Active Surveillance (AS) Fundamentals

Active Surveillance for favorable-risk cases of prostate cancer is not an immediately obvious choice. Most men hearing the words "You have cancer" think immediately of surgery, or radiation therapy, or chemotherapy. That's mostly because they don't know much about the very unique nature of prostate cancer.

Prostate cancer is one of the most common, least lethal types of cancer which has yielded a very large population of "survivors." (A survivor is defined by the American Cancer Society as anyone living who has once been diagnosed with "cancer.")

Another dimension of PC which is not well understood at initial diagnosis is that "prostate cancer" is an umbrella term covering a broad range of conditions ranging for totally innocuous to serious life-threatening. Encompassing such a wide spectrum, treatment must be selected judiciously and personalized according to the unique case characteristics. Bad treatment decisions negatively affect sexual and urinary function for a lifetime. Due to unfamiliarity with the prostate cancer world, patients struggle to understand their quality-of-life priorities, never before having been confronted with high-stakes decisions affecting their sexual and urinary function. And all of this occurring under the looming pressure of a recent cancer diagnosis. Good decisions result from getting good information...

The good men and women here at HW/PC have put together this list of Active Surveillance Fundamentals to help site newcomers (particularly newly diagnosed favorable-risk cases) quickly learn about this important information. This list was a collaborative effort, and many site members contributed—including some members who themselves are on AS. Here's the list that was originally published just over a year ago, which is worth re-publishing periodically (or added to the existing "sticky" note for "Newly diagnosed..."):

ACTIVE SURVEILLANCE FUNDAMENTAL #1: AS is only for well-selected men diagnosed with PC. This is why “Step #1” for newly diagnosed men is to understand your risk category (see “Newly diagnosed…” thread). AS is not for men with high risk cases. Intermediate risk…maybe. This category has been split into two groups: 4+3 unfavorable intermediate risk cases, and 3+4 favorable intermediate risk cases, with other case characteristics also weighing-in. A number of AS programs have been including favorable intermediate risk cases. Low risk cases are the obvious candidates, and Johns Hopkins has had strict guidelines (although they have relaxed their AS criteria a couple years ago).

AS FUNDAMENTAL #2: Despite the limitation of being "well-selected" in #1, above, a huge percentage of newly diagnosed men are suitable for Active Surveillance as a first-line management strategy. Some AS programs are more restrictive than others, and there is currently no universally accepted formal protocol for AS entry, monitoring, or exit. Clinicians individually tailor a program of care to each individual case but based on common foundations. Using contemporary data of newly diagnosed cases in the US, somewhere between 40% and 67% of new PC cases are likely eligible for Active Surveillance, based on more and less restrictive program criteria.

AS FUNDAMENTAL #3: Some men who originally qualify for AS end up moving onward at a later date to a deferred treatment if signs indicate degradation in case characteristics. These men with deferred treatment are also “AS success stories!” (Please study and understand this PC Infolink article if you are confused by that statement: prostatecancerinfolink.net/2010/10/19/understanding-your-clinicians-mindset-about-active-surveillance/) The program worked for them, too, by showing them if and when treatment was appropriate. Complementary research has demonstrated that men on AS who move to deferred treatments have essentially the same outcome as those who sought immediate treatment.

AS FUNDAMENTAL #4: Ongoing monitoring is important to the continued success of AS programs and men enrolled in AS programs. Annual PSA blood tests are the norm. In the past, on-going AS cases have follow-up biopsies (after the 2nd, confirmatory biopsy) on an every 18-24 month basis (typically), depending on the program. In the current decade, mp-MRIs have been found to be superior to the old standard ultrasonic-guided needle biopsy, and most AS programs now at least intersperse mp-MRIs with needle biopsies.

These were originally posted in the thread titled "Active Surveillance Update - 99.9 Percent Will not Die from Prostate Cancer" which can be found here:
www.healingwell.com/community/default.aspx?f=35&m=3487697

On behalf of all those who contributed, I hope that this is helpful today and in the future for new site visitors...

JackH said...


Prostate cancer is one of the most common, least lethal types of cancer which has yielded a very large population of "survivors." (A survivor is defined by the American Cancer Society as anyone living who has once been diagnosed with "cancer.")

Prostate cancer is one of the most common cancers but saying it is the least lethal cancer is implying that very few people die of prostate cancer. That is not right, in the US 27,000 people died last year of prostate cancer. The CDC describes it as a "leading cause of death amongst men of all races".

As we know of course, AS is a perfectly valid treatment choice for those who have the right risk profile. Men who have been diagnosed with small amounts of Gleason 6 cancer need to be walked past their immediate impulse to get their prostate out to a more broad set of options and be strongly recommended to consider AS. The AS option is without side effects but needs acceptance of the "active" part of "active surveillance" - this requires a patient who has discipline and the mindset to cope with the management of risk.

Jack, I understand your efforts to educate people about the benefits of AS. But I don't think we should ignore the fact that prostate cancer is a deadly cancer and even in the low risk cohort, AS will not suit some people.

I wonder what percentage of PC folks who regularly read/post over time here on HW are ultimately dx. with G6 or a G3+4 in say 1 or 2 cores?? I will guess quite small (under 10%.?)

I would think VERY few.

Anyway, I just started a new post survey on that

Mel

Post Edited (compiler) : 12/21/2016 8:42:57 AM (GMT-7)

I completed your poll, compiled, but what's more meaningful/interesting to me is the distribution of men in large sample populations in the US, not the subset of men who have been on HW >4 months. Irregardlessly, I responded.

Hope, What you say is all true, but there are published studies showing that men who have met the criteria for a strict AS program like Johns Hopkins have not had any increased mortality risk if they later needed/decided to be treated. So, there is no fear factor to deter a man who meets those criteria from choosing AS, if he is so inclined.

The point I am making is that decision making is not purely data driven. The argument you make about this being a non lethal cancer with a large cohort of survivors does not work all that well when many people who have just been diagnosed with the disease know someone who has had a painful prostate cancer death. This disease kills a lot of people.

If the argument for AS was easy then low Gleason patients would be flocking to it once they were told of it. After all it does allow them by and large the life they had prediagnosis. I understand the argument that AS does not get the airtime it deserves, but even patients that understand it (including the fundamentals that you detail above) often don't choose it. Some patients weigh their ability to follow a plan, their mindset including their emotional makeup, their age, their ability to understand risk and STILL don't think this is the right option for them. This is still a valid way of thinking.

I applaud your efforts to get the message out about AS. AS is a a great option for many but if your target audience is the newly diagnosed then the strident focus on AS with the undertone of dismissal for other options and ways of thinking may actually be off putting.

Hello everyone ...

I just joined - just became a member of this site. The forums are highly interesting, and as such I would like to share my story and perhaps get some feedback of any kind from as many members as I can.

I will warn you though, that my story if quite complicated (medically) and I dare say significantly different than most other PC posts here. It does involve prostate cancer, but there is an important precursor to it. Here it is:

In 2015 I came down with lymphoma (Large B-cell) cancer. I saw affected lymph node which had the tumor with my oncologist on the scans. It was the size of a tennis ball! Coincidentally, it was also in the rectum and just next to the prostate. I also had two tiny pea-sized infected lymph nodes in the groin area.

I was then put on chemo.

After many scans of all types and tests, the chemo came to an end, and all the tumors were gone. I had a biopsy and was declared officially "cancer-free".

However - and here it comes - while viewing my last scan of success, my oncologist suggested I get the rectum radiated (where the tumor was) AND he also pointed out my prostate, which he said looked like "something weird" inside it. He then referred me to a urologist right there at the medical facility.

Fine. I went and had the prostate biopsy done. One week later I came in for the results, and sure enough it was positive for PC - Gleason 6 - very small (just a few samples of 5 cores or something like that).

The urologist (a woman) sat me down and began to explain things to me - some of which I truly believe were blatant lies (more on that later). She explained that "something this tiny could possibly go through Active Surveillance". However, because of the location of the cancerous lymph node (just next to the prostate) AND because I needed to have that area radiated I had better have my PC treated along with it (IMRT), stating that if this cancer ever became aggressive (a lie, as it was a tiny G6) OR if another more aggressive prostate cancer flourished (about 30% of G6 cancers have a higher risk cancer growing right behind it) I could not treat because it would severely burn and damage the rectum area. I would not have been able to do radiation, pellets, surgery, or anything else, except ADT (which I am totally against and will never do). Furthermore, I only had two (yes - 2) weeks to decide...!

I began to do internet research on PC and treatments and more, I became confused and became more and more fearful the more I read. I would lose sleep at night waking up in a panicked state of mind. What should I do, I would ask myself. Finally one morning I woke up and just made up my mind to go through it. After all, just how bad could it get, right? I had nothing to compare it too, and she said that I would "just probably need a little more Viagra" to offset the side effects (of the treatment).

To sum up a very long story into a few sentences... I have become progressively more depressed and sad and - nearly five years out - I still have this anguish and regret in my mind and no matter what I do (I'm in therapy for the third time) IT DOES NOT LIFT; I have a bad feeling this will be with me for the entire rest of my now-saddened life. I do not want to get sexually explicit in this site, but in my mid-fifties still had unsurpassed sexual energy. But enough of that.

That is my story (in a nutshell). I apologize for writing a dissertation, but there is no way to shorten this.

My ask is - can anyone please chime in on this? Any thoughts? Did I do the "right thing"?

I look forward to hearing from other members.

Al, I started a new thread called "Welcome New Member" in the hopes you will get some responses. I'm locking this old thread for now.

Post Edited By Moderator (Tudpock18) : 3/8/2020 3:27:52 PM (GMT-6)