Another new participant to the boards - thanks for all of the GREAT information from all of the "regulars".
I was diagnosed with PC in Jan, and am still struggling with next steps. I am on the younger side for PC diagnosis, currently 56. Biopsy was positive in 2 of 12 locations, Gleason 6 (3+3), 20% in one positive sample and <5% in the other. I did the biopsy following a PSA jump from 2.6 to 4.2. Subsequent PSAs (Apr12 and July12) have been 3.8 and 3.5 respectively.
Multiple consults with Urologist (robotic surgeon), Oncologist, Radiologist and my GP have all been very useful, but still unhelpful -- they all concur so far that each treatment option (surgery, radiation, active surviellance-AS) is equally applicable in my case. So, I have choices, which is both good and bad at the same time ... but I think still mostly good
In my extensive reading here and many other places, consensus in recent past seems to be that aggressive Rx is best choice for relatively younger diagnosis -- seek a cure now at early stage for maximum impact to life expectancy. But, I also seem to be finding now an increasing view that AS can and should be a viable choice for positive but low risk biopsy diagnosis.
If AS is truly a viable option, it is obviously an attractive choice. At least my PSA levels are holding steady or slight decrease, which isn't pushing me to do anything in a hurry. But of course my wife and I still worry a lot ....
Next step for me, is consult with Dr. Ian Thompson at Univ Texas Health Science Center in San Antonio in Aug. He seems to be one of the current thought leaders about AS. I want to press with him about how to effectively monitor disease progress, if it will indeed progress, so that we can determine intervention when needed before I lose my window for containment in prostate.
I can report back further about comments from Dr. Thompson next month, if that is useful. Do others will more experience here, have other comments or suggestions now? If you are pursuing AS now, what monitoring steps are you taking, and does it seem to be working out?
I have also seen initial references to a national AS clinical study, acronym is PASS. UTHSC San Antonio is one of the participating sites. If I match their criteria, I would think participating in a clinical study on AS would help keep all the right monitoring steps underway. And, Austin is only 90 mins from SA, so I can get back and forth as needed. Anyone have experience with the PASS program?
The Following User Says Thank You to pkretz For This Useful Post: chuckari12 (09-25-2012)
I certainly recommend you to “explore” avenues with Active Surveillance. It is difficult to live with the idea that the beast is alive inside our bodies but in many cases with similar prognosis as those of yours, the cancer is indolent not bothering the way we live, and one may as well die from other reasons.
Treatments for PCa are known to cause side effects and do not assure cure if the location of cancer is not properly identified. Guessing is part of the therapy.
In any case, trustful diagnoses are important for a decision, particularly if one gives preferences to a “wait and see” approach.
It is recommendable always to get second opinion on the biopsy samples and pathologist report from a reliable laboratory, and one should consult more than one specialist on AS.
NCCN guidelines recommend radical treatment for young patients with intent at cure. But it also adds in its recommendation the concern regulating “Active surveillance VZ immediate treatment”. You can read details typing this in a net search engine; “nccn guidelines for active surveillance”.
You may like to know that newer biomarker assays can detect/distinguish between aggressive and nonaggressive prostate cancer.
You could try to get tested for peace of mind. Type this sentence in a net search engine for details;
“Biomarkers for Use in Differentiating Aggressive from Nonaggressive Prostate Cancer”
In this forum there are many threads on AS. Jim (IADT3since2000) posted a “compendium” on locations handling AS with the name of experts as well as discussions in these links;
http://www.healthboards.com/boards/cancer-prostate/769185-active-surveillance-minimal-if-any-risk-deferring-therapy.html
http://www.healthboards.com/boards/cancer-prostate/699085-active-surveillance-prostate-cancer-age-patient.html
Wishing you luck in your journey.
Baptista
The Following User Says Thank You to Baptista For This Useful Post: pkretz (07-15-2012)
Pkretz, Unfortunately we are in the same boat. I am 52, diagnosed in March, PSA 3.9 Gleason 6, 1 core (24%) out of 12. My thoughts are lets see how this is progressing. If the cancer is slow growing I will ride it out for a few years. If it is more aggressive I will go for treatment. If my psa rises, a DRE turns up something or another biopsy shows more cores I will pull the trigger. I am very curious on what Dr. Thompson says so please post his comments.
The following is a link to the NIH Website. If you type in prostate cancer in the search box you will get three great videos on AS.
I think AS is a great option for you. NCCN hospitals, most of the top cancer centers in America, now include AS as a recommended therapy for all men with low risk PC, regardless of age. Some are even pushing the boundaries to men with Gleason 3+4. One of the misperceptions I often run into is a logical fallacy based on symmetry: It is true that Gleason grade 5 cells progressed from 4s which progressed from 3s. However many men believe that 3s will eventually progress to 4s and 5s. This is most often not true. So there may be no reason to ever seek treatment with all the quality of life issues that come with treatment.
As you know, the critical part of AS is that it's "active" -- there are many steps you have to take in monitoring it. AS programs vary somewhat from institution to institution, but they all include PSA tests every 3 months, DREs every 6 months and repeat biopsies at some point. Some advocate having a second biopsy after a year, just in case something was missed on the first biopsy. Thereafter, biopsies may only be necessary every 4 years.
PSA isn't the only biomarker anymore. The FDA-approved biomarkers now also include % free PSA, PCA3 and -2ProPSA. -2ProPSA is combined with % free PSA to calculate a quantity called the Prostate Health Index (PHI) which seems to be a very good indicator of risk of progression.
Imaging may also be of great benefit too. There are a few doctors who are qualified to use Color Doppler Ultrasound and Shear Wave Elastography Ultrasound that can detect lesions of only a few millimeters. There are some kinds of MRI, like Spectroscopy, diffusion-weighted and dynamic contrast enhanced, and others (collectively called multi-parametric MRIs) that are getting better at cancer detection. MRI-Spect has recently been used to identify Gleason grade as well, without requiring a biopsy. I have a friend who just had a second annual Color Doppler US and saw no growth in his two lesions. That obviated the need for a second biopsy. Needless to say, he is very happy.
Different institutions/doctors follow slightly different AS protocols.With all these tools, you can expect to know with plenty of lead time if the cancer begins to progress. Here's a good discussion of AS by Dr. Klotz, the "Father of Acive Surveillance":
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2935703/
- Allen
The Following User Says Thank You to Tall Allen For This Useful Post: pkretz (07-17-2012)
I see Dr. Thompson on Aug 28th, so that is a ways out, but I'll certainly post what I learn. My choice to schedule that far out BTW, for other reasons.
An aside ... just started reading "Invasion of the Prostate Snatchers" by Ralph Blum and Mark Scholz, which has been recommended in other posts. Interesting reading, so far it is very much pro-AS vs. surgery for appropriate lower risk candidates. It is saying what I want to hear, but as we're all actively learning, take all opinions with a grain of salt.
The following 2 users give hugs of support to: pkretz Baptista (07-18-2012), edd4480 (07-18-2012)
I see Dr. Thompson on Aug 28th, so that is a ways out, but I'll certainly post what I learn. My choice to schedule that far out BTW, for other reasons.
An aside ... just started reading "Invasion of the Prostate Snatchers" by Ralph Blum and Mark Scholz, which has been recommended in other posts. Interesting reading, so far it is very much pro-AS vs. surgery for appropriate lower risk candidates. It is saying what I want to hear, but as we're all actively learning, take all opinions with a grain of salt.
PK
I am also very similar to yourself and Jersey and would be interested to here the results of your conversations with Dr Thompson. Am just starting to read the same book as you. I had just read 100 Q & A's on PCa and I have gone through the NCCN Guidelines for Patients etc on the website.
Take care, good luck and will correspond again .. am thinking AS for myself.
I had appt with Dr. Thompson at UTSA Health Science Ctr last week. It went well, we talked thoroughly about my status and options along with DRE, etc. He was open about all of my options, but is quite supportive of AS as an appropriate option in my case and that's where I'm heading now.
My background for reference -- PSA stats: 3/11, 2.3; 11/11, 4.6; 4/12, 3.6; 7/12, 3.4. Biopsy performed 1/12 (based on sudden PSA doubling) with positive diagnosis -- Gleason 3+3, 2 of 12 sites, with 20% and 4% of those samples respectively. So, I am early stage, but big question is what to do now with relatively younger age of 56.
My biggest concern is side effects and quality of life from aggressive treatment. I have read many books and journal articles over past 6 mos, and aggressively pursued consults with surgeons, radiologists, and oncologist. I am motivated towards AS choice, as long as it is in fact a viable choice now.
Dr. Thompson and I talked at length about odds, survival rates, disease progression, etc. I'll paraphrase what I believe he said. His bottom line, if I can avoid aggressive treatment for a period of time, or forever, and then avoid reasonable risk of deleterious side effects, than this is a useful choice.
His conclusions currently are that likelyhood of low-grade / early stage cell differentiation like I have, turning into aggressive PCa is quite low. This is well supported by long-term studys and outcomes (death rates) from PCa. In fact, there looks to be an emerging school of thought these days across researchers that formation of aggressive cancer in patients like me could in fact be a separate event entirely -- i.e. happens independently ... there is low likelyhood that differentiated cells in Gleason 3+3 or 3+4 patients will evolve further to higher grades of aggressiveness.
If that is the case, AS monitoring is the right choice, as we'll then find aggressive stage if or when it should occur. And low grade stage as I have now will very likely NOT cause any other metastatic issues now or later.
So, how do we implement effective AS? San Antonio center, as well as a number of others across the country are participating now in a long term Canary Foundation study of Active Surveillance. I will enroll with them in this study. I will trust that this will keep track of my status effectively.
I'll "officially" start in the study next spring when I go in for next followup appointment (frequency every 6 mos with Dr. Thompson). I have the written summary from them however, and can describe all of the steps and schedules in separate thread if that is of interest.
Other study points -- there are 730 registered participants in San Antonio alone, and there are 8-10 other sites in US. The principal point of study as I understand it is to find the "right" biological markers that effectively predict aggressive PCa, vs. low level cell differentiation only that will very likely never result in metastatic effects. I think a principal focus now is on urine tests and markers. Dr. Thompson specifically said that they are actively pursuing tests that minimize or eliminate need for biopsy and repeat biopsy -- which sounds GREAT to me
I can advise more about Canary study as I get into it further. Otherwise, with current (July) PSA level back to 3.4, I'm happy now to watch and wait.
Congratulations on your treatment plan. I think that AS sounds like a great plan for you. How great would it be if you can go through your youngish years as well as your older ones without having to suffer the side effects of treatment.
AS programs I have seen all have the same basic elements but differ slightly on the timing. PSAs, DREs, and biopsy are always included. Biopsies vary from annual (Johns Hopkins) to a repeat at about a year followed by another every few years or if indicated. Some will include periodic imaging. Some include biomarkers like PCA3, TMPRSS2:ERG fusion, free PSA and PHI.
One unknown is what is the best trigger to come off AS. Some think Gleason 4+3; some think PSADT<3 yrs; some think it should be based on tumor volume.
I'd be interested in seeing your protocol when you get around to posting it.
Hi Pkretz, thank for your update. My case is very similar to yours. I was offered and suggested AS from my Uro. I saw a surgeon last week, he also mention AS as an option, though he did not endorse it, nor did he discourage it. He seems to think that AS is just delaying an inevitable.
So, my search for a treatment continues, meanwhile, I am defaulting to AS. It is not easy not jumping into doing something when you know that you have cancer. If I do formally choose AS, then I would like to participate in a program that may benefit others in the future. I have been looking into Proton Therapy but could not find any long term information on cure rates as well as side effects despite the fact that Loma Linda U has been treating cancer patients for twenty years.
Hi Pkretz, thank for your update. My case is very similar to yours. I was offered and suggested AS from my Uro. I saw a surgeon last week, he also mention AS as an option, though he did not endorse it, nor did he discourage it. He seems to think that AS is just delaying an inevitable.
So, my search for a treatment continues, meanwhile, I am defaulting to AS. It is not easy not jumping into doing something when you know that you have cancer. If I do formally choose AS, then I would like to participate in a program that may benefit others in the future. I have been looking into Proton Therapy but could not find any long term information on cure rates as well as side effects despite the fact that Loma Linda U has been treating cancer patients for twenty years.
Thanks for comments. Study to which I am referring, if anyone is looking for more info and isn't familiar, is the Prostate Active Surveillance Study (PASS) funded by Canary Foundation.
I'll read through the study protocol/schedule and summarize here when I get a chance. And, I'll certainly learn more later in the fall or next spring when I'm officially enrolled.
Last edited by Administrator; 09-23-2012 at 09:54 PM.
pkretz,
Read "You Can Beat Prostate Cancer: And You Don't Need Surgery to Do It by Robert J. Marckini" or "PROTONS versus Prostate Cancer: EXPOSED". Not every doctor is a proponent of active surveillance or watchful waiting. Why take a chance? Consider Proton Therapy. You can check it out at MD Anderson in Houston.
Bob
Hi Harpman, I have an interest in PT, watched the video and read the book forwarded to me from Loma Linda U. Still unable to find any study on long term SEs. Is there any study that you can share re PT that has been done within the last few years? Most of what I read talked about the higher cost of PT but no better results? My insurance company covers PT but The lack of formal studies gives me a pause.
Mp
Last edited by moderator2; 09-23-2012 at 08:54 AM.
Hi Harpman, I have an interest in PT, watched the video and read the book forwarded to me from Loma Linda U. Was unable to find any study on long term SEs. Is there any study that you can share re PT that has been done within the last few years? Most of what I read talked about the higher cost of PT but no better results? My insurance company covers PT but The lack of formal studies gives me a pause.
Mp
Last edited by Administrator; 09-23-2012 at 09:55 PM.
I share the same issues with proton therapy. I like to get my information from peer-reviewed journals rather than blogs and promotional sources, and in spite of many years of operation (proton is one of the oldest therapies) there has been very little published.
Dr. J. Coen at Mass General (the twin machine to Loma Linda's) recently looked at the quality of life scores for a group of 72 men undergoing proton therapy. He found that after 2 years there were increased scores for incontinence (3.2 baseline vs. 9.9 long-term), obstructive/irritative voiding (20 vs. 24), bowel (4.4 vs. 8.0) and the worst deterioration was in sexual dysfunction (25 vs. 48). J Clin Oncol 29: 2011 (suppl 7; abstr 68)
In an analysis of the SEER/Medicare database published in JAMA this year, the authors found that there were no significant differences between IMRT and proton in the rates of most morbidities, although proton was a third worse in terms of GI symptoms. JAMA. 2012 Apr 18;307(15):1611-20
In terms of cure rates, I have looked for but not found, any breakdown by D'Amico risk category of freedom from biochemical recurrence for proton therapy. The closest I could get was the analysis published by Slater of Loma Linda in 2004. He found that the 5-year biochemical freedom of evidence of disease broken down by their PSA was 90% for PSA ≤4, 84% for PSA 4-10, 65% for PSA 10-20, and 48% for PSA>20. For rough comparison, Zelefsky at MSK reports 8 yr results of 81 GY IMRT of 91% for low risk, 78% for intermediate risk, and 67% for high risk, which seems to be better than proton at Loma Linda.
I have higher hopes for the pencil beam proton machines now operating at MD Anderson and UF Jacksonville. However, they've only been operating now for 2 years. Hopefully, they will be more forthcoming in providing their outcome data than operators of the last generation of proton machines have been.
Tall Allen,
These are important points to bring up with any treatment. Go to the source if possible. 2004 studies don't necessarily reflect the situation today especially when you take into account licensing and regulatory restrictions.
Bob
Harpman: membership is restricted to those who have been treated, are going through treatment, or have been scheduled for treatment, I do not qualify, so no newsletter. I will try to obtain the report you mentioned.
The UsTOO recent hotsheet stated no better results with PT. I am still quite interested, Loma Linda is about 1:15 minutes from my house. Those that have had PT treatment spoke highly of the treatment, but I am looking for the long term stydy on the SEs.
Finally have time to describe what I've been learning about AS protocol in the PASS study. I have a preliminary screening (intake?) appointment on Oct 18th, and will advise of anything further that I learn.
UTSA and Canary PASS Study Protocol. This is description that I'm initially finding, apologize for lengthy post:
Visit 1 - screening
- medical history, exam and extended DRE and urine sample
- blood draw for PSA, serum, plasma, white cells
- biopsy if prior unavailable, or less than 10 cores, or if biopsy and diagnosis was more than 1 year ago
- food questionnaire, supplements use questionnaire, quality of life (QOL) questionnaire
Review of all screening exams, tests, procedures to determine if participate in study - researcher will discuss all with patient as well as other possible options.
Visit 2 - month 3
- PSA
Visit 3 - month 6
- medical history review, physical exam with extended DRE and urine sample
- blood draw for PSA, serum, plasma
- QOL questionnaire
Visit 4 - month 9
- PSA
Visit 5 - month 12
- medical history review, physical exam with extended DRE and urine sample
- blood draw for PSA, serum, plasma
- QOL questionnaire
Visit 6 - month 15
- PSA
Visit 7 - month 18
- medical history review, physical exam with extended DRE and urine sample
- blood draw for PSA, serum, plasma
- QOL questionnaire
Visit 8 - month 21
- PSA
Visit 9 - month 24
- medical history review, physical exam with extended DRE and urine sample
- blood draw for PSA, serum, plasma
- QOL questionnaire
Visits 10+
- repeat cycle until month 60, or study termination
Additionally ....
Study defines repeat biopsy at 6-12 months from study entry, and then every 2 years.
They further advise in protocol that, should cancer progress at any time during AS, the study doctor will discuss treatment options. Participation is at all times voluntary, and we can withdraw at any time.
In discussion last month with Ian Thompson, he and team are actively pursuing strategies to reduce or eliminate need for repeat biopsies. But current protocol is every two years.
We didn't yet talk about details around biopsy alternatives or how close they might be to confirming urine testing strategy vs. biopsy. My view ... we have all been hearing about this idea, but it is still a long ways off until we have biopsy alternative strategies confirmed. I'll inquire further at my 10/18 appointment and advise of anything new that I learn.
