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#SowetoMarathon: Why this prostate cancer survivor is running today

A marathon runner with prostate cancer uses his skill to promote awareness and encourage testing.

It is midmorning and the Soweto neighbourhood of Naledi is quiet. Thulani Sibisi is wearing shorts and running shoes. He looks 50, but is 62 and has just arrived home from his daily walk.

“I’m an early bird. I wake up at four o’clock every day and by five o’clock I go either for my run or walk, depending on how I feel,” he explains.

But today was a difficult day.

“I’m feeling tired because yesterday I had a two-hour run, so I only ran for an hour today.”

Sibisi is a seasoned athlete and is preparing to run 42km in the Soweto Marathon in November.

“I know I will be punished because I haven’t run that distance in 27 years, but I’m prepared to walk and run until I finish. If I qualify next year I will do the same thing for my last Two Oceans Marathon.”

The last time Sibisi ran a marathon was in 1989. He won the Two Oceans Marathon in 1986. But this time he will be running for a different cause.

“I want to create awareness of prostate cancer. I will run and walk to prove to people that even if you have cancer, you can do this.”

Demanding schedule

Every morning, when the alarm on Sibisi’s cellphone goes off at 4am, he goes outside to empty the two-litre plastic bottle he urinates in at night.

“After I empty it, I will eat fruit – an apple or a pear – and have a cup of rooibos tea. Then after 20 minutes, I go out for my walk or run. When I get back I do stretches, either outside or here in this little cage,” he says.

He was diagnosed with prostate cancer in December 2012. One of the symptoms of his illness is frequent urination.

Sibisi gets up from the edge of the double bed, which takes up a bulk of the space in the room he has been renting for the past seven months. He moves two plastic chairs to make space on the floor. Taking care not to knock over the pots on the two-plate stove, Sibisi sits down with his legs stretched out in front of him and leans forward, touching his toes.

“When I’m done with my stretches, I take a walk and then prepare water for my bath. After bathing, I prepare my breakfast. After I eat, I take my medication.”

He picks up a container: “This medication is for constipation because when you’ve got prostate cancer you get constipated and you aren’t able to go for number two.”

Picking up a box of tablets: “This one helps to stop the urine from blocking.”

A second box of tablets: “Then there’s this one, an iron supplement, because my immune system is very low so I have to take a supplement.”

Male reproductive system

Prostate cancer develops in a man’s prostate, a gland the size of a walnut found between the pubic bone and the rectum. It forms part of the male reproductive system and produces semen that transports sperm out of the man’s body during ejaculation, according to the Prostate Cancer Foundation in South Africa.

While advanced prostate cancer can make it difficult and uncomfortable to urinate, ejaculation can also be painful.

A 2013 study in the journal Prostate Cancer reveals that prostate cancer is the leading cancer among black men in the United States, Caribbean and Sub-Saharan Africa. “In black men, prostate cancer is also more likely to be aggressive or advanced,” says the United States research organisation Mayo Clinic.

Researchers have not established whether the reason for the high rate of the condition among black men is because of lifestyle, genes, or a combination of both, according to Melvyn Freeman, the health department’s head of noncommunicable diseases.

Prostate cancer accounts for nearly a quarter of all cancers in black men in South Africa in 2011 in the National Cancer Registry.

But the condition doesn’t always cause symptoms in the early stages, warns Kalli Spencer, a urology lecturer at the University of the Witwatersrand.

Prior to being diagnosed with prostate cancer, Sibisi had been struggling to urinate for two years.

“I would go to the doctor and he kept on testing my urine and saying that I’m fine,” he says.

A doctor has to conduct tests to diagnose prostate cancer. The first is a digital rectal exam where the physician inserts a “gloved, lubricated finger into the rectum and feels the prostate through the rectal wall for hard or lumpy areas”, according to the Prostate Cancer Foundation.

If the doctor finds hard or lumpy areas, it will be followed up with a prostate-specific antigen blood test. This measures the level of prostatespecific antigen in the blood – high levels are an indication of problems with the prostate.

[WATCH] Why is prostate cancer more aggressive in black men?

It’s not yet known why prostate cancer affects black men worse than their white counterparts, but if you’re a black man over 40, get yourself checked.

Second opinion

It wasn’t until he collapsed at work one Saturday morning that Sibisi sought a second opinion about his condition.

“The [second] doctor told me something was wrong. After putting his finger in my number two, he told me I might have prostate cancer just like Mr Mandela and [Archbishop Desmond] Tutu – after that he took blood samples to be tested.”

A 2015 study published in the journal SpringerPlus found that more than half of men at a urology clinic in the Free State had not heard of prostate cancer. Only 10% could name three symptoms of the condition.

It’s not just patients who lack knowledge: it’s doctors too. Spencer says that general practitioners do not have enough experience with prostate cancer, because so few patients go for prostate check-ups.

With his results in tow, Sibisi, who was in his late 50s at the time, was referred to Chris Hani Baragwanath Hospital in Soweto. In December 2012, he was told that he had stage three prostate cancer and was started on treatment.

“I was devastated. I was very angry. I kept thinking ‘I run, I don’t drink, I don’t smoke. So how was it possible that I’ve got this thing?'”

Risk increases with age

The older a man, the higher his risk is of developing prostate cancer, according to the Mayo Clinic.

Spencer recommends that men go for an annual check-up from the age of 45. Men with a family history of the condition and black men are at an increased risk and should start their check-ups from the age of 40.

But Spencer says men are “notoriously bad” at seeking medical care.

“They only come once there’s a problem or once it’s too late. We see it a lot in the public sector where men present to us when the cancer has already spread to the bones and they’re paralysed.”

Men are worried about the digital rectal exam – when a doctor inserts a finger into the rectum to check whether the prostate is enlarged.

“For them it is the worst event of their lives. It’s humiliating. But it is a five-second process that is not painful and is strange more than uncomfortable. It’s a small sacrifice to make if the patient is to consider the lifesaving consequences of this important examination,” Spencer says. 

There is not yet a government policy on how to screen for prostate cancer. Freeman says the health department recently started to draft a policy but it won’t be ready in the next year.

A rock and a hard place

Doctors gave Sibisi two treatment options: he could either get injections or have his testicles removed.

In January 2014, he had both testicles cut out.

“It was a very difficult decision for me to take. I had to choose between life and my manhood. But I chose life,” Sibisi says. “I don’t regret it. I’m very happy because the cancer dropped by 60% and I was able to urinate straight after the surgery.”

Because of the side effects of the medication prescribed to him, Sibisi couldn’t urinate normally and had to use a catheter to drain urine from his bladder.

“I was walking around with that urine bag. It was like I wasn’t even human.”

Sibisi sits down on the bed and picks up a paperback book. He holds it up. It is the autobiography of the former Comrades Marathon runner and his close friend Bob de la Motte.

On the back cover of the book a man’s face is barely visible through the writing.

“That is a picture of me in 1985 after I was arrested for not having a dompas for the ninth time. It was on the corner of Bompas and Oxford roads in Rosebank. That day Bob had organised the media to come and take the photo.”

Turning the book around in his hands, Sibisi shakes his head in disbelief.

“I can’t believe he kept the photo all these years and I didn’t even know. He only told me after he had published his book.”

Iain Johnston was diagnosed with prostate cancer at the age of 55. (Oupa Nkosi, M&G)

Test for prostate cancer to prevent it

In 2010, Iain Johnston’s life ground to a screeching halt. He was 55 and diagnosed with prostate cancer.

“It took me a while to come to terms with it. The first thing you realise is that you are quite vulnerable. It dawned on me that life really is short. It was no longer a cliché,” says Johnston.

“I had gone to the doctor for my annual check-up. The doctor did a PSA or a prostate-specific antigen test, which is when blood is analysed to establish if there is a problem with the prostate.”

PSA is a protein released by the prostate. The blood test measures the level of PSA. A high PSA score could indicate that there is problem with the prostate.

Along with the blood test, Johnston’s doctor conducted a digital rectal exam where the doctor inserts his finger into the rectum to feel for any abnormalities. The exam forms part of a complete physical exam to check the prostate gland. The prostate, which is found between the bladder and the penis, produces part of the semen.

“My doctor was worried because my PSA levels were fluctuating too much,” he explains. “I also had an enlarged prostate and it was very hard.”

Johnston’s doctor referred him to a urologist who performed a biopsy, in which samples of the prostate were cut out and tested for cancer.

“Unfortunately it came back positive,” Johnston explains.

Prostate cancer is one of the most common cancers affecting men. In South Africa and around the world it is the second most common cancer in men with an estimated 1.1-million men being diagnosed with the condition in 2012, studies have shown.

The International Agency for Cancer Research says prostate cancer accounts for 15% of cancers diagnosed in men worldwide. More than 300 000 men died of prostate cancer in 2012.

South Africa’s national cancer registry estimates that prostate cancer accounts for nearly one out of five cancer cases in men in the country.

Johnston was shocked by his diagnosed because he did not display any symptoms.

According to the medical research organisation, Mayo Clinic, prostate cancer mostly doesn’t cause any symptoms in the early stages. Prostate cancer that is advanced can cause symptoms such as erectile dysfunction, problems urinating, or blood in the urine.

“Once the cancer was confirmed, my urologist gave me the options in terms of treatments available. That was when it really hit home.”

Johnston’s cancer was diagnosed in the early stages, so once he had a prostatectomy where the prostate and some of the tissue around it is surgically removed, he didn’t need to undergo any further treatment. But he does get periodic PSA testing to ensure that the cancer did not spread to other parts of the body.

“The operation put me out of action for about six weeks. That recovery period for me was the hardest part. Initially I tried to work like nothing was wrong, but I had to learn what my limitations were and make the necessary changes in my life.”

Six years later, at 61, Johnston’s cancer is undetectable.

When prostate cancer is detected early, before it spreads beyond the prostate, it can be treated successfully.

Kalli Spencer, a urology lecturer at the University of the Witwatersrand, says: “After radical prostatectomy researchers looked at overall survival, cancer-specific survival, progression-free survival and local recurrence at five to 20 years.

“Only three percent of patients died of prostate cancer. Five percent showed evidence of cancer spread to other organs and six percent had a local recurrence of cancer. Study participants had a median survival time of 19 years.”

Johnston has since joined the Prostate Cancer Foundation and runs the organisation’s patient affairs, which works closely with prostate cancer survivors and their families.

“My experience shows that if you catch it early, prostate cancer can be treated successfully. Men need to get a check-up. It is just once a year and it could save your life.” – Ina Skosana

Early detection is vital: Iain Johnston’s prostate cancer was detected before it could spread to other parts of his body. 

Ina Skosana was a health reporter at Bhekisisa.