How One Family Tackled The 'Team Sport' Of Tough Prostate Cancer Choices

I was cutting the rind off a pineapple when my father called to tell me he had cancer.

It was his prostate, and they had caught it early. He had been offered the three accepted treatment options for low-grade prostate tumors: surgery, radiation or active surveillance, which involves no immediate treatment of the cancer. Essentially, the patient undergoes regular testing to monitor the cancer's progress, and can be treated if and when it's needed.

My first reaction to the option of active surveillance was "No." "No, no, no. No." A cancer diagnosis without any treatment seemed ludicrous. Even for prostate cancer, known as a sloth in the oncology world.

Cancer experts will tell you that the rise of active surveillance in recent years is a major step forward, reflecting doctors' deeper understanding that cancer is not just a black rot creeping from organ to organ.

Advances in clinical imaging and diagnosis have created hues and shades of cancer. Some of those shades are darker and more dangerous. Others are passive and harmless, needing nothing more than observation — in fact, treating these cancers can cause the body harm for no good reason.

But my family's reaction is a reminder that for much of the public, regardless of education, those distinctions remain too hard to absorb. For us, all too often, cancer is still the bogeyman.

Now, He Knows It's There

My father, Neil Marshall, is 71 years old. Other than smoking a pipe and drinking Orange Fanta instead of water, he's remarkably healthy.

Before his diagnosis, he hadn't experienced any symptoms stemming from the cancer. Everything had been functioning normally when his annual screening revealed an elevated PSA level and his doctor recommended a biopsy.

This cancer was having no discernible effect on his life. Except after the biopsy, he knew it was there.

Dad is a computer programmer by trade, so he likes to work with all the data he can get his hands on.

“When I left the urologist's office, it was like, ‘Well, I got three choices,’ ” he said. “'I've got to get real smart about what these three choices are.' ”

He did some digging around on the internet to learn about the options. (I have begged him and my entire family repeatedly not to do that, because Dr. Google will convince you that you have only minutes to live.) Specifically, he read up on active surveillance.

It didn’t sound appealing to him.

“Active surveillance seemed to be more of a ‘let’s hide our head in the sand [approach],’ ” he said. “Just wait until it’s almost going to kill you, and then you can talk.”

That attitude toward observation versus treatment prevailed until recently, according to Dr. Otis Brawley, chief medical officer of the American Cancer Society.

Brawley recalled a patient he saw about 15 years ago who was a bad candidate for treatment. The patient had chronic lung and heart problems, including several heart attacks and bypass surgeries, and he was demanding surgery for his low-grade prostate cancer.

Brawley was attempting to explain the benefits of observation. "The man slammed his fist down on my desk and said, ‘Goddamn it, I’m an American. You cannot tell me I have cancer and we’re going to watch it,' " he recalled.

The man slammed his fist down on my desk and said ‘Goddamn it, I’m an American. You cannot tell me I have cancer and we’re going to watch it.'

Dr. Otis Brawley, American Cancer Society

While the rush to treat dominated until the mid-2000’s, a greater understanding of prostate cancer has begun to overwhelm what Brawley calls “the American prejudice that all cancer needs to be treated.”

“What men were hearing was, ‘you got screened, you got diagnosed, you need to be treated next week,’ ” he said. Now, clinical trials in the past 10 years have changed the course of treatment, Brawley said, such that “today, well over half [of tumors] are being observed, and most of those that are being observed will never be treated in the man’s natural lifetime.

“We’re at a point in time,” he said, “where there’s a group of men that need to be treated, there’s a group of men who don’t need to be treated, and there’s a group of men who are in a gray area.”

After speaking to his urologist, my dad seemed to fall into that gray area.

Scary Pictures And Pink Ribbons

I spent the next few weeks wondering how the family would cope if my father chose active surveillance. Could he live with that? Because I felt certain my mother, Sheila, couldn’t.

“It was upsetting,” she said. “Because it’s that word. You don’t want to hear that word.”

My mom told me she hadn’t expected the biopsy to be malignant. My father’s Prostate-Specific Antigen (PSA) Test had usually been in the 3.0-4.0 range. That latest reading was 6.5 — not astronomically high and within the boundaries of error. So, my mother did not think there was anything to worry about. And then there was.

“You throw that 'C' word out there,” she said. “And it’s there. ... Every time he had a twinge or something …'Oh my god! What is it?' ”

Mom's response did not surprise Brawley.

“We have spent a large amount of effort and energy over the last 100 years to teach everyone that cancer is bad," he said. "Very commonly, it is the wife who is more concerned about the cancer diagnosis than is the husband who has the prostate cancer diagnosis.”

Many wives' reactions come from an ingrained fear of breast cancer, he said. On top of that, it seems the public’s understanding of cancer, in general, is broadly based on scary pictures and pink ribbons.

“When I diagnose cancer as a physician today, I’m using a 21st-century definition,” Brawley said. “That 21st-century definition involves all of my new imaging technology and some genomics studies. And we have not changed the public’s definition of cancer.”

Wives And Daughters

That public includes me. I wanted my father to get surgery, too. Even after my own research into active surveillance and the over-screening that leads to over-diagnosis and overtreatment, I shared his "head in the sand" theory. I wanted it gone yesterday.

I voiced none of those concerns to my father, though, because I thought it wasn’t my place to inject my feelings into his assessment.

My mother was a different story. On one hand, she could never understand what it feels like to have a bum prostate, or to lose one altogether. On the other hand, the effects of disease progression as well as treatment could have profound physical and emotional effects on her.

Active surveillance would mean that if you had sex yesterday, chances are you could have it again tomorrow and next month. Surgery or radiation could mean the opposite.

Making treatment decisions is often a team sport. After 45 years of marriage, my mother needed to be in the huddle. But in the end, the patient is the quarterback, calling the ball.

“The answer is a shared decision-making approach,” said Dr. Michael J. Barry of Massachusetts General Hospital, past president of the Society for Medical Decision Making.

I asked him how spouses should be involved with prostate cancer treatment decisions. He said partners need to help patients list and prioritize their fears about treatment.

“Those can be some of the most productive conversations,” Barry said. “Because often you don’t know what other people care about until you have the conversation.”

Spouses, Barry said, should help the patient work through which symptoms and side effects are the scariest. “Incontinence and sexual dysfunction are things that people can imagine,” Barry said. “A spouse might help think through, ‘How bad would that be if it happened to me?’”

Because I slept in a bedroom across the hall from my parents for years, I would have assumed that erectile dysfunction was my father’s greatest fear. I was surprised to find out I was wrong.

"You get to be 71, and it's just not the same as it was when you were 23," he told me.

And he wasn't particularly afraid the tumor would kill him; he didn't think it would. It was just one particular side effect that worried him.

“The thing I was most concerned about was that I was going to have to walk around in diapers the rest of my life,” he told me. “In the back of my mind, I said ‘Boy, life could be really awkward if you had to walk around with a bag taped to your leg, or having to wear Underoos or whatever it is.'”

“Depends,” said my mother.

“Yeah, exactly,” he said.

'Let's Get On With It'

After months of discussion, my parents traveled two hours north of their Virginia home to get a second opinion from a leading specialist at Johns Hopkins. Dr. H. Ballentine Carter took a look at my father's tissue samples and imaging, and told him that his tumor grade was a bit higher than originally diagnosed. That small jump removed active surveillance as an option.

My dad sat down with a radiologist to talk about a non-surgical treatment option, but in the end, he chose a radical prostatectomy. He told me his decision was made easier by his instant rapport with Carter and his trust that the renowned Hopkins prostate cancer team could spare as many nerves and functions as possible.

“That gave me a tremendous amount of confidence,” he said. “Once I knew that I had someone in my corner who knew how to get things done right, I figured let’s get on with it.”

My mother and I were both very happy with his decision. But more importantly, so was my father. After talking with Carter, he could see the shades and the gradations of prostate cancer. He knew it wasn’t a bogeyman. But, still, he wasn’t comfortable knowing it was there.

I talked with my parents this Thanksgiving, four months after his successful surgery. All systems seemed to be back online, and Dad had no problem taking down bottle after bottle of Orange Fanta.

"It's like it never happened," he told me.

My mom sounded similar: "It was like a little procedure. It's done."

For many men, prostate surgery recovery is difficult and involves side effects that change their quality of life. Incontinence and erectile dysfunction are common.

My dad's decision worked out well for him, but if there's one thing I've learned from all this, it's that making cancer treatment decisions is complicated.

Sometimes there's only one right answer, and you have to act quickly. But with cancers like prostate cancer, some tumors can often give you more time to gather information and carefully consider what you can live with — and what you can't.

Ideally, you don't have to make that decision alone.