Gift Monareng lives with a football-sized tumour on his back, which makes it difficult for him to walk or sit. The 24-year-old from Acornhoek, Bushbuckridge in Mpumalanga has cellular angiomyxoma, a rare soft-tissue tumour that isn’t cancerous.
“It’s been 14 years since I have been living with this tumour. I am tired and constantly in pain. It has grown to be huge now, and I cannot sleep on my back and only sleep on my chest. I am always vomiting and weak. The pain is unbearable, and the tumour has a yellowish discharge that smells very bad,” Monareng tells Health-e News.
In 2011, aged ten, he developed a tiny reddish bruise on his back, which eventually turned yellowish. “We didn’t really pay any attention to it and thought it would go away eventually,” he says.
In 2023 the tumour had grown so large that he decided to get medical help.
He was admitted to Tintswalo Hospital in Acornhoek in July 2023 where they cleaned the pus from the tumour and discharged him after giving him painkillers.
In August 2024 he was admitted to the Steve Biko Hospital in Pretoria where he was diagnosed, and underwent surgery to remove the tumour. But doctors warned him that the tumour had now taken root, and that every time they removed it, the tumour would grow back. It’s been a little over a year since his surgery, and the tumour now covers most of his back.
In need of constant medical care
Moraneng is in need of regular medical care, but says he doesn’t always receive assistance.
“Since being discharged from Steve Biko Hospital in October 2024, I have now been going to Tintswalo Hospital for check-ups. Sometimes the hospital doesn’t even help with medication for the pain or changing the bandage dressing on me,” he says.
The regular hospital visits are costly, and his family is struggling with the financial strain. They collectively spend over R3000 a month to cover his regular check-ups at the hospital, as he has been told.
“He has to go to the hospital 12 times in a month, and we don’t have the money at home. We live through borrowing, even from loan sharks. I survive on piece jobs around Mpumalanga. The same as his father, so his sickness is taking a serious toll on everyone at home,” says his mother, Betty.
“The hospital used to give us bandages so that we could change him at home. But nowadays we don’t get bandages. And the hospital doesn’t even change his dressing on the tumour.”
What does the hospital say?
This month, Monareng was admitted to Rob Ferreira Hospital in Mbombela, after seeking care there. Staff at Rob Ferreira Hospital referred him to Steve Biko Hospital for further medical help, but Steve Biko reportedly said the tumour had gotten worse and they didn’t know what they could do to help him.
Steve Biko Academic Hospital Chief Executive Officer (CEO), Dr Lehlohonolo Majake-Mogoba, confirmed that Monareng is a known patient at the hospital.
Subscribe to our newsletter
“Regarding events that led to allegations of being turned away without any explanation, that could not be responded to now as the plastic team is going through the patient’s file and will revert with the correct response,” Majake-Mogoba tells Health-e News.
What is cellular angiomyxoma?
According to the South African Medical Association (SAMA), cellular (or aggressive) angiomyxoma is an uncommon soft-tissue, non-cancerous tumour.
“While more frequently diagnosed in women, it can also occur in men. The tumour often grows slowly and may be painless. Many patients discover it incidentally during a clinical examination,” explains SAMA in response to Health-e News’ queries.
The primary treatment is surgical removal of the entire tumour and surrounding tissue or “with clear margins”. However, this isn’t always possible because the tumour often grows around sensitive structures, says SAMA.
The organisation recommends that Monareng go back to his treating facility to get clarity on his diagnosis, treatment plan and the reasons for the referrals made.
SAMA says all patients are entitled to counselling, informed consent and clear communication regarding their health.
Patients’ right to fight
Comfort Maluleke, senior case manager at the advocacy organisation, Campaigning for Cancer, says Monareng can approach their organisation to log a case for denial of treatment through their Project Ask.
“In such cases, Campaigning for Cancer will act on behalf of the patient by referring the complaint to the provincial Department of Health. If the matter remains unresolved, it will then be escalated to the National Department of Health for investigation and resolution,” says Maluleke.
He says in cases like Monareng’s, it’s advisable that patients lodge a complaint with both the provincial and national Departments of Health as soon as these issues occur. “Patients have the right to raise concerns, and a formal dispute resolution process exists to address such issues between patients and the hospitals involved.”
The Mpumalanga health department did not respond to our media query. – Health-e News
