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Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
The answer I come up with is once again related to not being able to provide younger men with low risk numbers enough information to make a comprehensive decision on their prognosis. So, now it is apparent to me that their is more support mounting for even men under 60 to maybe consider this route. But, everything I have read to support that new mindset does not provide the additional diagnostic tests needed to reaassure these patients that the risk is quantifably known vs. the current biospy sampling result alone. Guess it is no surprise that most of them choose treatment out of worse case fear rather than having good solid medical testing results to guide them! Once agian it seems like it the medical community does not really care to give these younger patients the whole story on the gland vs. just a sampling to make a life altering decision, not good!
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
In a simplier related analogy, it is like asking a medical examiner to determine the cause of death on a body without being able to run all the required tests.....that does not make good sense to me, thanks!
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Tom,
I understand your frustration because I had a similar anger/annoyance when I was diagnosed at age 54 and could not find any data to demonstrate why I had to have immediate treatment - and what the consequences were for not doing so.
There is however a simple answer to your question
Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Because there is no data supporting AS for men younger than 65 (and very little for men over 65.)and doctors, being scientists need data to make decisions.
You have to bear in mind that for most men the progress of the disease is very slow - it is an indolent disease in MOST cases, taking 20 or 30 years to reach it's conclusion - the death of the man from the disease itself (in the minority of cases) or the death of the man from other causes - ironically referred to as some old-timers as the only true cure for PCa. We know that from broad studies and from observations of populations of men.
At the present time the only tests available are such that they cannot predict with a 100 per cent accuracy what the ultimate outcome will be 20 or 30 years down the track. I doubt that there will ever be such a test because of the nature of the disease and the nature of mankind. There are many forms of the disease - one study last year claimed to have identified 24 (see The Prostate Cancer Quandry - and the individual physiology of an individual man to the disease means that their response is a very wide one - and unpredictable.
But even if we use the currently available tests and data to follow young men to see if AS is indeed a safe option, it will be 20 or 30 years before there is any good data. So, why hasn't this been done before now? Because until the implementation of PSA testing, very few young men were diagnosed with PCa and those that were diagnosed were hastened into treatment because of the belief that all young men had more aggressive forms of the disease, a belief that conntinues to this day in some circles.
So essentially there were no young men choosing AS to form a study group. But....times are changing and in fact changed some time back when formal AS studies were started. One has been running for almost 10 years now and others are not far behind. The data being collected will shine a bit more light on this complex issue but it all takes time and in the absence of data we all have to make the decision we feel suits us best. Not easy.
I don't know if you read my story Terry Herbert or the link from that story to another piece I wrote about how and why I made my decision which is at WHY I DID NOT CHOOSE SURGERY I am not suggesting for a minute that my decision would be the right one for you. I am only suggesting that reading my decision-making process might help you in making your own personal decision.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Hi Terry,
Once again you provide alot of good explanations to my concerns & questions, thanks for being there for us confused PC guys. Yes, I did read your story & like you point out, each one of us has to decide what uncertainity level were ok with given the diagnosis we have today. I am going to stay to AS for at least the 1st & 2nd rounds of PSA checks coming up in February & May, as well as most likely have another biospy. Although, I would rather have some other test done to assess my whole gland if it can be done with 90% plus accuracy, as the biospy is lacking as discussed previously!
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Tom,
Although there is no one test to determine indolant from agressive PC there are a number of tests and when taken as a whole provide much more information on which to base a decision.
1. Color Doppler Ultrasound can determine the size and location of the tumor and by blood flow may determine it's agressiveness.
2. MRIS or other MRIs with diffusion technology or dyes can also identify if a tumor is major or minor.
3. A saturation biopsy can determine size ang grade as it gives many more samples to evaluate.
4. monitoring psa and psa kenitics over time as psa reflects tumor growth in most cases.
5. PCA3 may indicate agressivess of the cancer.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Hi Tom
I am 61 now and I had surgery 18 months ago. My PSA moved between 9 and 6.5 months before surgery. My last prior to surgery was 6.5. Before these high PSA's my last PSA was 4, 4 years prior and my local urologist felt everything was fine. To make a long story short my PSA now is rising after the surgery. I now feel I had cancer 4 years prior to surgery and if I would have had it earlier the cancer would have been confined. Now I have to deal with secondary treatment. I am envious of men who had the surgery early and have undetectable PSA. By the way my urologist recommended watchful waiting when my PSA dropped to 6.5. He is no longer my urologist.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Wow Bruce, your post is disturbing. I am 55 & have been on AS for four years. I have had DREs, PSAs (& all the PSA related markers: % Free, Density & Velocity), four TRUS biopsies, PCa3 & ProstaVysion tests. I am now looking into CDU & possibly MRIS to get additional insight into my cancer's aggressiveness.
The results of all these tests & markers have been good (or good enough as was the case with the ProstaVysion results) and it is for this reason that I continue on AS despite my last biopsy a year ago revealing that I had 4 out of 12 cores that were all 45% cancerous. My Urologist agrees with my decision to stay on AS, but when I read scenarios like yours it shakes my confidence in my decision.
I sometimes ask myself why I wait. My sex life, which was once great, has diminished significantly now that my multi-orgasmic wife is pre-menopausal, and I have less fear of long-term incontinence problems since I have largely kicked my only vice, i.e. too much diet soda. I also have one of the best surgeons in the country lined up in Dr. John Libertino of Lahey Clinic when I decide it is time. Four years ago, I said that I would take five good surgery-free years over fifteen years following RP, but I have to say that if I found out now that I missed my window of opportunity to be rid of this disease, I would be full of regret. Still, I wait, hoping for more tests to come along that will also produce good results and re-inforce my belief that I am doing the right thing. The bottom line is that, for whatever reason, I just have not been able to pull the trigger on treatment.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
I know the numbers are important I just wish they gave you a definitive diagnosis. My biopsy consisted of 10 cores being taken.
Left side apex -negative,
left side mid - Gleason 3+3=6/10 20%,
left side base - negative,
right side apex - Gleason 3+3=6 60%,
right side mid - Gleason 3+3=6 5%
right side base - Gleason 3+3=6
Surgical pathology Gleason 3+4=7/10 Staging T3a NO Mx
I could live very happily with my post surgery condition. I have no incontinence and some ED but it is getting better. Again I feel if I had the surgery earlier my chances of having a rising PSA would have been less. The ED would have been better also because the surgeon would not have had to get at the cancer in the fatty tissue around the nerve. I know it is a difficult decision to make. I just would not let the desire to do nothing cloud your judgement. I was believing my first urologist because he was telling me what I wanted to hear. Believe me I am looking for a reason not to have secondary radiation treatment even though I know I should. Hope this are the numbers Terry wanted and I hope this helps you.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Thank you for that data Bruce. It all helps to understand where you were and where you are now.
But you didn't respond to the question as to when the biopsy was done.
Am I right in saying that you had an elevated PSA but were told that you should just keep a watch on things; that you did this for four years and then, as a result of a signifcant change in PSA you chose to have a biopsy?
Or did you have the biopsy and then take the AS route until you had a signifcant change in PSA?
What were your PSA results over the four years? Did you have regular DREs and what were the results there?
The detail is important - there is always variance in very similar diagnoses, but your diagnosis is a long way from Tom F's.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Hi Terry
I had the biopsy 2 months before surgery. The 4 years that lapsed between a PSA of 4 and PSA of 9 were absent of any PSA test. I was very naive about prostate cancer and PSA test. Being extremely healthy I went that long without a physical. Also my local urologist acted like everything was great when it was 4. He never mentioned following up with PSA test every 6 months etc. I wish I had the knowledge I have now. Hope that clears things up. Bruce
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Thank you Bruce. That does clear things up.
I think people may have got the impression that you had taken the AS path for four years and then found that your disease had become more aggressive. That is not the case because you were not actively checking on your prostate health - through no fault of your own, I hasten to add but because of poor medical advice.
That puts you in a very different position from men who are followinf an Active Surveillance path - Alan for example, or from the way Tom F is thinking about proceeding.
I wish you all the best for your future journey along the PCa road.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Bruce's story re-inforces just how important it is to get a second opinion when dealing with PCa.
According to the American Cancer Society, a PSA level between 4 and 10 has a 25% chance of being prostate cancer and his Urologist never made him aware of that. Nor did he educate him on the importance of getting his PSA checked every 4-6 months and look at the price he paid.
The Urologist that first diagnosed my T1c PCa gave me a Lupron shot minutes after I got the news, telling me only that it would give me time to make a decision. Whether it was done out of ignorance or greed, I don't know. What I do know is that I learned not to accept what a doctor says without question just because he has a medical degree. It makes you wonder whether or not some of these doctors got their diploma out of a Cracker Jack box. (Keep in mind that somebody has to finish in the bottom third of their class).
Due to various factors like HMO coverages & travel distances a person cannot always go to one of the top cancer centers available, but he can certainly get a second opinion. In fact, the best Urologists (like Dr. Patrick Walsh of John Hopkins) recommend that you do, even if you have been fortunate enough to visit one of the better treatment facilities & doctors out there.
Lastly, thank you Terry for digging deeper into Bruce's story to bring out the important facts of his case. I truly feel for him, but I also feel better knowing that his scenario is very different from my own.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
A friend asked me if there is a local urologist to avoid. I sure had an answer for him and I stated that "I now know more about the meaning of PSA test then the doctor". I feel good that I at least got a second opinion and did not base everything on a doctor that was telling me what I wanted to hear. This web site and John's Hopkins library have been excellent educational tools.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Alan you say:
According to the American Cancer Society, a PSA level between 4 and 10 has a 25% chance of being prostate cancer ....
Some studies show that the percentage of men with a positive biopsy might be as high as 35% with a PSA over 4.0 ng/ml - but that would include men with a PSA of over 10.0 ng/ml. Either way, there are more men who will NOT be diagnosed with PCa after an elevated PSA than those who will.
That is one of the problems with PSA testing - the other being that about 15% of men with a PSA BELOW 4.0 ng/ml will be diagnosed with PCa - that is because the PSA test is NOT prostate cancer specific, something apprently not known by many in the PCa world.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Hi Terry,
I am a little confused by your last post. When you said..."that is because the PSA test is NOT prostate cancer specific, something apparently not known by many in the PCa world", who are the "many" that you refer to?
The fact that PSA is not PCa specific should be obvious to anyone looking at the data. After all, if 25% of men with a PSA between 4 & 10 have PCa, then it should go without saying that 75% of them have an elevated PSA caused by factors other than cancer.
What is the doctor’s responsibility as far as PSA is concerned? The U.S. Preventive Services Task Force (& similar organizations around the world) have come out against automatically testing for PSA. Instead it is recommended that the doctor help his patient make an informed choice regarding the test by “discussing the potential but uncertain benefits and the known harms of prostate cancer screening and treatment”.
So, as more & more doctors follow these recommendations, many men opting to forego the test (like my brother) will not know what their PSA is and the doctor’s responsibility ends with making sure his patient has made an informed choice.
However, if the patient chooses the PSA test, any responsible doctor would inform the patient of the likelihood of cancer based upon his score, and make the patient aware of the importance of PSA screening every 4-6 months.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Alan,
The "many" I referred to when I said "......that is because the PSA test is NOT prostate cancer specific, something apparently not known by many in the PCa world....." are what at times seem like the majority of doctors, urologists and men. I see hundreds of stories each year - and have for the past fifteen years - and time and again men are rushed into early biopsy and early treatment on the basis of a PSA number (and often a single such number) that is marginally elevated.
For every man who has a positive outcome there are hundreds of thousands of men who have negative biopsy outcomes. Very few of these men post their experiences, because they are not diagnosed with prostate cancer, but they have undergone an unneccesary procedure, which is not without risk. And when they have their next PSA test and the number is still elevated, the chaces are that they will be offered another biopsy.
Some men will go on to have multiple biopsy procedures, based on their PSA levels until fnally there is a speck of material which can be labelled as 'adenacarcinoma'. And they can then worry about which of the many therapies on offer they need to treat this 'cancer'.
There seem to be very few doctors who will investigate potential causes of PSA elevation before ordering a biopsy; who will run a series of PSA tests to see what the results are.
I don't know if you have come across Dr Catalona in your Internet searches? He is highly regarded within the prostate cancer industry and is commonly regarded as the 'father' of PSA testing. It is said his Foundation benefits from the enormous royalties generated from the test. The FAQ page on his site is at Urological Research Foundation Here are some relevant quotes from that page:
The PSA blood test is probably the single most accurate test we have for the detection of prostate cancer.
When used properly, the PSA test can detect prostate cancer in a curable stage in the great majority of patients.
If the PSA is in the 2.5-4 range, the chances of finding cancer on biopsy are about 25%. If the PSA is 4-10, the chances of finding cancer are 35-40%. If the PSA is higher than 10, the chances of finding cancer are about 60%.
I recommend biopsy for ..... a PSA of more than 2.5.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Hi Bruce,
It seems your point is that if you know your treatment is surgery when the time seems right based on the AS monitoring, may want to consider it sooner than later, to be safe. That is why I am most interested in Color Doppler or something equivalent to get a better overall picture of how much cancer exists in my prostate today, thanks!
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Yes Tom. My mind set is get surgery sooner than later and make sure you have a good experienced surgeon. For an example I had some leakage where the urethra was attached to the bladder. They adjusted the catheter and it stopped. The surgeon said he only put 4 sutures in. They have found to many sutures weaken the bond. I have no incontinence now and I am sure it is do to attention to little details.
Re: Why do Active Surveillance articles favor men 65+ with low risk diagnosis?
Bruce,
Would you care to share more detals of your diagnosis with us - number and percentage of positive cores, Gleason Score etc. I ask because these are all issues that are relevant in a decision making process. Relying on a PSA only can be misleading. Can you also confirm that, as implied by your post, you only had a biopsy after watching your PSA rise and fall for four years?
There are two points that are required to bring the point you are making into focus:
1. You say I now feel I had cancer 4 years prior to surgery... There is a general agreement that most varieties of prostate cancer (other than the aggressive forms) take between 15 and 20 years to develop to a stage when a random biopsy can identify the disease. So every one of us diagnosed with the disease was likely to have had the disease four years before diagnosis.
2. The second point is that there are no guarantees in any aspect of this disease. There are many studies that show that some men who see to exhibit that they are "cured" i.e.
they have surgery within six weeks of their intial diagnosis for what appears to be an early diagnosis,
they have post surgical pathology that shows no indication of spread beyond the capsule,
their PSA is undetectable after surgery
will still have a biochemical failure - a rising PSA up to 25 years after their apprently successful therapy. That is why we all have PSA tests for the rest of our lives after having been diagnosed with prostatee cancer.
