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hopeful and optimistic said:

Dear Max, I am sorry for your

Dear Max, I am sorry for your diagnosis, however the biopsy shows a low aggressive, low volume cancer. At this time you are a perfect candidate for Active Surveillance. It is very possible, about 70 percent of the time, that your cancer will not progress, and you will die with PCa, not because of it.

I strongly suggest that you have a second opinion on the pathology of your biopsy, since determining Gleason scores are subjective, and it possible that you may not have any cancer. I suggest that you have your slides sent to a world class pathologist, since there is a difference in skills among pathologist, as well as other doctors.

An MRI can show if there is extracapsular extension, that is , if the cancer is outside the prostate , if there are suspicious lessions in one lobe or two, the extent of the suspicious lessons. There is a difference among MRI's. I suggest that you ask for an multi-parametric MRI with a Tesla 3.0 magnet. This MRI shows very high resolutions. It is the best that I know of that is in clinical use.

The findings of an MRI shows "suspicious" and is not documented by a biopsy. In the previous thread that made, I recommended having an MRI, then a biopsy of the suspicious lessions. If you decide on an Active Siurveillance program, this is a preferred method. Having an MRI before a biopsy is  part of what I am doing to monitor my cancer. So far I have been in an Active Surveillance program for the last 5 and 1/2 years. Please click my name to see what I have done and pertinent information to choosing an Active Surveillance program.

"Active surveillance with delayed treatment if necessary" is a valid treatment option where one can avoid the very possible side effects of Active treatments. These side effects can include, but not limited to incontinence and ED.  An Active Surveillance protocol can last  a life time , or if treatment is necessary, studies have shown that a man  who is in a valid  active surveillanc program, can still choose his initial treatment choice if desired without any negativities to the results of treatment.

A man who is 58 years old is candidate for Active Surveillance. Where I am treated , in an active surveillance protocol, there is also a  man who is 35 years old who is in the same program.

A few years ago there has been a recommendation not to do a PSA test among various groups of men, in my opinion mainly because there has been much over treatment of men who are eligible for Active Surveillance as you are. Many of these men have had side effects from the treatments. 

Lately with increased techology there are more men, who are eligible for AS , who are following this protocol. As I understand it is about 20 percent now. About 5 years ago when I was diagnosed only 10 percent did AS. Much of this is as a result of unreasonable fear of the patient, and of urologists leading the patient into treatment, becasue this is 'what they believe in or can make a profit from"

Additionally please be advised that you are in no rush to make a decision since you have a low volume, low aggressive disease.

Best

 

 

Max

I took you as a member of the club for the long assistance you provided to your friend with the cancer. It is most unfortunate that you will continue within us. I am sorry for the positive diagnosis.

In any case, you know that the info collected so far points for a low aggressive form of cancer which progression may never border your life. Treatments will surely prejudice your status (QoL) but they may free you from the cancer for good. You need to get second opinions from specialists and family, and need to know exactly about the risks involved in each treatment. This is a difficult decision that only you can take.

The PSA value is not totally produced by the cancer. The inflammation may be accounting for a big “chank” in the total serum. The "minor nuclear atypia” may refer to gleasons patterns lower than 2.

We want to help you so you should shoot your questions.

Best wishes in your continuing journey.

VGama

Max Former Hodgkins Stage 3 said:

Appreciate Welcome

Vasco and H&O,

Thank you, guys ! It was highly beneficial that I began studying this stuff over a month ago, or the Biopsy Report would have meant nothing to me.  As I said above, the urologist did say to take my time with this decision. She briefly discussed Active Surveillance at the beginning, and I know that this is a more proactive approach than when it was called Watchful Waiting, years ago.  She agreed with me that my age is perhaps the strongest counter-indication of doing that, which Dr Scardino's Prostate Book agrees with (I plugged in my values to the Assessment in his book, and it suggests against AS in my case, although it appears "borderline". But it is a reasonable option.  He is one opinion among many others. I mentioned his book before, and he is Chief of Surgery at Sloan Kittering. (Avery Press, Revised Edition, 2010.)

A current close friend (now 72) had a biopsy four years ago with one positive core, and another a year later, with NO positive cores. He has been in AS these 4 years, and is very satisfied with it, and of course has had NO side-effects.  On the other hand, two other friends both had RPs immediately after diagnosis at around 58, and both died at 72.  Amazing, how almost identical their clinical paths were.  Both were symptom-free and had great lives for over 95% of the time between surgery and the end.  Neither had any pain or real problems until the last six months or thereabout.

My urologist's office got me an appointment with a radiation oncologist on Monday (faster than I expected), and I will get his assessment. I know they do IGRT and IMRT, and also have the Varian TrueBeam System (similiar to Cyberknife). I met this doctor years ago when I first got lymphoma, because there was some thought that I might need radiation, but never got any. He is very relaxed and optimistic, which I highly prefer in a doctor.

Regardless of what he says, I will also meet the surgeon who I mentioned before, who says he had done many, many hundreds of RPs. Looks relatively young on his video.

A lot to figure out.  I hope SwingShiftWorker might comment on what he thinks of possible RT, given the specifics of my results.

max

Thanks for asking for my opinion.  Vasco and H&O have already given you good advice.  Your PCa diagnosis is very similar to what mine was and sounds very minor.

I think you would be a good candidate for AS and I'm not sure why your doctor recommends against it.  Personally, I rejected AS because I did not want to have to go through the surveillance process and have to constantly worry about what the result of the next PSA test would be and what treatment I would have to choose if it rose too much and what might happen if I waited too long. 

Like other men, I just wanted the PCa gone BUT I didn't not want to have surgery because of all of the risks involved in that.  So, I looked for another method of treatment that would provide the best possibility of success in eliminating the cancer with the fewest potential side effects -- most importantly ED and incontinence.  That turned out to be CyberKnife for me. 

I was diagnosed in Jan 2010, treated w/CK in Sep 2010.  After some worrying irregularities, my PSA finally dropped below 1 in Dec 2013 and dropped lower in June 2014, whch indicates the the cancer is in remission.  Due for another PSA test in Dec 2014.  I also had an MRI/MRSI scan done a year & 1/2 ago, because of increasing PSA levels in mid 2013, which found no evidence of choline (an indicator of cancer) in the prostate or adjoining areas.  So, as far as I know, I am now currently free of PCa and I am much happier and relieved knowing this.

However, the current "policy" thinking in medical circles is that too many men are treated "unncessarily" for PCa and that early treatment of PCa by surgery and other methods is a waste of money and, in the case of surgery, subjects too many patients to unjustified risks and harm.  

For men who are thinking of choosing or know of no other option than surgery, I heartily agree that AS would be the better option. However, for men who are considering CyberKnife or other advanced methods of radiation treatment, I can see no reason (other than $) not to receive the treatment, given the high probability of success w/o the risk of surgery and w/mininal risks of debilitating and life changing side effects.

So, YOU need to decide whether AS is something you want to do or not.  If not, I'd recommend you investigate the Varian True Beam system to see if it is truly comparable to CK or not and, if it is, I would recommend that you chose it for your for treatment.  If not, I would recommend finding a site where you can get CK instead. I would not recommend, IGRT and IMRT unless you have no other choice.  They have been used successfully for the treatment of PCa (often after failed surgery) but do not deliver radiation to the prostate as precisely as CK does and require many more treatment sessions than CK does (usually 40 vs 3). 

Good luck!

Old Salt said:

Five CK treatments

With a Gleason score of six, the CyberKnife (CK) protocol would involve five treatments of  ~7 Gy each. The protocols vary a bit from site to site with the intent to limit injury to adjacent tissues.

You wrote that you didn't want to consider AS. How did you come to that decision? I agree with the earlier posts that AS appears to be an alternative.

With CK, you'll get either 4-5 treatments every other day in order to avoid radiation toxicity/damage.  My reference to 3 was a mistake.  However, your estimate of only 7 gys per treatment is way off.

Here's what I said in another thread about that:

"There is some confusion about the reported radiation dosage for CK prostate treatment and there has been a lot of variation in the radiation dosages adminsitered as indicated in Table 1 of Katz's Oct 2010 report. The closest treatment to mine was listed at the 2nd to the bottom in Table 1 of Katz's report.

See: http://www.firstdaytoncyberknife.com/images/pdfs/ckprostatetcrtak.pdf

CK is generally administered in dosages of 35-40 gys/treatment (usually in 4-5 sessions) BUT the total daily dosage is actually hypofractionated and delivered in 20-30 smaller doses in the 1.5-1.8 gy range (all around and at different angles of attack) AND the total BED (biological equivalent dosage) of all of the treatments is around 92 gy (or at least it was for me) but from Table 1 in Katz's report the BED has ranged from 87 to 125 gy."

So, it is the BED (and not the daily or hypofractionated radiation doseage) that is MOST important to note and BED is the ONLY meaningful measure of the total radiation dosage delivered for comparative purposes between difference radiation technologies using different fractionalized radiation dosages and delivery methods"

CK as designed to replicate the use of HIGH dose Brachytherapy.  See, for example: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746400/

In any event, I chose CK over AS for the reasons stated.  I wanted the cancer GONE and I didn't want to bother and worry about constantly monitoring my PS every 3 monts FOR LIFE (n addition to the annual or bi-annual biopsies that are usually required) if there was no change or until the PSA level went up to a level (or a later biopsy revealed a maglinancy) that required treatment later when it might actually be TOO LATE to treat the cancer.

It's bothersome and worrisome enough to check my PSA every 6 months (currently) to see if the reading is at or below the last one, but at least I know that the last reading was below 1 and that my MRI/MRSI scan a year and 1/2 ago was clear of cancer.  So, I don't dwell on it the way I might if I was in an AS program. 

CK was available to me and was covered by Blue Shield, so I went for it and don't regret it one bit.

Max Former Hodgkins Stage 3 said:

More Thought

 

Thanks for the updates, Old Salt and Swingshift.  Not only do we have to sort these decisions out beforehand, but we have to be OK with them afterward. Or at least live with them.

I re-read the chapters in Dr. Scardino's Prostate Book regarding choosing a treatment and the pros and cons of each, and find that he has not only profound technical expertiste, but a lot of common sense and appreciation for how hard these decisions are. He writes in several locations that there is almost never only one good decision available.  Re-reading the Active Surveillance chaper I was struck at how I had overinterpreted when he advises againt it, and it is clearly reasonable in my case. 

His reasons for why the men opt against it reads almost verbatim with some of what SwingshiftWorker just posted: Peace of mind, the idea that a guy would rather have the disease gone than live in worry, although everyone worries anyway.  The doc also mentions that a significant percentage of men who begin AS later opt for radiation or surgery, even with no worsening of their annual surveillance results (30% within five yeas). They just sort of "lose their nerve." I understand that, and that still leaves AS as a valuable tool during the time they utilized it. His main negative toward AS is that it may be quite hard to know when to transition to a curative therapy, and in some cases the window of opportunity for cure might slip by.

I tend toward anxiety and worry anyway, and as I have stated, will choose between radiation or surgery, after I talk to very experienced practicioners of each.  I have ruled out Brachytherapy, although he says it s often a reasonable option in indolent disease, but adds it is counter-indicated for men with significant flow problems, such as I have had for several years now.  The doc further states that these decisions should include family (Vasco mentioned this recently also), and my wife is just not comfortable with AS. 

Swing, you mentioned the anxiety of follow up tests for wellness. After several years at the Lymphoma Board, I must say that that is probably the most common issue discussed there; what I call Relapse Anxiety.  It is just a universal thing, but diminshes with time.  I do not believe it ever goes away totally.  Another attribute of the evil known as cancer.

Please keep those thoughts coming folks,

max

I should also mention that if CK had NOT been available to me at the time, I probably would have opted for AS, because my PCa was relative low risk and NONE of the other options were acceptable to me in terms of the risks or other factors involved.

The only other option that I might have persued then was Proton Beam Therapy but it was NOT covered by Blue Shield, the out of pocket cost was around $50k and the closest PBT center to me was in 400 miles south in Loma Linda, CA, where I would have to rent a place to live for the 8 weeks of treatment   Could have done that if necessary, but fortunately CK was available to me instead.

Also, I really don't think about my PCa status much anymore.  It only comes to mind now when I'm due to take my next PSA test.  Then there is some anxiety before taking the test that is only alleviated after the test result is received.  Then, as long as the result is what it should be, I can forget about it again until the next test.

The only difference between this and AS testing is that w/AS you know you still have the cancer and are worried when (if ever) it might get worst and whether you will still be able to treat it effectively when you find that out.  After treatment, if it was successful, you know you've been "cured" (for now) but still worry whether it will return. 

So, I guess the "worry" factor isn't all that different w/AS or post-treatment.  It just depends on which kind of "worry" you can live with best.

Max

I enjoyed reading your post. You are well aware of the pitfalls of being a cancer patient; however, this new chapter in your life may become worse than what you have experienced previously. The problem is that, as upto this precise day, there is no feasible silver bullet to round off the prostate cancer. And then we ask why?

And the answer; …….because, treatments do not address the cancer itself. These are done homogeneously to all patients, in a guessing mode, in spite of exist several types of cancer and people. They are the best available tools but do not assure the desired goal. We will be faced with the consequences that can be good but also become permanent nightmares.

You probably heard that cancer makes part of our aging process which progressive instructions have been encrypted in our gens, existing from the very first moment of conception, even before we are born. The human blocks, the cells, got the means to persist in living as well as the “switches” that can be turned OFF when a particular function is no more necessary. This procedure in cell’s behaviour gives the impression that the cells for no particular reason decided to live "la Vida Loca", which consequencies are  obvious recurrences. In other words, cancer can be dormant for life until we die from other causes. But it can be awaken (switched ON) following the imprinting “instructions”, or it can be “whipped” by a stressful moment in life or an inducer from outside sources (pollution, radiation, chemo, etc, and the environment). Healthy ways of living is probably, for the moment, the best we can chose, until we find a treatment that addresses the cancer itself, those cells living La Vida Loca.

There is a factor of luck in the outcomes of present treatments. Some do better than others and may never find the desired peace of mind.
This that you discussed above is reached when we feel that we have reacted and did what we think to be the best, in the best of our acknowledge. It may be your present stance confronting the cancer. You set it nicely.

"Cancer? No cancer? -- I give it all a big yawn. I am not apathetic, but I am in tune with my mortality.”

In my case it took me some time to reach that peace of mind. When I heard the words “You have Cancer”, I went bananas. In fact I still  do not recall the period between leaving the hospital and arriving at home (6 stops on the subway). I just remember to turn my back to the doctor and then see the face of my wife staring at me. I realized I was at home, but didn’t know how I got there. Cancer was equal to death in my thoughts, so why should I have it? I was not a sick man, very young (50Yo) not a bad boy (maybe a few times), so…. There was an error in the results, they mixed my biopsy needles with the ones from someone else.
Well, now I see it as a joke. How far away was I at that time from the reality.

Here is a very interesting link summarizing Cancer Dormancy. It all became possible for the many researches done in the study of the human Genome and behaviour of cells.

http://en.wikipedia.org/wiki/Cancer_dormancy

http://en.wikipedia.org/wiki/Cell_cycle

 Best

VGama 

Max Former Hodgkins Stage 3 said:

IGRT

Met with radiation oncologist today, very cordial .  Said my apparently minor disease  should be very easily killed with rad. Said they have a brand new Calypso system, but I am disinclined to be a patient during their learning curve. I believe Calypso is another Varian innovation.  Recommended IGRT with fractional delivery over 38 days, for a total of 76 Gr. He said his department does do 5-day also. Said IGRT involved daily updated imaging for each treatment.

Did DRE because he  considers ultrasound-generated gland weights to be quite inaccurate. Asked a lot of Urinary health/BPH questions. Our session lasted 75 minutes, and he was very patient.

Stated that regarding first-line therapy,  IGRT now matches RP within 1% in long-term survivorship.  Welcomed me to see a surgeon and weigh options.

All thoughts ENCOURAGED, especially regarding Calypso, which I had never heard of. Said it involves placing actual transponders inside the gland for stunningly accuate delivery. 

Fiducials are used to track movement of the prostate during irradiation to minimize irradiation of adjacent tissues. In my humble opinion, this is the way to go.

And yes, your prostate does move as you breathe, even when you lie still on the treatment table.

Although some people have experienced the placement of the fiducials as less than pleasant, when done by an experienced doctor (either a radiation oncologist or a urologist), the procedure can be easy for the patient. In my case, I got sedated, and before I knew it the procedure was done with. Because of the anesthesia/sedation, I couldn't drive home and had to be accompanied by another person; this is standard procedure. The fiducials (4 or 6, usually) then have to stabilize before the radiation treatment can begin.

Your specialist recommended IGRT (38 treatments). Considering your Gleason score of 6, SBRT (CyberKnife) should be considered as well (5 treatments). The latter is obviously more convenient for the patient and less expensive (to you, the 'system', or both).

Anyway, your prognosis is good, although the radiation oncologist went out on a limb when he said that he can kill the cancer. A percentage success rate would have been more scientific.

Max,

I am so sorry for fact that you have had to, once again, face a threat from cancer. With reget, I welcome you to the club.

I can relate to your need to push away from thinking about it for a time - as I did while I considered my options. You are welcome to follow my story here: http://csn.cancer.org/node/264905 .

You have already gotten good advice here, and fortunately your Pca is a low grade/low volume and you do have ample time to consider how to proceed. The varied treatment options for your Pca, along with any potential side effects, can make the decision more difficult.

I would have preferred AS, however the number of positive cores (3 of 18), and 2 second opinions with increased Gleason scores from highly respected teaching hospitals forced me away from that option.

I ruled out surgery (either robotic (DaVinci) or open) immediately. Far too many risks.

IMRT was an option, but I didn't like the potential for damage to nearby organs and the up to 8 weeks of daily treatments.

Never really considered brachytherapy - didn't care for implanted radioactive seeds.

My choice was to go with CyberKnife (SBRT). The implants (fiducials) were placed with NO discomfort at all.

Each of us have to make the best decision for us. What works for one, may not be the choice for another with a similar Dx. And none of us (or our treating physicians) know with certainty if the Pca will kill us - or if we can live with it and die from something else. It seems you are a perfect candidate for AS, but you've stated you will not go that route.

Whatever choice you make, know that we will respect your decision and support you along your journey.

Take care,

CC

Max Former Hodgkins Stage 3 said:

Agree

Thanks for joining in on this thread, CC.  Like you, everyone who has commented on CyberKnife to me has been glad they used it.

It is not available at my local teaching hospital group, which is large and top quality, but not a famous name.  They have about 30 oncologists on board, and do serious research and clinical trials, but thankfully trials are not something I have needed. And my insurance, while excellent, is linked to the hospital itself. I can go out of system, but only with a substantial financial penalty. If my case were a lot rarer or complicated I might look elsewhere.  The hospital does have a Varian system which more or less is a competing system with CyberKnife, and most reviews conclude it is equal in quality and technology, but I have not studied it a lot.   One of the guys sent me several articles discussing these at my previous thread here at the Prostate Board, which was entitled "Once Again," if you are interested in researching it further.

max

It seems that the treatment plan is falling into place.

Active Surveillance is out; brachytherapy is out; Cyberknife/SBRT is out, and you have confidence in the IGRT proposed by the specialists at the teaching hospital.

Moreover, you don't have to decide 'tomorrow'.

Best of luck with the treatment. If you need more info on IGRT just ask.