My six-year battle with prostate cancer

What you need to know:

When he retired, Willie Otim expected to live out the rest of his life with his family. However, this dream was brought to a sudden halt after he was diagnosed with prostate cancer in 2012. He shares his story with Joan Salmon.

“I would frequent the toilet to urinate, sometimes more than four times in one night,” says Willie Otim, 71.
The father of six, retired from civil service in October 2010 and up to that time, he had never battled with disease and was physically fit and healthy. However, towards the end of 2012, he started experiencing problems with his urinal system.

Otim says even after urinating, he still felt that he needed to urinate despite no urine coming forth. At first, he thought it was a urinary tract infection and immediately started visiting a number of clinics in Lira Town for treatment.
Unfortunately, none of them was able to diagnose the disease as cancer and because he was living with diabetes, Otim pegged the frequent urination to the disease.

Diagnosis
However, despite religiously taking his diabetes medication, the situation did not change at all. In fact, his health deteriorated until he decided to travel to Kampala for treatment. He first visited International Hospital Kampala (IHK) and specifically told them he wanted to see the hospital urologist.

“I was referred to Dr Frank Asiimwe, a urologist. He examined me thoroughly and suspected that I could be having prostate cancer but needed confirmation by carrying out other tests. One of the tests was checking for Prostate-specific antigen (PSA), a substance produced by the prostate gland,” he says. Elevated PSA levels may indicate prostate cancer, a noncancerous condition such as prostatitis, or an enlarged prostate.

Otim adds that since he also needed to undergo a magnetic resonance imaging (MRI) scan, he was referred to Mengo MRI Centre while PSA level was checked at IHK.

“My PSA level was found to be at 11.8 which is way above the normal level of a person free from prostate cancer. The MRI scan also confirmed that I had prostate cancer,” Otim reveals. It was then recommended that he goes for an operation to remove the cancer.
A normal PSA level is considered to be 4.0 nanograms per milliliter (ng/mL) of blood. For men in their 50s or younger, a PSA level should be below 2.5 in most cases. Older men often have slightly higher PSA levels than younger men.

The operation
The operation was done on February 8, 2013 at Mulago National Referral Hospital. “At the time, the hospital lacked one very important equipment in the theatre without which my operation would not be possible. The equipment was hired at Shs650,000, which I had to pay,” he narrates.
Thankfully, the operation was successful. However after, blood and urine continued to ooze from the operated area which called for another operation. After a few days, he was discharged but still experienced a lot of pain and had to use a catheter for urinating.
The catheter was later removed because it was associated with frequent infections. The uncontrollable pain continued for some time until a scan was requested. “The scan showed that some gauze had been left in my stomach after the operation. Thankfully, it was successfully removed after which I felt very comfortable,” he says.

Treatment
He was then referred for radiotherapy with the aim of killing any cancerous cells that might have remained after the operation.
“In 2013, Mulago National Referral Hospital had an old radiotherapy machine serving many cancer patients that we had to arrive at the treatment room as early as 5am. I was given five dozes of radiotherapy,” Otim says.
While undergoing radiotherapy, Otim says he felt extremely weak, passed blood stained stool and lost appetite. To counter some of these side effects, he was advised to take a lot of fluids, some of which were expensive. “Taking fresh fruit juice on a daily basis can indeed dig deep into one’s pocket,” he adds.

Review
After radiotherapy, Otim was advised to go for review after every three months. He did that all through 2015 and 2016, after which he stopped because he thought he was cured. “This was a mistake on my part because the review was supposed to be continuous and indeed, in late 2017, I started feeling back pain and getting restless,” Otim regrets.

He once again visited a few clinics where he was treated but there was no relief. After a short while, he had a bad experience where the nerve around the pelvic region started sending some kind of electric shock waves from his waist region to the feet. The following morning, he awoke only to find his legs paralysed.

“I was unable to balance my body, let alone walk. I then decided to travel back to Kampala for better diagnosis,” he says.
In Kampala, he went to IHK where he was admitted right away. “They took long to diagnose the problem and after one week, I was sent for another MRI scan at Mengo hospital where it was discovered that the cancer had affected my spinal cord, hence the paralysis,” he shares.

I was referred to Mulago Cancer Institute. “I spent six days at IHK and it cost me Shs6.5m in hospital bills,” Otim says. Admission to Mulago Cancer Institute would see him spend two weeks there and paying Shs100,000 everyday. This time, he received six doses of chemotherapy, of which each was administered after every 21 days. The effects of the chemotherapy were not any different from those of radiotherapy as he still felt extremely weak, passed blood stained stool, lost appetite and hair.

The review period was also after every three months and he was also advised to go for physiotherapy which he has been doing for the last one month. “I must say the physiotherapy has helped as I have been able to abandon the wheelchair and the four legged walker,” he says with a smile. He now comfortably uses crutches and has also been praying to the Lord for total recovery.

Screening
This November, UMC Victoria Hospital is encouraging men to “man up” and take action to live healthier, happier and longer lives by screening for prostate cancer.

Screening is available at all the UMC Hospitals in Bukoto, Kira road, Nakawa and Entebbe freely this November but can go for a fee of Shs80,000 after November.

Challenges
• Diagnosis of prostate cancer is very expensive. Willie Otim says to carry out an MRI scan he had to pay Shs750,000 while the second time, it cost him Shs1.5m.
• He also says facilities such as laboratories dedicated to testing for prostate cancer are not readily available in district hospitals except at Mulago National Referral Hospital. He had to travel from Lira every time he needed treatment. “The journey is so laborious, especially when you are not feeling well,” he says.
• He adds that cancer drugs are not always available at Mulago national Referral’s pharmacy which left him with only one option of buying the medicine from private pharmacies whose prices are so high.
• There is an ever increasing number of cancer patients yet the facilities are not increasing in number. For example, there were times when he and other patients would have to be placed in the corridor due to lack of space.
• The number of doctors specialising in cancer treatment is small. That means that the lines to see the few doctors available are long.
He was restricted to a wheel chair and that greatly inhibited his movements and increased his dependency on people.