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Active surveillance (active monitoring, watch and wait, etc. – each with slightly different definitions) means you know you have a low risk prostate cancer (typically defined by a small amount of cancer in only a few of the biopsy cores and usually with a Gleason 3+3 score (some studies also include low volume Gleason 3+4 patients). Knowing this, you decide to not have treatment but just “keep an eye on things”. It all sounds so simple until you try to project what that means for YOU, and here is where the decision making becomes complex. Risk tolerance and rewards of decisions are psychological issues, not so much medical ones. Some people feel the thrill of jumping out of an airplane or off a bridge with a bungee cord more than compensates for the relatively small risk. Others don’t. For some men, ANY decrease in their sexual function or chance of incontinence is not worth the risks of treatment. For others, ANY risk of dying from prostate cancer is unthinkable. And, I would add – having counseled many couples – that the spouse’s feelings about sexual intimacy and survival vary considerably. For the record, the most common comment I hear from the wife is “We don’t care so much about sex, I just want George to be here” or similar, sometimes paired with the comment (regarding surgery vs. radiation) “I just want it out of him.”
With that background, Anthony D’Amico, one of the most prolific researchers and best analytic minds in our field, has written an editorial worth reading. In it he posits the question of whether the development of metastases, not death from prostate cancer, should be the better way of evaluating active surveillance. His primary analysis comes from looking at the ProtecT study, published last year in the NEJM. In that study, “82,429 men had a PSA test; 2664 received a diagnosis of localized prostate cancer (including 146 men from the feasibility study), and 1643 agreed to undergo randomization to active monitoring, radical prostatectomy, or radiotherapy.” There were about 550 men in each arm of the study and at the end of 10 years, there was no difference in the death rates from prostate cancer. 291/545 of the men in the surveillance arm had gone on to receive treatment within 10 years. However, as D’Amico points out, “the occurrence of metastasis, defined as the spread of PC to bone, viscera, or lymph nodes or a PSA level > 100 ng/mL, occurred in 62 men and was more than two-fold higher in men randomly assigned to [active surveillance] versus a treatment protocol.” In absolute terms, this meant that 32/545 surveillance vs 13/553 surgically treated vs 16/545 radiotherapy patients developed metastases and would need to suffer the side effects of hormonal treatment during their last decade or so of life. D’Amico argues that these men with metastases should be a better measure of the outcome for the active surveillance approach. What he does not deal with, however, is the benefit the men without metastases experienced by taking the approach. By 10 years, nearly half of the surveillance group had not had the side effects of definitive treatment, and even those who “fell off the wagon” and were treated enjoyed some additional time without side effects.
In a companion article to the ProtecT cancer outcomes article, we learn more about the side effects of treatment. These graphics from that article show that surgery (red line) and radiation therapy (gold line) produce significantly more side effects than the slower problems that develop over time with both urinary and sexual function in the surveillance (and all aging men) group (blue line). The PIVOT trial (also worth reading to gain perspective on the relative advantages of treatment or not) demonstrated that virtually all patients who receive treatment experience some decrement in sexual function.
Not shown, but an important part of the overall picture, is that the surveillance protocols involve biopsies every 1-2 years, or MRI exams (or increasingly both), following the PSA values which can and does produce anxiety (see my blog on the “PSA Clock”), and the psychologic burden of “knowing you have cancer”. These side effects of surveillance are often under-appreciated, and some men who elect for surveillance eventually change their mind and opt for treatment because of them.
Finally, age makes a big difference in psychology. Older men are generally less sexually active and focused than younger. There is good evidence that it is just as safe to do active surveillance in younger men, if sexual function is an overriding consideration. In the end, the decisions about what to do if you have been diagnosed with a low grade prostate cancer are not easy, and highly personal – just like sky-diving and bungee jumping!
prost8blog 
Michael, you don’t tell men what to do based on one-size-fits-all averages and insurance company preferences. Instead you give men the insight they need to decide what is best for them individually. Thank you!!
Even though this is not exactly what I would personally prefer to hear, what you have to say is always accurate and especially insightful. Your blog is of great value to me. Thank you.
I always enjoy your posts and am pleased you are posting into retirement.
You are at a point in your life/ career you have done/ seen/ heard it all and are more sanguine about how men should deal with their PC and that is reflected in your posts.
I think it is fair to say you have seen the consequences of overtreatment and the psychological consequences of appropriate treatment and encourage men to explore how they are going to psychologically react to where they might find themselves on the spectrum of treatment.
I tell my wife that PC , in many, many cases, inflicts more lifetime mental pain on men than what they experience physically. For PC men with intermediate or high risk disease up to the age of 65 and who have ( absent PC ) a 20 year life span, I support the ” kitchen sink” approach with progressive treatment.
After age 65 decisions are more nuanced and therefore more perplexing and difficult, particularly for those with intermediate grade or high risk disease, that is capsule contained . Those men should avoid surgery and do radiation or a focal therapy.
Once that is done, absent a PSA doubling time of less than one year I would do nothing.
Once that occurs I would recommend an anti androgen momotherapy to see how much control is obtained,
before starting an agonist. If an agonist is recomended, I would try bi polar androgen therapy until failure. If that failed, I would not do anything further if my non PCA life expectancy was less than 10 years.
I say all of this Dr. Glode for your reaction.
Excellent analysis and very worthy approaches to consider
Michael, Your last sentence says it all: It’s highly personnel. In my 3 years living with this thing, and communicating with others fighting the disease, I’ve found some suffer from the side effects of treatment, some are scared of treatment, and myself with side effects (from RP, RT and ADT) that were easily handled. You can present the facts but you can also explain that the number of side effects, severity of side effects, a man’s ability to deal with side effects, and the impact of these side effects on quality of life, are all different for each man.
Michael,
I feel there is a major issue between important medical specialties in the prostate cancer community – Urologists, Radiologists, Immunologists, and Oncologists. In my case, getting a joint assessment of my prostrate cancer is proving to be impossible. My Radiologist seems to back only Pi Rad findings, while my Urologist will only accept Prostate Biopsy findings and the Gleason Scoring. My Immunologist and Oncologist are not even in the picture.
I have refused any additional invasive procedures until some agreement can be decided regarding how active surveillance can benefit from using multiple diagnostic techniques of these specialties. I have done this so that my specialists begins a discussion with each other, which seems to be a major issue between these specialties of “who’s in charge”. Without a cooperative environment, I feel my concerns, as the patient, and the person ultimately in charge of my health, are being overlooked.
Are there other men who feel their health concerns are not being met by an integrative diagnostic approach with different specialties or is my case an anomaly in the medical community?
I needed to be my own coordinator, talking to doctors from different specialties and trying to make sense of it all. It did not always work. Working out whom to trust is difficult. We need to take careful notes, and re-read them as more information comes in. I chose a famous surgeon who rushed the operation, left positive margins, and ridiculed radiation treatment. I found an excellent radiation doctor who cleaned up the mess and my PSA has been <0.02 for 11 years. Good luck!
Excellent summary. I like that you consider the whole patient (and the spouse). I wish all doctors treating this disease were so forthright when counseling patients (most are NOT).
I immediately forwarded to a couple who are newly in Active Surveillance.
Nice post.