One Patient's Story
By Angela Generoso
Reviewed by William C. Shiel Jr., MD, FACP, FACR
Benjamin Miller* was shocked to learn he had prostate cancer.
"I had absolutely no family history of prostate cancer," Miller says. "I was very active, had no symptoms, and had an excellent diet."
Miller has since spent a great deal of time over the past five years mentoring men who have been recently diagnosed with prostate cancer. He generally avoids suggesting one treatment option over another, but spends even more time answering the questions he says that doctors won't answer.
"There are so many details that the doctors don't tell you because they don't want to spook you," Miller says.
He believes the biggest piece of advice he can give other men experiencing the same condition he struggled through would be that it never hurts to double-check, stressing the importance of testing and re-testing to ensure complete accuracy.
Miller was diagnosed in 2001, and quickly became an extremely well-informed prostate cancer patient. Prostate cancer is a malignant tumor made up of cells from the prostate gland. This tumor grows at an extremely slow pace and usually stays within the prostate gland for years.
Miller's battle with prostate cancer began with an annual physical, in which a Prostate Specific Antigen (PSA) blood test and a Digital Rectal Exam (DRE) were included. His family doctor detected no irregularities by touch during the DRE, and his PSA was fairly normal at a 3.6 level. However, the number had risen over a period of three tests during the last two years, which caught his doctor's attention.
According to Miller, a rise of .75 percent or greater per year can be an indicator that cancer is present, and many doctors miss this detail as they rely instead on the most current PSA and DRE results.
Miller's doctor sent him to a urologist to do a biopsy, but he decided to have a less-invasive FPSA test done to measure the percentage of free versus bound PSA. The report came back with a 13 percent free PSA.
"That's not good because anything under 20 percent free count is an indicator of cancer," he says.
Looking to be extra careful, Miller had another FPSA test done which reported back the same 13 percent.
He began to get concerned.
"At that point, I figured I had better go have a biopsy," he says. "It's a procedure where they lay you on the side under a mild anesthetic, go through the anus and take clippings from the prostate. My doctor took 10 clippings. If they do only six, they might miss the cancerous parts, and my doctor preferred to do more than less to be sure. This caused more trauma to the prostate: a little pain and some bleeding."
But when the lab report came back, it was negative for cancer.
"On one hand, I was happy, but on the other hand, if I hadn't done the two FPSA tests, I'd be less skeptical."
With two tests reporting that something was wrong and a distrust of the lab's ability to be right all the time, Miller sent slides of the biopsy off to John Hopkins University to be reassessed.
The original lab assured Miller they would reexamine the biopsy as well, and one week later, he received both results: cancer.
"The original lab came back and apologized," Miller says. "It never hurts to double-check again. I knew enough of the fallibility of medicine to know to double-check the process."
When examining the biopsy, Miller's doctor was looking for differentiation.
He was fortunate his cancer was encapsulated, in that it had not spread outside the prostate. However, more uncertainty was ahead of him.
"It was pretty conclusive that I had cancer," he says. "But you never, ever really know if you actually have it until they open you up and remove your prostate. Five percent of the time they find it was a misdiagnosis and there isn't cancer."
At that point, Miller was getting worried as he started realizing this was going to be a life-changing event.
He began to get anxious as he examined the possibility of impotence, incontinence, and other symptoms of the aftermath of prostate cancer surgery. Together with his wife they did so much research that his doctor declared him to be the most knowledgeable patient he had ever had.
"The more I researched, the more confused and anxiety-ridden I became," he says.
Miller chose to undergo a radical prostatectomy, a surgical procedure in which the entire prostate gland is removed in order to remove the cancer completely and prevent its spread to other parts of the body. Today, prostate cancer patients can choose to under go laparoscopic robotic surgery, which is less invasive, more accurate, and easier to recover from.
While Miller anticipated his surgery date, he decided it was best to be prepared for the worst and had a will and trust made.
"It was the first time that it crossed my mind that I could be dead in two weeks and my wife would be left alone," Miller says.
The surgery went well. After the surgery, Miller was sent home with a catheter attached to a urine bag that he was to wear for seven days, and every one of those seven days he worried about the day the catheter would be removed.
"That caused me as much anxiety as finding out that I had cancer," he says.
Throughout the seven days after his surgery he managed on two Tylenol a day for the pain. Although it hurt to laugh or cough, Miller's recovery was fine.
Then came the much-anticipated day to have the catheter removed. Miller stood naked in front of his doctor, anxiously waiting for what was to come.
"First the catheter was deflated. I didn't feel a thing. Then he put his finger up to my eyes and asked me to follow it," Miller says. "As I was being distracted by the finger he slipped the catheter out of me with his other hand. What a ruse, but what relief. I had spent seven days worrying about this moment, and it turned out to be absolutely nothing."
Miller was then told to sit down with a Depends diaper underneath him. He was told to stand up quickly, and when he did that he asked Miller if he had urinated on the diaper.
"I said no, and he said okay throw the Depends away because you're never going to need them," Miller says.
Although incontinence was not an issue for Miller, he began to worry about impotence. Six weeks after the surgery, he was given a prescription for Viagra and told sex shouldn't be a problem. However, it wasn't quite the same.
"Thirty-five percent of men, no matter how good the surgery, suffer erectile dysfunction, and I was one of those," he says. "No ED medication has helped me so far, and the side effects are certainly not helpful. I'm at about 80 percent of performance with or without meds. I suppose that is as good as it's going to get."
Yet through it all he feels he has been fortunate. The biggest challenge he faced was the idea of dying of cancer, and he is happy he was able to successfully survive the surgery.
Today Miller anticipates his 10-year mark, the time when he will know he has completely won his battle with prostate cancer.
"Prostate cancer is not a death sentence," he says.
*Name has been changed