If you want to know how well the medicine works, ask the patient

It was an invitation that made no sense. I was asked to be a special guest of the South Korean Ministry of Tourism and KMI International, a company that markets medical tourism. Why me, I wondered? As I re-read the invitation, I remembered another strange offer I received in the 1970’s during a tense period in Israeli-Arab relations.

“Hello Dr. Goldberg,” an official from the Jordan Ministry of Education had said. “We’d like to know if you would be interested in coming to Ramallah to conduct a seminar on stuttering therapy this summer.”

At that time I was a Professor in the Communicative Disorders Program at San Francisco State University. The caller said he just finished reading a book I wrote with a colleague on the diagnosis and treatment of stuttering. When I declined, saying I always spent the summer with my family, he offered to bring them to Ramallah with me. As he explained the training program they envisioned, I knew I couldn’t do it alone. I asked if I could bring my co-author, Richard Culatta.

“Of course,” he said.

I called Rich and explained the proposal. After numerous “ah-ahs,” and “I see’s,” Rich said, “So let me see if I have this straight. In the middle of one of the most tense periods between the Arab world and Israel, an official from Jordon invites you, Stan Goldberg to come to his country. And when you decline, he sweetens the pot by offering to bring the entire Goldberg family.“ For whatever reason, I saw nothing alarming about the offer. “Alright, I’ll come,” Rich said, “But when we exit the plane, I’ll be wearing the tee-shirt that says, “I’m not the Jew.”

The invitation

I thought about that 40-year-old invitation as I reread the email from Curtis Poling, the Chief Advisor to KMI International. In the morning there would be an official ceremony at the Proton Beam Therapy (PBT) facility, then, for the remainder of the day informational sessions with the medical staff. I had convinced myself in the 1970’s that the official didn’t realize “Goldberg” was unequivocally a Jewish name and in 2010 I was sure Curtis believed I was a medical doctor. I emailed back that he made a mistake since I wasn’t a physician, but rather someone with a Ph.D. in speech-language pathology. My mother had a simple way of explaining my occupation to her friends. “No, he’s not a real doctor. Not the kind that helps people. He does something with children’s tongues.”

I was certain that Curtis was just as much in the dark about what I did as was my mother. But he wrote back stating it wasn’t a mistake. I was invited because of my publications on the health crisis in the United States and experience as a prostate cancer survivor. I accepted and looked forward to a relaxing six days in South Korea.

“How was it?” my wife asked when I returned.

“Gracious, chilling, delightful, jubilant, spiritual, and complicated,” I said.

The first five emotions

I’m not known for being a “gusher.” I try to speak and write with moderation, even when I passionately believe in something. But that’s not possible when I think about South Korea. During my stay I experienced a roller coaster ride of emotions.

There was the continuous graciousness of the Korean people and expressions of dignity arising from the richness of their ancient culture.

I was chilled, as my pedestrian knowledge of the North-South conflict was replaced with palpable tension, when, as I stood in a building where the demarcation line divided the North from the South, a North Korean guard, no more than 10 feet away, stared at me through a window with more hatred than I experienced during the march from Selma to Montgomery in 1964.

I was delighted, spending a morning with a staff member of KMI International who told me about her life as she drove me through Seoul in search of bamboo flutes.

I became jubilant, walking into a four-seat restaurant ordering breakfast in English (which the elderly owner didn’t understand) and having my unintelligible words transformed into an amazingly delicious bowl of bubbling pig’s innards and vegetables that I ate as we watched a Korean game show and laughed hysterically.

And finally, I glowed in the spirituality that engulfed me as I dedicated one of my new flutes and an improvised song to a four-story tall statue of the Buddha as the sun rose behind a 1000-year-old Monastery complex.

The complicated part

As I learned about PBT my euphoria disintegrated. Not because of the therapy or anything I heard, but because discussions of therapy options brought back memories of a 7-year-old medical decision I made that effected my life. PBT is one of various approaches for the treatment of prostate cancer as well as other cancers where a tumor is present. It is not a treatment option for me now since my tumor along with the prostate in which it was partially encased were removed seven years ago.

At the time of my decision, PBT was still thought by many in the medical community as experimental. My cancer was too aggressive for watchful waiting and with a Gleason score of 7, the use of radioactive seeds was not appropriate. The only options left were either surgery or external beam radiation.

Without any medical training, I had to make a decision that would effect the quality and possibly the length of my life. What I knew came from medical journals, anecdotal stories told by men with prostate cancer, and unsubstantiated claims made on the internet. I decided to contact a highly respected oncologist in San Francisco.

“Well, it’s six-of-one, half-a-dozen of the other,” he said when comparing the benefits of surgery and external beam radiation. I wasn’t impressed with folksy wisdom coming from a graduate of the Harvard School of Medicine.

“With surgery you have a 85% probability of surviving at least five years. With external beam radiation you have an 81% probability.”

He leaned back in his chair as if waiting for me to look relieved. Although I liked the 85 and the 81 percentage figures, my mind was drawn to the percentage of failures. For those of us with a potentially deadly form of cancer, it’s hardly a “half-empty, half-full” sophism. What we experience looking at “non-survival” figures can be as frightening as what I saw on the face of the North Korean guard.

“With my cancer,” I said, “which of the two failure groups do I have the greatest probability of falling into?” When he couldn’t answer my question, I persisted. “So are you saying that if I die, I chose the wrong treatment?” He was even less pleased with that question.

How could I be expected to intelligently choose the best treatment when knowledgeable members of the medical community were reluctant to take a position based on existing data? And if I would have known about PBT, would I have chosen it, rather than surgery or external radiation? If I had chosen PBT, it would have been a wrong decision, since my cancer had already spread outside of the prostate gland into the surrounding tissue and into one lymph gland. It’s detection was only possible with the surgery option. And since PBT only targets the tumor and an area between 1 and 2 centimeters surrounding it, the cancer would have remained.

That was seven years ago. And as I learned in South Korea, my question to the oncologist is still unanswered. Yet, the answer is as pressing today for the 230,000 men in the United States diagnosed annually with prostate cancer as it was for me. As someone who was steeped in a tradition of clinical research, I wanted to base my decision on data, but was left with anecdotal evidence.

There is much that has been written about the benefits of PBT including its minimal sides effects, something that for those of us with any form of cancer is as important as longevity. And for someone without insurance, or whose insurance company won’t cover it, treatment at one third to one half of the cost in the States becomes attractive. In some cases, financing is even available. As promising as PBT is, I was still struck with the absence of solid data that people with cancer need if they are to make “informed decisions” about their treatment.

According to the medical staff at the National Cancer Center in Seoul, compelling comparative outcome data is still absent—not only for PBT but for most other intervention protocols. Without boring you with details, the type of outcome data thought “relevant” to many medical researchers is difficult to obtain since it would involve treatment versus no treatment. While scientifically appropriate, it would be unethical to withhold treatment from someone with a treatable deadly condition.

With insufficient comparative data, adherents of each approach defend what they do, more on past experience and less on comprehensive research. While failures are statistically small with all approaches, nobody is still able to tell those of us with the disease who will fall into a failure group—that is, until we die.

The legacy of seven years

The questions I posed seven years ago to the oncologist still can’t be definitively answered today, and other questions dealing with quality of life issues are rarely addressed as appropriate for cancer research.

One often hears the mantra that consumers need to be proactive and be intimately involved in the medical decisions that effect their lives. I agree, but decisions should be based on solid evidence, not just personal conviction.

Years ago, when I was doing stuttering therapy, a client was adamant about going through “rebirthing” therapy as a way of experiencing the moment when he began to stutter. I didn’t say, “Well, if that’s your choice, fine,” or “six-of-one, half-a-dozen of the other.” I told him the therapy was ludicrous.

I would like to think that treatment is driven by research, but I’m not convinced of that. If it was, then comparative studies looking at longevity and quality of life would be more rigorously investigated. Regardless of why these questions are not adequately addressed, I believe those of us with cancer are being ill-served.

There’s an old Arabic saying, “If you want to know how well the medicine works, don’t ask the doctor, ask the patient.” To paraphrase this wise thought, if the medical community wants to know what’s important to address in prostate cancer research, don’t just ask a disease-free 35-year-old researcher; involve those of us whose lives have been changed by cancer.

Without sounding like a travel agent or a specific treatment advocate, I believe South Korea is a country where one’s spirit can soar and PBT is a cancer treatment protocol worth investigating for anyone with a solid mass tumor.

But despite my many transformative experiences, I’m still haunted by the question “Would I have chosen PBT over surgery?” I don’t have the foggiest idea what I would have done seven years ago if I added PBT to the mix of treatment protocols I didn’t fully understand.

Unfortunately, what I find tragic today is that most men facing treatment for prostate cancer are just as confused as I was seven years ago. Asking patients to choose the intervention that will have consequences effecting the quality and length of their lives is often a cop-out for the medical community. Patient involvement doesn’t negate physician responsibility for the decision. Nor should research be confined to the easier, cleaner approaches of studying cancer. Unlike pure research, our lives are messy and there needs to be a bridge between the two. I often wonder if anyone in the medical community is listening.

Stan Goldberg is a writer and cancer survivor.

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  • Anonymous

    Hello Stan, you explained the still existing turmoil that continues to befront the man diagnosed with prostate cancer.  And as in the past it behooves every such man to research and study this insidious men’s disease to at least develop at reasonable understanding of treatment options, the side effects that may accompany them, the remedies to those side effects, and survival time attributed to those treatment options.  There still are no absolutes, so we pray we make the right decisions in determining a treatment option.  It is important to never look back as to “what if?”  That can cause unnecessary stress, and stress is the last thing we need in our lives since it can exascerbate many ailments.  You know me as an advocate and mentor, and as such I can only provide suggestions to be discussed with one’s physician that are based on personal research and study of our disease..

    • stangoldberg

      Thanks for the response. I agree completely with your suggestions. What has always concerned me is why those of us with prostate cancer seem to rely more on our limited knowledge of the physiology of the disease than those with other diseases (e.g., breast cancer).

      It may be an oversimplification, but I think one of the reasons may lay in the reluctance of men to champion research on prostate cancer, which has resulted in lower research and public empathy. I wrote an article exploring this topic.

      PROSTATE CANCER RESEARCH FUNDING AND MALE VANITY
      http://stangoldbergwriter.com/about/prostate-cancer-research-funding-and-male-vanity/