Delayed diagnosis

Hey there, time traveller!
This article was published 22/11/2021 (1730 days ago), so information in it may no longer be current.

Three years ago, Les Ferris was told he had three to six months to live. A year at most.

The urologist who gave Ferris his prostate cancer diagnosis in 2018 was the same one who told him months earlier that his prostate was fine — no lumps or irregularities. He also told Ferris to come back two months later and that his PSA — prostate-specific antigen — would be “normal.”

“My diagnosis has been plagued by doctor illness, doctor egos and bad luck,” says Ferris, 66, a farmer from the south central Manitoba community of Holland.

PSA is a protein produced by tissue in the prostate, which is a small gland that sits below the bladder in males. Prostate cancer occurs when the cells of the prostate begin to grow uncontrollably. According to the Canadian Cancer Society, one in nine men will be diagnosed with prostate cancer in their lifetime.

The PSA test is a key step in detecting prostate cancer early. The test itself cannot diagnose cancer. Instead, it measures the amount of PSA in the blood and determines if a man’s PSA levels are higher than they should be, which is an indication that something might be wrong with the prostate. From there, biopsies are conducted to detect the cancer and determine its severity.

The PSA level in blood is measured in units called nanograms per millilitre (ng/ml). The chance of having prostate cancer goes up as the PSA level goes up. For men in their 60s, a PSA level above 4.0 ng/ml is considered abnormal. In December of 2017, Ferris had a PSA level of 12.8. His urologist gave him an examination and told him that his prostate, though enlarged, was in excellent shape.

“It was never explained (to me) that only the back two-thirds of the prostate is accessible from a physical examination. If you have lumps at the front, they go undetected,” Ferris says. “The only sure way to know is through a biopsy.”

Ferris was then referred to another urologist because his previous one fell ill. The earliest appointment he could get was about six months later in July 2018. Nervous about his PSA level, Ferris asked to be seen sooner but his request was denied.

“We should have been doing more blood tests right away but I had to wait six months,” he says.

At his July appointment, Ferris had a PSA level of 50 and was told that it was “just a spike” even though his PSA tests showed a steady rise for two years.

“Because (I was) denied PSA tests over the previous six months, (the urologist) could not chart a steady rise in the PSA level,” Ferris says. “His conclusion was that this level was a spike up and I should come back in two months and it would be normal. No blood tests were asked for until the end of August.”

Ferris says he should have been tested again sooner.

“I’m sitting with a PSA of 50, how can you say it’s just a spike? OK, if you say that, why not do a blood test three weeks later instead of two months?” Ferris says.

Prostate cancer is the most diagnosed and most prevalent cancer in Canadian men. It typically affects men 50 years of age and older, with the incidence increasing with age. It accounts for 20 per cent of all new cancer cases in men, according to the Canadian Cancer Society.

Ferris’s next blood test in late August revealed his PSA had risen to 157, which prompted a phone call from the urologist saying “I think you may have cancer. I would like to do a biopsy.”

“If he had tested me three weeks later and my PSA had risen slightly, we could have gotten on it. But two months later, I was 157. That was incredible,” Ferris says.

All 12 samples taken in the biopsy were between 50 and 100 per cent cancerous with the average being 86 per cent.

“(The urologist) told me the cancer is too advanced to remove the prostate but that I could have a hormone injection that would starve the cancer,” Ferris says.

A common treatment for prostate cancer, hormone therapy works by reducing the amount of androgens (male hormones) or blocking androgens from being used. Androgens, such as testosterone, help prostate cancer cells to grow.

Hormone therapy alone can’t cure prostate cancer but it can shrink tumours, slow the growth of cancer cells and help you live longer. Ferris was given his initial hormone injection in November of 2018 at CancerCare Manitoba. At the time, his blood test revealed that his PSA had risen to 268.

When prostate cancer spreads, the bones are typically the first area affected. This was the case for Ferris — his CT and bone scans showed that the prostate cancer had spread into most of his bones, including his skull.

“The cancer is in almost every bone in my body,” Ferris says.

There were no guarantees that initial hormone injection would work. Ferris received another PSA test that December and was overjoyed to find out his PSA had dropped to 40. It continued to drop after Christmas, down to 25.

In February 2019, Ferris began oral hormone therapy and his PSA dropped steadily from 25 down to five by July. This seemed too good to be true. Unfortunately, it was.

In August, his PSA started to rise, which set off alarm bells. It rose slowly from 5 to 5.4, 5.8 and, within weeks, jumped to 16.8. The cancer had found another food source other than testosterone. So Ferris began chemotherapy in January 2020.

Since first receiving the news, Ferris has received numerous treatment regimens: hormone injections that began in 2018, oral hormone therapy throughout 2019, 10 rounds of chemotherapy from January to July 2020, and six Radium 223 injections from May to September of this year. (Radium 223 is a type of internal radiotherapy treatment for cancer that started in the prostate and spread to the bones and is also referred to as radioisotope treatment.)

Early detection is key for prostate cancer and a PSA test can help. For Ferris, he has been offered “life extension” as there is no cure.

“I’m planning on living now but when I got the news, everything I did was preparing to die,” he says. “I thought, I’m planning my death and how my wife is going to survive. That’s not healthy. But when things started to improve, it’s a whole different way of living.”

Ferris advocated for his health but he encountered several doctors who didn’t see the urgency of having a biopsy conducted earlier.

“If I knew then what I know now, my outcome would have been different. I trusted the doctors so much,” Ferris says. “None of the doctors explained that I could have cancer. It was total miscommunication. We all need to educate ourselves. It’s so important.”

Ferris wrote a blog detailing his experience and continues to update it throughout his treatment. For the last two years, he has shared his story with other men in hopes of helping them have a different outcome than his.

“I sent a friend of mine from Treherne, Man., my blog back in the spring. His PSA was very low; sitting at two. Then he went for a blood test and it doubled to four,” Ferris says. “They did further blood tests and then his PSA went up to six, then eight, then nine. Now he’s slated to go for his biopsy. He’s two years older than me. There’s early detection.”

He and his wife, Heather, send his blog to friends and family, truckers, sales people and his co-workers.

“I emailed (my blog) to all my cousins and I carry copies in my truck with me,” he says. “You’d be surprised how many people don’t even know what PSA is. Guys think they’re invincible and I did, too. We’re totally uneducated about prostate cancer.”

Ferris is now in a monitoring phase. He gets monthly blood tests and receives a hormone injection and IV bone builder every three months. If his PSA hits 8.4, he’ll undergo another round of chemotherapy.

This year, he’s joining Movember, an annual event during November to help raise awareness and fundraising efforts for men’s health.

“I kind of live four weeks at a time. I’m busy, have lots on the go and don’t think about cancer until I go for that blood test and then I think, ‘what’s next?’” Ferris says. “I’m eternally grateful for what has transpired in the last three years. I should’ve been on my deathbed two years ago and I’m still here. You learn to be thankful for each day.”

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