Hear Dr. Peter Carroll, co-director of Urologic Cancer, discuss the active surveillance approach UCSF helped pioneer. Many prostate cancer tumors don't require immediate treatment because they're small, confined and slow growing. "Active surveillance" focuses on closely monitoring patients, identifying early signs of disease progression and treating the cancer before spreading outside the prostate.
Hello and welcome back to another edition of Patient Power. I'm Andrew Schorr, and our programs are sponsored with UCSF Medical Center and connect you with leading UCSF experts.
Today, we're going to talk about something that I worry about as a middle-aged man, almost 58 years old, is prostate cancer. Now as best I know, I don't have it, but I understand that there could be a physical I'll have one day or some signs, and we're watching my PSA, and there could be a concern about it. I also know that you could be dealing with prostate cancer at such a low level, if you will, that it may not be something you ever need treatment for. You could die with it rather than from it.
We're going to get a lot of information, particularly about a fairly new concept called "active surveillance." Our expert is chair of the UCSF Department of Urology and co-director of Urologic Cancer, Dr. Peter Carroll. Dr. Carroll, thank you so much for being with us.
Andrew, thank you for having me.
Dr. Carroll, I understand that many men will in fact be found to have prostate cancer but that it's not always something that needs to be treated. Help us understand how you know who's who.
What I tell patients and physicians is that prostate cancer is really a spectrum of disease, and you have to look at it in that way. Not all patients have the same types of tumors, the same grade, extent of disease, so I think it's very important for patients and their families to recognize you want to get a lot of information about the type of prostate cancer you have before considering treatment.
All right let's take that further. How do you get that information? Obviously one question would be if there is prostate cancer has it spread? That's a more serious situation, but short of that then how do you analyze where you are?
The first thing I tell patients and their families is don't rush to a decision. Very few men need immediate treatment and yet many men make a decision about treatment within minutes of hearing their diagnosis. So the first thing I tell men and their families is to slow down, don't rush, get information.
Information can come from a variety of sources. It comes from the Internet, books, obviously their physicians. I think frequently patients and their families will want to consult with more than one physician and may want to consult with physicians who may have a special expertise in this area, and not only that they may want to talk to a urologist, radiation oncologist, medical oncologist, nutritionist. There's a lot of information out there if people just take the time to avail themselves of it.
Now let's talk about why there isn't a rush. You know, somebody gets a diagnosis of cancer. Cancer is such a scary word, and there are many different cancers, many different subtypes, pancreatic cancer or brain cancer is different from prostate cancer. Is prostate cancer typically slow growing?
Well, it's typically slow growing, and I think you brought up a very important paradigm there. Many men or women who get diagnosed with cancer think that all cancers are the same, and prostate cancer is exceedingly different than lung, breast, or pancreatic cancer.
In the United States because of all the PSA testing and physical examinations that are being done, heightened awareness over the last decade and a half, we've seen something called stage migrations. Men who are diagnosed with prostate cancer today generally have much smaller lower grades, more slowly growing tumors today than we saw 15 or 20 years ago, so it's very rare today that we see men present with very advanced or metastatic prostate cancer or cancers that spread to the bone or lymph nodes.
Two decades ago about one-third of men presented with such disease, but now it's only about 1 to 2 percent. Because of all the testing that we're doing and the number of biopsies that are being done, the typical patient has a cancer which is totally asymptomatic, not causing them symptoms, associated with a low PSA, low volume, and confined to the prostate.
Now, after having said that, not all patients present with those types of cancers. There are some men who present with higher grade, more advanced cancers who might require more immediate treatment, but that's the exception rather than the rule.
So for the majority of men, we think there's prostate cancer going on, and we're watching your PSA. So it used to be this concept of "watch and worry" and you know you were told you have a cancer diagnosis but there's a reason for not starting treatment right away. Where does this concept of active surveillance come in that is different?
The concept of active surveillance came from a concept called "watchful waiting" and I always say watchful waiting was not enough watching and too much waiting, but there was a time when some men were not treated and followed not very carefully and only treated when they developed metastatic disease, disease in the bone usually, and then they were treated with hormonal therapy because prostate cancer is generally a hormonally sensitive cancer.
The concept of active surveillance has really grown from that because nowadays men present with much earlier stages of disease. We know the extent of that disease much better today, so there's very little under-staging. Two decades ago, half the men who went to surgery for prostate cancer were found to have much more advanced disease than they were expected to have. That happens less frequently today. So the thought now is because we're identifying some men who have very small cancers, we're identifying it very early in the course of disease and rather than doing immediate treatment we will follow them very carefully with blood tests, physical examinations, imaging, and repeat biopsy, and we'll treat them not when they develop advanced disease but treat them when they develop any evidence of what I call a subclinical local cancer greater progression and then treat them.
It's been our experience when we treat those men that in fact their outcomes appear to be just as good as if we treated them right away. Now the caution here of course is you really want to do your homework and be sure that your cancer is being diagnosed when you've had a very good biopsy, an extended pattern biopsy, you know the grade very well, and the PSAs are generally stable. So you can characterize a group of patients who may be very good candidates for active surveillance versus those who might benefit from more immediate treatment.
You have a center where you've really thought about this a lot. For your patients who are having active surveillance, how frequently would they see you, and what sort of checkups would they have?
First, let me state who are the best candidates for active surveillance. The best candidates for active surveillance are those men with low-grade prostate cancer, what we call no-pattern four or five score to their biopsy. They have cancers which either can't be felt or seen or those that can be felt or seen but confined totally to the prostate, what we call T1 or T2a disease, less than 1/3 of the biopsy is positive, and most of these men have had 12 or more biopsies done, so less than 1/3 of the biopsy is positive and less than 50 percent of any single core involved. That tends to define a group of people with very limited disease who are good candidates for active surveillance.
I emphasize the diagnosis has to be made as a product of a very good biopsy. So sometimes if we're not quite sure that the biopsy technique was adequate we'll go ahead and repeat the biopsy just to be sure we're not what I call "under-grading" or under-staging that patient.
Now, active surveillance is being done at many centers, not as many that it perhaps should be, but centers here in the United States and in Canada and in Europe. No one knows the best way to follow patients, but here at UCSF we get PSA tests and blood tests done every three to four months, serial imaging with a Doppler ultrasound actually is a pretty good test so we do that at six-month intervals, and we usually repeat the first biopsy at 12-24 months. Then depending upon how long the patient has been on surveillance, we extend the time interval between evaluations, so it's really a product of blood testing, physical examination, imaging, and every now and then a repeat biopsy.
And that could go on for years.
It could. Certainly patients who are older or who have other medical diseases may be very good candidates for active surveillance, but even some very young men we're seeing with small, low-grade tumors we've put on active surveillance. For those men it's not so much are they going to be treated or not treated because if you're in your 40s and 50s and have a low-grade cancer well I think you're going to live a long time, and even a slow-growing tumor may get to the point that it will need treatment, but a lot of these young men may not have completed their families; there are side effects of treatment, and would like to put off treatment if they can to complete some important life events.
Yes that was my question. If someone might say, well if I'm going to need treatment some time what's the downside of having it now? Let's just go for it. Help us understand. I know there's no sort of free lunch with the treatments that you have. There are side effects. There are concerns.
Any treatment no matter how well delivered can be associated with some side effects, and we try and limit those side effects, but they may be present. So the thought of course is that if we can delay treatment without compromising overall outcome, let's go ahead and do it and again this is especially for patients who might older or have other medical illnesses.
We do realize that there are some men, even though they have very little risk of progression, who just do not deal well with active surveillance. For those men, their mental health improves with treatment, and we recognize that and do understand that all men may not be or feel very well suited to active surveillance.
I think the more information that comes out on active surveillance the more that physicians with expertise in this area expand their programs and patients we have found actually adapt well to it. So you can minimize the anxiety associated with surveillance by putting a little bit more time and effort into educating the patient and their families. A lot of the patients' families are the most aggressive ones in advising treatment compared to patients themselves.
So this concept of active surveillance is a treatment option in a way. It's part of the treatment plan.
Correct. I tell patients active surveillance is not so much about whether you treat or you don't treat. It's about the timing of treatment. Does every man need to be treated right now versus actually following them for awhile. Some men may not need any treatment, but for those that do need treatment it does not look as best we can tell that they compromise their ability to be effectively treated.
Now, there's always some risk with active surveillance. We think that risk is quite small, but if a patient is not willing to take on any risk that the tumor could grow in that interval, then perhaps they should consider immediate treatment.
But this concept of active surveillance you arrived at by doing studies.
Help us understand the research you did to get to this point.
First, remember that a lot of people got into the concept of watchful waiting or surveillance even before we did, but we're a high-volume center, and we began noticing that many men were presenting with very low-risk disease, low PSAs, low Gleason scores or grades, and limited volume. For those patients, we were concerned that we were exposing them to the possibility of side effects with perhaps not the benefits with regard to quality of life or quantity of life.
For the man who is at risk, we're very aggressive about treatment. We have very large programs in surgery, radiation, hormonal therapy, dietary therapy, and clinical trials. But we're seeing an increasing number of men, frequently older with very small volume tumors, and we recognize that in this country if you're detected with cancer you're mostly immediately treated.
Detection and treatment are tightly linked in this country, and we think it's time to unlink them. We believe in early detection strategies, but then we want to say let's go ahead and do a careful risk assessment and consider treating selectively based on that risk. Low-risk patients may be cancer surveillance candidates. Intermediate and high-risk patients should be treated, and they should be treated with those types of treatments most likely to cure them and limit side effects of treatment.
It makes sense to me. Now I understand that's at the beginning of a treatment plan. So now someone is in active surveillance. What are the things, what are the changes you look for that then say okay now it's time to move on to treatment whether it's radiation therapy or hormonal therapy or surgery? What are the things that say OK now these are game changing situations?
No one knows what those things are, but I can tell you what most of us are looking at, and that would be abnormal changes in serum PSA, the kind of the blood marker for prostate cancer, a change in tumor volume based on biopsy or imaging, or a change in cancer grade based on biopsy.
At UCSF, we have found there's usually a change in cancer grade, which is the first harbinger that will change treatment plans. When these people are treated, they're being treated with the same type of modality that we treat them originally with. So if they were candidates for surgery and they progress, they're then candidates for surgery. If they were candidates for radiation therapy and they progress, they're candidates for radiation therapy.
We have not seen a single man present with metastatic disease. We've never seen anyone go from clinically localized cancer to develop metastatic disease or disease in the lymph nodes or bone. I tell patients that they could be the first one even though we haven't seen it, so there's always some risk with surveillance, but we think that risk is low, and we're trying to work with our scientists here to develop even more sensitive markers that predict risk of progression even more discretely.
Dr. Carroll, a bit about the PSA because that continues to be confusing for us men. So first of all, is it the number or is it the rate of change that then becomes worrisome, and also what about monitoring the PSA in elderly patients? I know there is new discussion about that too.
First of all, it's become increasingly clear that PSA is a continuous variable that measured over time maybe more predictive than any single PSA value. So if one has an abnormal PSA for age, we want to get that value repeated, and there are some variations on PSA testing, free PSA, and things like that. You want to look at PSA as more of a continuous variable.
What many of us now are moving towards is earlier testing perhaps at age 40 where you get a single PSA test and depending on what that PSA is you can actually predict the risk of developing cancer over one's lifetime. So how you monitor patients may be different based on initial PSA testing. But again, looking at PSA over time rather than any single value appears to be the way to look at PSA testing.
What about in older people? I know there's discussion going on about doing PSAs at all in elderly patients.
You have to be a little careful about that because it turns out that older patients with prostate cancer tend to have worse cancers than younger patients. This is totally different than what we once thought, so you have to be careful that many men who are older who present with prostate cancer maybe have very adverse risk features of their cancer, which would put them at risk.
What we've advised is that we're not going to set an absolute age level to stop PSA testing. I think anyone at any age who has other medical conditions that would suggest that their life would be limited by those conditions in the next five to ten years may not be good candidates for PSA testing.
We think a lot of the controversy will go by the wayside if in fact clinicians in this country and patients stop equating detection with treatment. So if you do a PSA in an older patient and they've been found to have clinically advanced disease consider treating them, but if they're found to have low-volume, low-grade disease consider surveillance.
We think that's a better paradigm than making a clear age limitation on PSA testing because many of these older patients may have cancers that you would want to treat but not all.
So bringing this back full circle since we're having a general discussion, it's important for someone listening to speak with their urologist or their doctor about their specific situation. What we're saying now is this concept of active surveillance may be something that should be part of the discussion.
I think that it should be part of the discussion for almost every patient with prostate cancer. Now you may want to advise men not to consider it for one reason or another, but clearly for men with low-volume, low-grade disease, organ confined, associated with a stable PSA, certainly in older patients or those with other medical conditions clearly should be considered for active surveillance.
And of course this is a discussion that evolves. So if you are in active surveillance this is the ongoing part of the discussion. Do we stay the course, or is there a change that requires us to do something additional?
Correct, and I think that's what patients need to understand that they can change their mind about treatment over time. In fact one in ten men on active surveillance who've shown no progression and doing quite well from our standpoint may decide to have treatment. So we recognize that for some men there is an anxiety associated with active surveillance, and they appear to do better with treatment.
I think where we are now with the treatments available and recognizing that there can be consequences, hopefully beat the cancer. But sometimes there is incontinence or sexual dysfunction and other issues. It's important I think that now you have the scientific basis where someone can be monitored carefully and have some confidence that it could be right for them, but it's a personal decision.
It's a personal decision, and I think it should be a very well-informed decision. So I think this is where I think patients and families need to seek information, understand their disease very well, understand all their options. I have found that patients and their families who put more effort into this part of their diagnosis and treatment are the ones who are most satisfied. I find the least satisfied patients are those who didn't take much time to understand their disease and who rushed to treatment. I think that's what now we're trying to avoid.
Very good information. We've been visiting with Dr. Peter Carroll who is chair of the UCSF Department of Urology. If you would like to get more information about a urologist or more broadly the physicians and services at UCSF, you can call the Physician Referral Service at (888) 689-UCSF (888-689-8273). Dr. Carroll, thank you so much for your time today and your work on helping really set a greater understanding for men and their families on what might be appropriate options for them as they deal with and hopefully are successful in coping with a diagnosis of prostate cancer.
Andrew, thank you very much for having me.
Recorded September 2008
Reviewed by health care specialists at UCSF Medical Center.
This information is for educational purposes only and is not intended to replace the advice of your doctor or health care provider. We encourage you to discuss with your doctor any questions or concerns you may have.
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Fax: (415) 353-7093