Are you asking your doctor for evidence yet?
Did your doctor recommend a medication for you and you responded with, “How many patients have taken this drug for this condition and what % had a good or a bad outcome?” Did you ask your surgeon how many patients he operated on and how many were cured?
If your answer is no then you need to read today’s case report of a real patient who said, “Show Me The Evidence.”
This is the story about a real 65 year old man, who we will call Mike. Mike got diagnosed with localized low/intermediate risk prostate cancer. Localized implies that the cancer has not yet spread outside the prostate gland. The risk score is based on lab and pathology results from the biopsies of the prostate gland.
Mike’s primary care doctor referred him to a surgeon who, after reviewing Mike’s case, recommended a radical prostatectomy (removal of the prostate gland.)
Mike decided to get a few more “opinions” from other prostate cancer specialists.
One radiation expert recommended Brachytherapy (i.e. radiation.) Another doctor recommended “active surveillance,” which means doing nothing unless follow up tests reveal that the cancer has become more aggressive or is “progressing.” From there, surgery might be an option.
All of the doctors defended their recommendations with statements such as, “surgery has the highest survival rates” or “active surveillance has been shown to have survival rates, not much worse than surgery or radiation” or “radiation has similar survival rates as surgery but less side effects.” Mike had learned online how to ask doctors for real evidence. So he asked each doctor for their own survival and outcome data since he was already aware of the problems with incontinence and impotency. Mike asked each doctor, “what percentage of your patients died of prostate cancer with at least 10 years of follow up?” Although each doctor provided verbal testimonials of their excellent results (i.e. low rates of incontinence/impotence, lower then average death rates), none of the doctors had documentation that confirmed how many of their patients had died of prostate cancer over time.
When Mike asked for data from published studies, the doctors were able to remember some of the data, but not all of it. None of the doctors were able to reproduce an evidence report that summarized all the relevant evidence on treatment of prostate cancer in patients just like him.
Mike went online and visited many cancer site including the American Cancer Society, Milken Prostate Cancer Foundation, and many others. Much like WebMD, there was very little evidence or outcome data from real trials. There was no evidence on surgery centers or specific surgeons. All the websites had opinions and recommendations, and a few tidbits of data, but not one site summarized all the available evidence for patients or doctors..
At this point, Mike decided that he would only consider surgery or active surveillance given that he didn’t want to try radiation or cryosurgery. Although Mike could not determine the true risk of incontinence and/or impotency he knew that there was a risk with surgery and no risk with surveillance. Thus, the key question for Mike was, “Does surgery have much better survival rates then active surveillance in patients with low risk localized prostate cancer?”
Mike called a company called The Qure to do an evidence project on this question. The Qure contracts with another company called Doctor Evidence to find and aggregate outcome data for treatments of any disease. The evidence project brought in survival and mortality data from over 10 studies.
Here are some highlights of the evidence that were on patients similar to Mike that had surgery or active surveillance:
- Henry Ford Health System in NY/Michigan: At an average of 15 years of follow up: 15% of the 810 patients who underwent surgery had died of prostate cancer VS 34% of the 814 who underwent surveillance for a difference of 19%.
- European Hospital System: At an average of 13 years, 18% of 157 patients who had surgery had died of prostate cancer VS 29% of the 166 patients who underwent surveillance for a difference of 11%.
- VA System: At an average follow up of 10 years, 5% of the 122 who had surgery had died of prostate cancer VS 9% of the 131 who underwent surveillance had died of prostate cancer for a difference of 4%.
- John Hopkins Hospital: Only 2 out of 1300 patients who had undergone active surveillance had died at 15 years of follow up.
- Toronto Medical Center: 993 patients underwent active surveillance and it was estimated that only 6% of the patients had died of prostate cancer at 15 years of follow up.
- 4 different US Medical Centers: After treating over 20,000 patients with radical prostatectomy it was estimated that only 1% of the patients had died of prostate cancer. But the death rate went to over 16% if the type of prostate cancer was of intermediate risk (not low risk.)
After reviewing the above data (and other data not shown), Mike came to the following conclusions and quotes:
“Any risk of incontinence/impotency after surgery was higher then I could tolerate (zero risk with no surgery.) I would never want to wear diapers or piss in my pants or have sexual dysfunction. Those are intolerable side effects. However there appears to be survival benefit with surgery vs active surveillance which can range from 2-20% depending on when or where the study was done and other factors.
But the dilemma with surgery was that there is still a real possibility of dying of prostate cancer which can range from 1 to almost 20% depending on the surgeon, type of cancer, and other factors, some known and some unknown. I found it disturbing that this so called “curative surgery” still could lead to death due to prostate cancer.
The evidence was definitely not black and white. But based on the evidence, my personal preferences and instincts, and a review of the outcome data with my personal physician, I chose active surveillance given the survival benefit of surgery was not big enough to convince me to take a chance on incontinence or impotency.”
The above is a classic and ideal scenario. A patient gets diagnosed with a disease and gets multiple recommendations and opinions from a few specialists that conflict with each other. It is easy to find more of these same conflicting opinions and recommendations online. Getting all the relevant evidence from doctors and/or online resources is nearly impossible. For patients who want to use real evidence to make an informed decision, you have to find and hire a service or company to do the evidence project for you. Then you can review that evidence (+ your personal preferences) with your personal physician and hopefully identify the right treatment.
Evidence + Personal Preferences + Doctor Input = Best Healthcare.
See you next week with more patient stories.