, colorectal and prostate in that order. Unlike these, synovial sarcomas are very rare.
“It has a world incidence of one per cent in 100,000 per year. In Kenya, there is no current data available,” adds Dr Ochieng.
Studies show it commonly affects males more than female of age around 30 years, and is quite aggressive, with early spread occurring in the lungs.
“In the early stages of the condition, synovial sarcoma may cause no noticeable signs or symptoms. However, as the tumour grows, affected people may notice a lump or swelling. In some cases, the tumour can limit range of motion or cause numbness and/or pain if it presses on nearby nerves,” explains Catherine Nyongesa, an oncologist.
She says while researchers haven’t established what causes synovial sarcoma, they do know it’s related to changes in your chromosomes.
“When this happens, your cells don’t work as they should, and your body develops a mutant gene that causes synovial sarcoma,” notes Dr Nyongesa.
This cancer generally grows slowly and the person can stay for a long time, even up to five years, before they notice anything unusual. In most instances, the first sign is usually a painless lump. But as it gets bigger, it might press against nerves or muscles, which makes the patient uncomfortable or give them trouble breathing, or both. While the tumours can occur in children, they generally develop in people between 15 and 40 years.
“Synovial sarcoma is one of the most common soft-tissue tumours in adolescents and young patients, with approximately one third of cases occurring in the first two decades of life. Mean age of patients at diagnosis is approximately 30 years,” she says.
The other reason one might not notice symptoms is synovial sarcoma can grow without causing pain. Based on location of the tumour, the cancer can be found in three anatomic regions: trunk, which comprises of the head, neck, thorax, abdomen, and pelvis; distal extremity, which is the hands, feet, and ankles; and proximal extremity, which is usually the arms, forearms, thighs, and legs.
There are three types of synovial sarcoma as well based on their form and structure, including monophasic, biphasic and poorly differentiated types, which vary according to the type of cells they affect.
Poor prognosis
“Synovial sarcoma has survival rates of 50-60 per cent at five years and 40-50 per cent at 10 years. However, advances in oncologic therapy, particularly the development of monoclonal antibodies, may improve survival rates. The disease has poor prognosis because of late local recurrence and distant metastases (spread of cancer cells from the place).
The most likely place it will spread to is the lungs,” she explains.
Some of the risk factors, according to Ochieng, include exposure to or previous radiotherapy treatment, genetic disorders such as neurofibromatosis (genetic disorder of the nervous system), Li Fraumeni syndrome (a rare disorder that greatly increases the risk of developing several types of cancer) and retinoblastoma (eye cancer that begins in the retina) and exposure to chemicals such as arsenic, vinyl chloride
He adds treatment depends on the stage.
“Localised may be cured with surgical removal depending on extent and other factors. In most cases, additional treatment with radiotherapy is needed to prevent it from recurring. In other cases, radiation treatment may be given before surgery to reduce the size,” he adds.
For John, the misdiagnosis that led to his first surgery, tampered with the cancer, but luckily, after some tests, it hadn’t spread to the other parts of his body. However, he received a more devastating news.
“After the tests I met with an orthopaedic surgeon who recommended my leg be amputated. It was too much to take in. Had I opted to live with my leg, my chance to live would have been one or two years. I had refused at first, but when I started having pains, I opted for amputation,” he recalls.
This was in July 2021. With that, his whole life changed and had to learn everything he used to do with ease, afresh.
“I had to learn how to use crutches, how to bath, how to stand on my one leg. It’s a whole new life to begin with and each day there is something to learn. Secondly, I had to learn how to accept myself, which was hard. I’m lucky that I have supportive friends and family who have made life worth living,” he says.
Having taken care of his late mum who was diagnosed with cervical cancer in 2017, it was easier to understand more about his condition and know how to take care of himself.
“The hospital told me my mum had last stage cervical cancer and that she was dying. This broke me and I turned to alcohol, especially since I was alone and I didn’t know who to tell or share it with. I lost my shop to auction and my house too since I couldn’t pay and ended up in the streets until I had to gain the courage to go back to the village,” he narrates.
But through support groups such as Kilele, which he joined, John has found assistance in knowledge, medication, counselling and encouragement. He has also received financial assistance to cater for treatment.
One chemotherapy cycle costs about Sh150,000 per session, which is quite expensive. John requires six cycles, each done after four days. This means he is always admitted for four days after every two weeks at the Kenyatta National Hospital private wing. Since his amputation, he has had one per month except in December, when he had two.
“That’s how I have been surviving and doing my chemotherapy through an M-Changa account. So far I have done five cycles of chemotherapy and will do my last soon. Afterwards, we will do some tests, including MRI and CT scans to check on the progress of the treatment, but so far so good I am okay, I don’t have any pains and I’m doing great with the treatment,” he says.
He should have undergone his last chemotherapy last week, but because of lack of funds, he had to stay home. He recommends the government opts to make medication free or affordable as it’s what drains most families. Additionally, the treatment is exhausting mentally.
“It takes a lot from you, hair loss, nails turning black, nausea, diarrhoea, vomiting and all other things, and if you are not careful, that takes away your confidence. You have to keep on being mentally okay,” he explains.
He adds that meeting other cancer survivors who encourage you and motivate you to go on helps a lot.
John is looking forward to going back to the adventurous life he had before diagnosis and treatment.
“I am looking forward to resuming hiking once I am done with the treatment and I get a prosthesis. My life was an exciting one. I was an outdoor person, all over with a love for community service, so I was always either in a children’s home or with friends out for a walk, travel or adventure,” he says in conclusion.
