The man I will call Paul remembers when he was first diagnosed with prostate cancer about a year ago. It started with a PSA of 4.3 ng/mL on a routine annual physical. A PSA of 4.0 ng/mL is a widely used cut-off point beyond which doctors send you off to a urologist to determine whether you have cancer. He was referred to a urologist where he had a digital rectal exam, a transrectal ultrasound and biopsy under local anesthesia. Paul remembers it was uncomfortable, with bowel urgency and some blood in the urine. He reminded himself, that in the future, for tests like these, he would request general anesthesia. “Once I had those symptoms, I thought this is a preview of what is going to come,” he said. By that, he meant the possibility of unpleasant side effects, such as impotence, urinary incontinence, and bowel problems that have been associated with treatments for prostate cancer.
When his urologist discussed the biopsy results, he told Paul that his Gleason score was 6 and that he had early-stage prostate cancer. Like many people who learn of a cancer diagnosis, Paul told me that once you are diagnosed, you enter a “world of cancer that you take with you until you die…At first, I told no one, but I found myself thinking about it every day. I knew that I had to learn more about it.” This is a story about Paul’s explorations to figure out what to do about treatment.
Paul is a 58-year-old Manhattan lawyer. He describes himself as a happily married man, with two children, and he wants to live to see his grandchildren grow up. After listening to his odyssey over the past year visiting a handful of doctors in New York City and a specialist out of state, Paul described himself as a “prostate cancer junkie.”
As a lawyer, Paul is accustomed to reviewing a lot of material. He knew that his prostate cancer was early, low-risk, and that he had some time to evaluate what to do next. Sitting with his first urologist as they reviewed his initial biopsy report, Paul told me that his “first impulse was: this is the ‘c’ word – get it out of here.” He had no preference for treatment.
When his first urologist told him the news, the urologist said: “I would not recommend that you consider active surveillance.” According to the National Cancer Institute, “active surveillance—in the past also called “watchful waiting” and “expectant management”—refers to a strategy of forgoing immediate treatment after a diagnosis of prostate cancer in favor of regularly scheduled testing and clinical exams to closely monitor the disease…If, at some point, there are indications that the disease is progressing—such as significant growth in the tumor or a rapid increase in PSA level or higher tumor grade on biopsy—definitive treatments such as surgery or radiation therapy can be pursued.”
Exploring Prostate Cancer Treatment Options
Paul began to explore the numerous treatment options available, the reputations of physicians and hospitals in New York, and began to weigh the information. During the last year, he read three prostate cancer books cover-to-cover that he picked up at Barnes and Noble, he downloaded peer-reviewed journal articles from the Internet, he changed his diet, and he went to the gym. He had two imaging studies: a CT scan and an MRI.
Reflecting on one of his first visits, where he was exploring robotic prostatectomy, Paul recalled that the urologist was “not so experienced, but reassuring about side effects.” If he was going to pursue robotics, Paul wanted to see a doctor who was widely regarded as a top robotics doctor.
Paul could tell you the learning curve for doing a particular procedure well, as it was highlighted in the medical literature. In fact, Paul walked away from a doctor who he thought did too small a number of procedures. He understood the nuances in discussions about postoperative side effects. For example, in discussions of sexual potency, he knew that doctors often discuss it in terms of potency beforehand, surgical skill and experience, and that potency could be described as full potency, potent but only with Viagra, or whether you would need a pump. Paul didn’t take discussions about side effects lightly. “Sex is important to me,” he said. Even though some urologists and radiation oncologists claimed that they were better at preserving potency, he knew that there are no guarantees.
Most everyone spoke of what is called “definitive” treatment, having some surgical, radiation, or ablative treatment to eradicate the cancer. What was especially striking was “that no one was objective, everyone was convinced that the procedure that they were selling was the best, resulted in the fewest side effects, and resulted in far fewer than their competitors,” he told me. Put another way, Paul said: “Nobody was procedure-neutral.”
Paul did not rule out any procedures. He looked for doctors and literature on radical prostatectomy (surgical removal of the prostate) , brachytherapy, radiation, intensity modulated radiation therapy (IMRT), and the cyberKnife radiosurgical system. He weighed active surveillance. Paul hired a cousin who did medical research to look into the cyberKnife. And when he was taken with robotics as a possible way to minimize side effects, his cousin warned: “This is just a fad. I would not do robotics.” One doctor pushed him to have some extra assays done, saying that if they came out in a safe zone, he would follow him for active surveillance. Paul gave in, but later learned that the assays had not been validated.
Considering Active Surveillance
Paul looked to another doctor in New York who came highly recommended. That doctor agreed that if a confirmatory biopsy done at his institution put him in the same risk category as the first one, he too would follow him with active surveillance. He arranged to have another biopsy and went in for his results. But his hopes were dashed. The second biopsy revealed cancer in more cores than the previous one (9 of 16 cores, with as much as 30 percent cancer in some cores vs. 3/12 in the first biopsy) . Paul no longer satisfied that institution’s active surveillance protocol. “He couldn’t tell me my cancer will or won’t progress, the point is it could progress, and it is more likely to progress than cancer that comes within their active surveillance criteria.” More than any other doctor who he had seen –and he saw about five specialists—he trusted this doctor and described him as the “most unpushy, the least biased.” When they discussed treatment approaches, the doctor told him that he was currently doing mostly robotic prostatectomies, reserving open procedures for more complicated cases. Paul left the office to review his options.
His last step was visiting a urologist out of state who authored several journal articles about active surveillance. Paul wanted to know his viewpoint on whether active surveillance was safe for him. Active surveillance is not widely endorsed in the United States, but articles in top-tier journals are raising concerns about PSA screening resulting in an epidemic of overdiagnosis of prostate cancer and overuse of definitive treatment, (for example Thompson and Klotz, 2010; Albertsen, 2009; Klotz, Zhang, Lam, Nam et al., 2009). The American Cancer Society recommends discussing PSA screening rather than doing it automatically; it also recommends discussing treatment options, including active surveillance, so individuals can weigh their risk tolerance and make an informed decision. The Foundation for Informed Medical Decision Making has been at this a long time, and promotes open discussions with patients about PSA screening and prostate cancer decision-making and striving to understand the patient’s voice.
Paul wanted to hear whether this last doctor was comfortable with him trying active surveillance. Paul could have the PSAs in New York and visit occasionally for follow-ups. Clear endpoints for going off active surveillance would be set. The doctor emphasized that the natural history of low-grade prostate cancer is not understood well enough to make clear predictions. Paul decided that he would give active surveillance a try. “He warned me, though, that many patients cannot hack it because of anxiety,” said Paul. “I was told that within two years, 25 percent or more patients drop out, and get definitive treatment.”
Paul began active surveillance. In fact, in the first week and a half, he said he was racked with insomnia. That too, passed, and he is feeling comfortable that he will be able to do active surveillance. One observation that Paul made struck me: he feels that he needs to overcome this sense that he is doing nothing. He feels an urgency to take action. Paul went for a consultation for good nutrition for prostate health. He bought supplements from a urologist in Manhattan, but stopped them when he got diarrhea. Paul drinks pomegranate juice, takes extra lycopene (a tomato-based antioxidant), and he pays close attention to new findings on nutrition and prostate procedures. He goes to the gym regularly.
In the year following his 4.3 PSA, that PSA has never been replicated. His PSA has consistently been around 2 or under. For now, he is pursuing active surveillance. Paul keeps reading and is tempted to visit doctors for their opinions. He thinks that he is safe right now, but he is open to hearing the arguments of physicians that he trusts. “I wouldn’t do it if I didn’t think it was safe. I want to live to see my children’s grandchildren.”
Thanks Laura. This is a wonderful post and a great concept. I look forward to reading many more accounts of the complexity of care.
This is a thorough and compelling post. I was struck with studies that Dean Ornish has done with early prostate cancer survivors, that have indicated that those w/early stage disease can benefit from changes in lifestyle, diet and exercise. I hope that Paul continues to do well. Thanks for a great post,
Thank you both for your encouragement. If I can encourage conversation about these issues, I will be happy.
Thanks for the post. Very informative – and also very troubling. Paul had the resources and time to consult several physicians. He was able to understand and evaluate verious options. Relatively few people have Paul’s resources. Your blog may help fill in the gaps for patients who have neither the time, money, nor ability to learn about treatment options without too much medical jargon. Your inclusion of key links is great!
I totally agree with you and was concerned that Paul has advantages (time, money, education) that many people do not have. Stories need to be told about people who don’t have easy access to care or can’t even find a specialist because they are not simply unavailable to care for them. I want to encourage readers to contact me at patientpov “at” gmail “dot” com so I put a face on those stories. I will respect your privacy, as I did with Paul’s.
Great post, Laura. If a man in my life was dxd with prostate cancer, this is what I would want him to do.
It is importannt to remember that PSA is a poor predictor of prostate cancer volume in men on alternative, herbal, and antioxidant therapies. Indeed, about 10% of men with “low volume disease” (which Paul does not have on his last set of biopsies) already have extracapsular disease. PSA-based followup is highly misleading. Although there are few ‘absolute’ answers in prostate cancer, the chance that a patient in Paul’s situation will have clinical problems if he lives the next 15 years is quite high. To be reassured by a lower PSA on such management is little better than having no PSA’s at all.
It can be difficult to find well-informed people on this subject issue, however you seem like you are aware of exactly what you are sharing! Thanks a lot
Making treatment decisions can be tough in the absence of structured information. On http://www.thedecisionaidcollection.nl, a multilingual comprehensive collection of decision aids can be found. Please consider it for PSA treatment decisions.
Interesting post!! I like the blog.
I wish Paul all the best, and thank him for sharing his story. I am concerned that others facing his issues might be reluctant to seek the necessary screening scenario to rule out prostate cancer. Ironically, Paul’s 4.3 PSA value, absent a significant finding on DRE, should never have led to a biopsy. He did not give his prostate volume or share any pre-biopsy BPH issues, so I can only assume that these findings were quite elevated. Even the venerable Johns-Hopkins has backed off the 4.0 value in recent years and has suggested an acceleration factor year over year as a more significant finding.
The prostate biopsy itself is hardly torture. Root canal is far more painful. The idea is to keep the lower bowel empty by enema and fasting, and then keep your sphincter muscles quiet while the scope is inside. The urge to defecate can be completely ignored because there is nothing in there except the scope. And the slight amount of spontaneous urination can be dealt with by asking for paper towelling to be placed under the penis once you are positioned on your side. There is never a need to engage either sphincter. If the sphincter muscles remain relaxed, the discomfort is greatly minimized.
I was very lucky … my values were off the chart yet the results came back negative. I can’t help but think Paul is placing too much value on the PSA score. Two biopsies have come back positive. Pre-biopsy predictors would now seem irrelevant. I hope the very best for Paul, and I urge him to consider acting while he is at his physical strongest. Yes, prostate cancer is a slow grower, but a grower nonetheless. Godspeed.