Pain of losing arm to Synovial sarcoma

NAIROBI: “Lord I thank you for the 26 years I had this arm, I ask for your grace to face the next chapter of my life without it.”

Glory Muthoni Sang’ made this prayer a few days before the four quarter amputation surgery that would see her loose her arm, shoulder blade and collar bone. The result of a rare form of cancer known as synovial sarcoma that presents itself as a slow-growing mass in the soft tissues around the shoulder, knee, ankle, near a joint or tendon and is occasionally found in the head and neck region, abdominal wall and lungs.

“On February 2012, I woke up with an ache at the back of my hand. I thought I had dislocated my arm during one of my morning stretches. I consulted a doctor at Kenyatta National Hospital who said I had twisted my arm and put me on physiotherapy. By my sixth session, there was a distinct lump under my shoulder,” Glory says.

She then sought a second opinion and was referred me to an orthopaedic who suggested biopsy to establish the nature of the tumour.

“The biopsy showed that the tumour was not cancerous and I was scheduled for surgery in August of 2012. After the operation, the surgeon suggested further tests be done in Italy, because the tumour was larger than he had expected,” she says.

Hardly two months into her marriage, Glory was told the tumour was cancerous.

While only about one to three individuals in a million people are diagnosed globally with Synovial Sarcoma, it accounts for about 15 to 20 per cent of cancer cases in adolescents and young adults.

The University Of Rochester Medical Centre explains it’s symptoms as a tender or painful swelling that may limit range of motion or press against nerves and cause numbness or pain as Glory experienced. It may be mistaken for an inflammation of the joints, such as arthritis.

“I do not remember crying when I was told I had cancer - for some reason I was very peaceful. I immediately consulted an oncologist who put me through two rounds of chemotherapy then radiotherapy when the former did not work. I traveled to India to have a pet scan done which confirmed that the tumour had shrunk and was pain free for a couple of months,” she says.

That was until July last year when the pain returned and would not subside despite Glory undergoing a new cycle of chemotherapy. A second pet scan showed the tumour was back and it was then that a friend referred her to Dr Morris Muhinga, a thoracic and cardiovascular surgeon, who recommended dis-articulation surgery.

According to Dr Muhinga, solid tumours rarely respond effectively to chemotherapy and radiotherapy alone and often, the most effective way to deal with them is through surgical resection with wide margins. This means the distance from the tumour to the place of incision has to be five centimeters laterally on both sides and depth wise.

“I was determined to keep my arm so the doctor gave me time to think about it. However, when the pain became too much, I agreed to the surgery and on January 28 this year at 9am, in the company of three doctors including an orthopaedic, plastic surgeon and Dr Muhinga, I went into an approximately seven hour surgery. It was successful but I experienced excruciating phantom pain that had me taking morphine,” she says.

Phantom limb pain is the feeling of pain in the area where a limb has been amputated. Although the limb is no longer there, nerve endings at the site send pain signals to the brain making it think the limb is still there. This is a challenge Glory continues to face although she is now able to manage the pain.

Glory has also adopted innovative ways of carrying out her daily activities with her right arm. She cooks, cleans and drives by herself.

“I made a decision that I would not fall into the trap of self-pity. I figured I was better off not having to battle depression and ulcers in addition to cancer. I am convinced God has a reason for allowing me to go through this and for that reason I focus more on how I can move on with my life,” she says.