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New diagnosis, looking at options

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

Hello,

I'm returning to the CSN after a bit of an absence. I am a 52 yo and a survivor of stage 4 SCC of the tonsil. Now I have a new diagnosis of stage T1c with a Gleason of 3+3. As a "young" man I have read enough to know that I probably should do something, the question is what. I am leaning towards the seeds (I went through IMRT with head and neck and it was the toughest thing I've done in my life)but I'm interested in what others with a similar diagnosis have done, what their outcomes were and how much they are being affected by side effects.

Thanks,
Wayne

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Wayne,

Welcome to the forum although I'm sorry you have to be here. You've found a good place and there are many men who post here regularly who have faced or are a facing a similar situation and will be happy to share their experiences and offer suggestions.

First, it would be helpful if you could share a bit more about your prostate cancer statistics such as your PSA, DRE results, how many of your biopsy cores were positive and what perecent involvement they showed, a family history (or not), any other health issues that might affect treatment options, and what your doctors are recommending. You probably know by now that you're on the young side of the diagnosis curve for prostate cancer and the choices you make could have a dramatic impact on the rest of what most likely will be a long life.

A 3+3 Gleason is a (relatively) good thing as far as prostate cancer goes but knowing the other statistics can help you put in in perspective.

Certainly brachytherapy is one option but there are many, many others as well for someone with a Stage 1 diagnosis, including IMRT which you already know about.

One of the first things I would do in addition studying about options and potential side effects is get a second opinion on the biopsy from a different pathology lab. Johns Hopkins is one that is frequently used. Your doctor can explain how to do this.

==============================
Age at Dx: 59, diagnosed in March 2010. PSA 4.3 which dropped to 2.8 after eliminating dairy. Gleason 3+3=6. 1 of 12 cores positive with 15% involvement. DRE normal. No physical symptoms or family history. Prostate size: 47 ml. Stage T1c.

Treatment: SBRT via CyberKnife. 5 fractions each lasting about 45 minutes over 10 days. Side effects: None.

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

According to my doc I am one of the "overdiagnosed". My cancer was found only because my PSA went from a 1.8 to a 4. My first set of cores only came up with High Grade PIN. Second set came up with 1 core (out of 12) testing positive and it was less than 20%.

My doctor said if it was him he would probably just just to the watchful waiting thing but he understood my nervousnessness as I have been through stage 4 hell before. I have some concerns about any radiation and don't much like the nember of side effects with the surgery. I'm interested in hearing what radiation methods had the least bad side effects and also if maybe I should wait for some new drugs to either get a longer track record or be approved.

Also, if anyone has an opinion on who I should get a second opinion from in the Portland Oregon area I would appreciate it.

bdhilton
Posts: 759
Joined: Jan 2010

Have your results read by John Hopkins or Northwestern… both have undisputed world renowned pathology departments I had my second read by Northwestern and ended up have Dr Catalona performing surgery at Northwestern (Chicago) and I live in Atlanta… I was 55 at surgery this year and diagnosed at 54…

Best to you in your journey with PCA...

Jims wife
Posts: 1
Joined: Sep 2010

Did you have a local doctor willing to take over treatment after returning to Atlana after surgery?

Swingshiftworker
Posts: 656
Joined: Mar 2010

IMHO CyberKnife is currently the best method of radiation treatment with the fewest side effects -- virtually none -- for early stage PCa patients (Gleason 6; Stage T1c; PSA less than 10 or so).

Kongo, ViperFred and I (who are all members of this forum) have received this treatment. ViperFred received his treatment over 2 years ago (May 2008)and reports a PSA nadir of 0.034 as of August 5, 2010 and no ED or urinary side effects. That's incredible! Kongo had his treatment about 3 months ago and reports no side effects since then. I just had my last CK treatment (out of 4) at UCSF Medical Center yesterday and have had no side effects since the 1st treatment on 9/15. Reports I received from other CK patients who were treated 2-3 years ago at UCSF were similar to those reported by ViperFred. However, one of the UCSF patients that I spoke w/by email had some urinary irritation about 18 months after treatment, which is not uncommon with radiation treatment, that resolved itself and did not require any medical intervention.

If you're not familiar w/CK, you can find information about it on the manufacturer's site where there is a open forum supported by CK physicians who actively respond to messages from patients about CK. Here's a direct link to the forum: http://cyberknife.com/Forum.aspx?g=topics&f=2586.

You can also find some interesting pro-CK info on the following site as well: http://www.iprostatecancer.com. The CBS newsclip on thid site reporting that Blue Shield CA refused payment for CK is now dated, because BS CA is paying for my CK treatment and has issued a recent policy statement approving CK for treating prostate and other cancers. There are also a number of abstracts of medical studies posted on this site that speak to the limited side effects of CK.

Kongo can give the the technical details better than I, but basically treatment w/CK involves only 4 (9.5 grays each; total 38 grays) or 5 treatments (7 or 7.25 grays for a total of 35 or 37.5 grays) -- either daily or every other day -- using a computerized SBRT (stereotactic body radiation therapy) robotic device that can deliver externallly applied radiation in a very precise pattern that takes into account body and organ movement w/o the need for protective devices or body casts as are used by other methods.

The total amount of radiation used w/CK is much less than used in other radiation methods (eg., IMRT or EBRT) due to the precision of radiation delivery and the amount of radiation delivered can be varied depending upon the direction of delivery in order to minimize collateral tissue damage (including but not limited) to the rectum, urethra and vascular bulb which (if not properly controlled) can cause rectal bleeding and damage, urinary strictures and incontinence and/or ED (respectively) so commonly experienced with other treatments.

FYI, you can wear your street clothes and listen to your iPod while receiving treatment on the CK table. The only thing they do is wrap your elbows loosely w/a velcro strap to keep your arms from moving into the path of the radiation beam BUT you can still lift your arms and scratch your nose if you need to. How cool is that?

You should also look into Proton Beam Therapy, which also has reportedly few side effects, but I think that CK trumps PBT because it requires 40-45 treatments over 8-9 weeks (as opposed to only 4-5 treatments over 1-2 weeks for CK), which requires you to live near the PBT treatment site for a least 2 months, requires the fitting of a body cast so that you don't move during the treatment (since PBT does not adjust for body movement) and the insertion of an air filled balloon in your rectum prior to each treatment (not required for CK).

BTW, I got a 2nd opinion on my biopsy by Dr. Jonathan I. Epstein at Johns Hopkins University, who is considered one of the foremost experts in prostate biopsy analysis in this country. Cost was $225 and turn around was less than a week.

Good luck in your search for the treatment method that works best for you!

bdhilton
Posts: 759
Joined: Jan 2010

I am happy you believe that you selected the best treatment…but your side effects come after a year or two so please do not pretend that your treatment is the best or is without side effects as time will tell …all the best

Swingshiftworker
Posts: 656
Joined: Mar 2010

Didn't say CK had NO side effects.

Just the fewest when compared to the standard radiation options -- brachytherapy (BT), proton beam (PBT), IMRT and EBRT. FWIW, ViperFred's experience and the reports I've received from the 3 men who have received CK in the past 2-3 years confirms minimal side effects, even after "a year or two." This is also confirmed in the abstracts of CK studies on the iProstate Cancer site, which generally report only about a 3-5% occurance of urinary and rectal complications and just a small number PCa relapses after CK treatment after 2-3 years.

Obviously, no treatment is PERFECT and CK isn't for everyone, but so far CK appears to be FAR superior to any other method of treatment -- including surgery -- when you take into account the side effects and quality of life after treatment and not just morbidity -- for men w/early stage PCa where the cancer is confined to the prostate.

These are the facts as reported by others and not just my opinion. So, I'll just let the facts speak for themselves.

bdhilton
Posts: 759
Joined: Jan 2010

Shift…I am not here to argue with you…but 2-3 men that had cyberknife 2-3 years ago does not make a case study if I am reading you correctly… CK could be the best thing since sliced bread and for sure it was for you and is the best thing for anyone that selects this as their treatment choice but please place thing in perspective. At best and worse the side effets are as good or bad as raditiaotn is....Not evernon has side effects so hope for the best and enjoy the best of the best…Peace

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Swing, I think you summarized the approach and advantages to CK rather succinctly. One thing I would add is that although the actual radiation in your case was 38 Gy, a relatively low dose, the biological equivalent dose (BED) is much higher because of the ability of the CyberKnife process to deliver SBRT extremely accurately, and many studies have shown that the higher the dosage, the better the treatment is in effectively treating the cancer. The problem before CK is that higher doses of radiation also brought about increased toxicity in urinary and rectal side effects. CK seems to have effectively ameliorated that problem.

Bdhilton well knows that you were not implying the anecdotal cases you referred to constitute a study. His views in this area are all too familiar to regular readers of this forum and I see little value in plowing again that already torn up field.

But segueing into the subject of CK studies, there is a new study out which summarizes the latest results of several CK trials in the October issue of Technology in Cancer Research & Treatment. Of note, the CK protocol that Swing and I followed closely matches a study performed by Dr. Katz with over 300 patients at his institution in Florida with the following statistics at a MEDIAN follow up of 30 months: Freedom from PSA relapse: 100%; Grade 3+ late stage urinary or bowel toxicity: 0%. Erectile function preservation rate: 87%.
http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf

By any measure those are encouraging statistics. Other multi-institution studies (of which I am part) are underway and my doctor indicated to me that the early results are tracking in line with the Katz statistics indicated above.

Regardless of individual opinions, men who elect to be treated with CK certainly have none of the near term recovery issues associated with surgery. Whether or not our early results hold true over the very long term obviously remains to be seen, but all of the indications are that CK will be a very effective treatment for men with low risk cancer.

Swingshiftworker
Posts: 656
Joined: Mar 2010

Kongo: You're much more plugged into the technical and scientific data on CK than I am.

I chose CK based more on the anecdotal evidence and general reports that I read on the various treatments available than I did on scientific data or studies. However, the article you cited, which apparently summarizes all of the available studies on the effectiveness of CK to date, supports the conclusion that CK is the best available treatment for men w/early stage PCa. The data speaks for itself and there is no need to respond further to BD.

I meant to comment on the increased efficacy of the CK based on the greater precision of the dose distribution, but I didn't have the language to express that until you mentioned BED (biological equivalent dose) which was discussed at length in Katz's article.

I received 4 treatments of 9.5 Gy each, every other day, for a total of 38 Gys. This is on the higher end of the CK treatment dosages. Katz suggests that 5 treatments of 7 Gy each for at total of 35 Gy is optimal dosage. However, BED varies widely based on the alpha/beta (a/b) ratio (cell sensitivity to radiation) used. Katz uses an a/b ratio of 1.5 Gy and a BED of 92 Gy in arriving at his conclusion that 35 Gy is the "optimal" dosage. However, a study at U of Maryland that I just found concludes that the a/b ratio of prostate cells is actually 3.1 Gy +/1 0.5 Gy. See: http://www.ncbi.nlm.nih.gov/pubmed/12504054.

For CK dosages of 38, 36.25 and 35 Gy, respectively, the BED (using a 1.5 Gy a/b ratio) is 125, 96 and 92 Gy BUT, when you use a 3.0 a/b ratio, the BED is 97, 78 and 72 Gy instead. See Table I in Katz's article for the comparative BED data. So, which a/b ratio you use makes a huge difference in computing the BED and I think that the actual BED received is in question. Katz's conclusion that the use of higher dosages over 35 Gy creates greater toxicity risk without significantly greater curative benefit (because "[h]igher doses would be on the flat part of the sigmoid dose response curve (Figure 2) and yield no extra benefit" -- see Katz at page 468) or that "[t]he higher peripheral doses achieved with heterogeneous planning may not be necessary to eradicate prostate cancer cells" (see Katz at page 469) remain to be determined.

Nevertheless, it seems clear that the higher radiation dosage you receive, the greater the risk of tissue damage and complications caused by radiation toxicity (regardless of the type of radiation treatment received -- be it CK, BT, IMRT or EBRT). The 4 x 9.5 Gy CK treatment that I received was based on heterogeneous planning, "which involves using more beams to achieve a heterogeneous (radiation) dose distribution throughout the prostate, simulating an HDR brachytherapy plan. . . . Urethral doses are also lower with CyberKnife heterogeneous treatment than with HDR, suggesting an advantage in minimizing urethral complications. The number of beams necessary to accomplish heterogeneous treatment is 230-318 which leads to longer treatment times of approximately 90 minutes." See, Katz at pg 468. My treatments lasted about 90 minutes, which confirms the use of heterogeneous planning. I also received my 4 treatments every other day (instead of daily), which in the King study (discussed by Katz at pg 466) apparently reduced the incidence of urinary and rectal complications.

So, despite getting a higher radiation dosage, hopefully the mitigating effects of heterogeneous dose distribution and the every other day treatment schedule will mitigate the higher toxicity risks in my case.

Time will tell.

BTW, Kongo: What method of planning and dose distribution did you receive? -- homogeneous or heterogeneous and 7 or 7.25 Gy?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

It sure sounds like you have a pretty good grasp of the technical details. Frankly, whenever the papers start delving into the alpa/beta ratios, variations in dosage compared to optimal and so forth, my eyes start to glaze over and I have to reread those sections sometimes several times before I really get what they're saying. Sometimes, I never get it as it's been quite a few years since my nuclear physics classes from my undergraduate days at Purdue...and I didn't take THAT many of them.

Also, in response to your question I'm embarrased to say that I don't recall my method and dose distribution and I'm traveling and away from my files until next Friday when I have my three month follow-up. I'm pretty sure I hade 7.25 Gy over five fractions but am drawing a complete blank on homogeneous or heterogeneous.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Wayne:

Many would say that AS certainly is a viable course of action in your case of low risk cancer which could very well be considerd indolent. Another statistic you may want to look at is the PSA density which is a measure of PSA divided by prostate volume. They should have calculated your prostate volume when they did the autopsy. A PSA density less than 0.15, as I recall, is a strong indicator of indolent cancer.

The only thing about someone on AS at your age is that since prostate cancer in an inherently metatastic disease, given enough time it will grow and spread, even if slowly. Given the long life expectancy you have you need to carefully weigh the potential risks associated with waiting for treatment. Most indicators are that if you are diligent with your AS you can detect a change early enough to seek treatment without risk. There is the anxiety issue, but frankly, I think if you are well educated on the prospects of continued cancer growth after any treatment, you are never going to be completely free from anxiety.

Had I been five years older, I think I would have chosen to go AS. As it is, I felt I had a better chance in treating it early. Only time will tell.

As Swing indicated, CyberKnife is an emerging treatment some of us have chosen that has early indications of long term cancer free survival with minimum side effects for urinary discomfort, rectal issues, and erectile function preservation. Of course, there are also some who develop side effects and you already know how it feels to be on the losing end of long odds. HDR Brachytherapy, is a more established treatment that has the best results with long term (>10 year) sustaining data. CyberKnife mimics HDR Brachytherapy in its dosage application and the success and side effect curves perfectly match those of HDR brachytherapy for as long as there is CK data...about 4.5 years in the oldest cases. In addition to CyberKnife, SBRT is also administered by other systems such as the Varian RapidArc system.

Besides CK, IMRT which you already seem to have some degree of aprehension about, is probably the next most used radiation treatment. Although the dosage plans are similar, a big difference between IMRT and CK is that IMRT only adjusts for the position of the prostate on a daily (once a session) basis. CK on the other hand tracks the movement of the prostate in real time and adjusts its position to compensate for frequent prostate movement caused by bladder filling, gas in the colon, or respiratory effects. With its real time adjustment, CK minimizes any radiation to surrounding tissue or organ and thus has a lower incidence of urinary or bowel toxicity.

Seed implants are quite popular and also effective but have been associated with higher rates of toxicity with the bowel and higher incontinence and ED rates.

Proton therapy is popular with many although some studies have shown it is no more effective than IMRT and takes about as long to administer.

Can't help you with who you might consult with in Oregon but I would recommend you take the time to consult with someone who is a specialist in all of the above treatment methodologies to get a first hand perspective of what the doctor who would treat you considers to be the pros and cons.

I would also consult with surgeons, many of whom will tell you that a very young man such as yourself has a very good statistical probability of full recovery with little side effects.

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

You have certainly given me a lot more to go on! I will contact the Providence medical center tomorrow as they do all of the procedures mentioned above. I had my IMRT with them for my neck and although it was very painful I am alive now when I certainly would have been dead within a year. They have a Cyberknife at their new cancer center on the other side of town so I can ask to meet with one of their doctors to see what he thinks.

Again thank you all so much! Keep it coming though because I still have a lot to learn here.

Wayne

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Wayne, I'm not knowledgable enough about the neck and IMRT but from all the reports I've read and the experiences that have been shared by other in this forum I can't recall anyone complaining about severe pain in conjunction with IMRT treatment for the prostate. I have read that some men complain of slight feelings of fatigue that bring on an afternoon nap (not a bad thing in my opinion), or slight feelings of urinary urgency in later stages of the treatment which is usually addressed with ibuprophen in minor cases or perhaps Flomax. Other than that, the many sessions are just kind of a hassle. CK pretty much eliminates the hassle part although I have read that some men are a little tired after treatment and need to rest more. Some men after CK also report a sense of urgency in urination which is pretty much resolved as with IMRT. If you have a center that offers both IMRT and CK, I'm sure the medical directors can give you a good overview of which would be best for your situation.

MCinNC
Posts: 32
Joined: Sep 2010

Kongo,

You said: "Had I been five years older, I think I would have chosen to go AS. As it is, I felt I had a better chance in treating it early."

What was your thinking, or what kind of calculations were you doing, when drawing a line based on age between AS and CK? I'm dealing with the same issues with a similar PC history as yours and would be very interested in your thought process.

Thanks.

Mac

Swingshiftworker
Posts: 656
Joined: Mar 2010

I know you directed this to Kongo, but I made the same choice he made. I am also believe that I'm the same age and had similar PCa stats -- age 59, Stage T1c, Gleason 6 and PSA less than 10.

It will be interesting to see what Kongo says, but in my case I chose CK over AS based on simple family actuarial data. I'm 59. My mother is 96 and still alive. My father died "early" at 89 due to emphysema caused by heavy smoking when he was younger; he probably would have lived longer if he never smoked or just smoked less. Based on this, I calculate that I have a life expectancy of at least 30 years. That's a LONG time.

So, even if I was 65, I would still have chosen CK over AS, especially given the fact that the short term side effects of CK are reportedly minimal and the longer term effectiveness of CK is as good as BT and surgery, which both unquestionably pose greater quality of life risks. BT less so than surgery, but BT has it's own side effects and complication risks that I would rather avoid, if given the choice.

MCinNC
Posts: 32
Joined: Sep 2010

Thanks for your comment. I'm 56, shooting for 86, with T1c, Gleason 6, 2.4 PSA, 1 of 12 cores positive - so I understand the thinking.

I guess the follow up is whether you considered doing AS for the short term? Say, monitor things for 5 years if the disease doesn't show signs of progressing... To let more CK data come available for example, or to postpone potential side effects, etc.? Or, was there some thinking that your best chance for that longevity your're seeking is immediate primary treatment, and to wait may lessen the chance of success?

Mac

Swingshiftworker
Posts: 656
Joined: Mar 2010

I thought about doing AS for a short time but, after finding CK, my only thought was: Why wait?

Based on what I was told, the morbidity risk for AS vs. treatment was the same 5 years out. So, as long as the cost and the side effects are minimal, there's nothing lose if you get treatment (since you statistically have the same risk of dying w/in the 1st 5 years anyway) BUT there's a HUGE gain if the treatment is actually effective in eliminating the cancer because there is no further chance (or at least much less of a chance) of continued cancer growth and greater potential longevity beyond 5 years.

Remember that if you choose AS, the cancer is not going anywhere. If you're lucky, the cancer will be relatively stable (as indicated by your PSA) and you won't need to do anything right away BUT, as has been reported here and elsewhere, the velocity of the PSA readings can rise dramatically in a very short period of time AND, even when you have a low PSA, biopsies have shown a much wider spread of the cancer than was indicated by the PSA readings. So, the longer you wait, the more likely it may be that you'll have a more serious cancer than indicated by the PSA readings and you may be forced into making a very quick decision to accept a much riskier form of treatment -- most likely surgery -- than you would if you treated the cancer earlier, which can have huge negative consequences for your quality of life or, even worse you may be in a situation where the cancer has spread so far that no form of treatment other hormone therapy, chemotherapy and/or EBRT would be of any use.

FWIW, this is why I think many men w/early stage PCa choose surgery as their FIRST option. They just want the out of their bodies as fast as possible, because they can't (or don't want to) deal with the fact that the cancer is there. However, this choice creates serious quality of life issues -- incontinence (requiring the use of catheters in the short term and diapers in the long term and possibly a urinary sphincter transplant in the end), ED (no woody typically for a year or more and possibly a penile implant in the end) and the shortened of your penis length due to the gap created by the removal of the prostate (urologists insist that the penis is not shorter; it's not but it "looks" shorter and that's all that really matters). There are also the basic surgical risks if the surgeon "accidentally" punctures your rectum (which shares a thin tissue wall w/the prostate), excessive bleeding which is potentially life threatening if the bleeding is not stopped quick enough or permanent ED (if all of the nerves are removed and not spared), just to mention a few possible malpractice issues.

IMHO, BT is not much better than surgery. Who wants 80-100 radioactive seeds placed in their body? The 1/2 life of the radiation is a year and you have to be careful not to hold kids in your lap or get too close to pregnant women. You also need a special ID to board airplanes w/o getting stopped or arrested due to the radiation and metal in your body. Like surgery, the success of BT and the quality of life after treatment, depends on the skill of the people planning the distribution of radioactive seeds in your prostate. If the wrong dosage is placed in the wrong place, you can have many of the same urinary, rectal and sexual problems as can arise from surgery. The probabilities of problems w/BT are less than w/surgery, but the risks exist nonetheless.

Surgery and BT were the only choices presented to me by my urologist at Kaiser SF. Didn't like those choices AT ALL, which led me on my search for other treatment methods. If the choice was only AS vs. surgery or BT, I would still be doing AS now. Fortunately, I found CK at UCSF and was able to make the decision to go forward with treatment by changing from Kaiser to Blue Shield which now pays for the treatment (even though it refused to pay for it in the past).

I still have to get PSA tests every 3 months following treatment (for the 1st year; every 6 months thereafter) and there will still be some uncertainty that I'll have to live w/about the course of the disease for at least a couple of years -- just as there would be w/AS -- but at least I've done something about the cancer that hasn't totally f*cked up my body (like surgery certainly would have done in the short, if not the long, term) and I have a chance of walking away from this disease with minimal side effects after 2 years with only a minor risk (as reported so far) of significant negative side effects.

So, IMHO, if you're a candidate for CK and your insurance carrier will pay for it (or if you have enough $ to pay for it on your own, there really is no reason to wait.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Mac,

Your posts always impress me with your insightful questions and your ability to cut straight to the chase.

Swing has it pretty straight in his mind about the reasons he chose CK. He did a lot of research, compared the pros and cons, and went with the option that today seems to offer the best chance for a cure with the lowest likelihood of adverse side effects. While many may not agree, he made his decision based on information and comparison. I agree with him. We both had very similar pathologies and had he been in a more enlightened insurance plan initially, we probably would have been receiving treatment at the same time. As it was, his time schedule is about three months after mine.

In my own case, the decision process was a bit more nuanced. I was never bound by insurance constraints. As a retired veteran, I could pretty much do anything I wanted with full coverage. I was also fortunate in that I could have paid my own way had I sought a treatment like HIFU which is not presently offered in the United States or some other treatment not covered by my Tricare plan. I consider myself lucky that my decisions were not constrained by insurance or finances and I have enormous empathy for men who end up only with the treatment choices offered by their HMO.

I did quite a bit of research and personally met with six specialists. I also did some phone interviews and email correspondence with authors of some of the books I read. By the time I chose my treatment I think I had read more than a dozen books and probably close to 100 papers and thousands of postings on various forums. My wife accused me of trying to outsmart the doctors. In my own mind, I kept thinking that if only I did enough research I would find the perfect solution for my situation. One thing always in my mind then was that once you pick a choice (except for perhaps AS), you’re follow on options become more limited and the risk of side effects increase significantly. So, I knew it was critically important to choose carefully.

On top of all the technical factors, there are the “other influencers” that worm their way into the decision making process. Although my spouse was entirely supportive in whatever I would have chosen to do, she applied subtle pressure to “DO SOMETHING! YOU HAVE CANCER!” Friends and colleagues who I shared my story with also felt that I had to do SOMETHING. Ironically, none of these influencers really knew then or know much now about prostate cancer. To them, cancer is cancer is cancer. Those of us who have gone through this know there is no such thing…all cancer is different.

Ira (who posted in this thread) was a major influence on me as I considered AS. I have had the pleasure of meeting Ira in person and I am always impressed at the diligent approach he has taken to manage his surveillance while continuing to investigate potential treatment options. I agree with almost everything Ira says about AS and the book he mentioned “Invasion of the Prostate Snatchers” is one I wish I had read before I made a decision but it probably would not have swayed me not to pursue the course I did. Another book that influenced me greatly was “The Big Scare: The Business of Prostate Cancer” by Dr. Anthony Horan. I spoke briefly with Dr. Horan and emailed him during my research phase.

At the end of the day the non-technical factors probably had more sway in my decision than the technical. I am still very active at work with a challenging career that keeps me on the road frequently. With our children successfully launched, my wife and I are also traveling more together both domestically and overseas and enjoying the fruits of our labors. My initial diagnosis came at a very inconvenient time for me and frankly, I didn’t want that to happen again. I didn't want to be in the midst of some big project at work or planning an overseas trip or something with my wife and have a new test throw a kink in the works. I also felt that as a relatively young man at 59, I could look forward to another 20-25 years of active lifestyle and didn’t want to risk that by being surprised by an AS speed bump. I believe that this cancer will continue to grow (even thought it may be very slow) even after treatment and I don’t think any treatment will get it all. If that is true, then what we are really doing when we seek treatment is to try to set the clock back far enough so that something else kills us. I call it “cure by bus.” If we get hit by a bus sometime after treatment when we dodder across the street in our old age, then we will find ourselves cured by the bus…not by the treatment because something other than PCa killed us.

So, I hedged my bets and went with a treatment that I researched thoroughly and felt had a better chance of “cure” than any other but also had the advantage of having minimal side effects for most men. Quality of life was more important to me than quantity so I thought I could split the difference between AS and a more traditional treatment with CK. I frequently second guess my choices but have no regrets. I’m confident I chose the best treatment for me (and it’s all relative to our personal situations) and am now moving on with the rest of my life.

Hope this rather long and rambling response to your question is of some value to you as you wrestle with your choice. Being as young as you are and given the histology of prostate cancer, I think the odds are pretty strong that at some point in the future you will likely have to deal with it. If you go AS the research suggests that you can do that in most cases without limiting your follow-on choices. But only you can reconcile the odds in your own life.

Good luck

hopeful and opt...
Posts: 1357
Joined: Apr 2009

You have been diagnosed with early stage, low risk category of prostate cancer.....as a lay person who had been diagnosed with early stage prostate cancer one and half years ago ago, and had studied the treatment options of this disease, it is my opinion that you are an excellent candidate of success for virtually every treatment option.....all the docs in the different speicialties want you. Additionally the posters at this thread who have have various treatments that they feel were successful are touting these treatments..you have to read between the lines since in my opinion some of their choices have not been the best.

I personally have choosen active surveillance.....I feel that it's best for me since there is a very good possiblity that I have indolent cancer, not likely to spread and I may die with the disease, not because of it; additionally if my cancer does progress I feel that I will have enough time to take immediate action for a different treatment choice....I m not interested in overtreating my cancer, and hopefully in the future there is a possiblity that a better cure may come about.

Currently I enjoy an excellent quality of life with no side effects which one may have with another treatment option..............I feel that there is no reason to rush into a treatment that has a good chance of side effects.

Kongo recommended a book "Invasion of the Prostate Snatchers" , so far I have read about half of the book........and I agree with the first seven chapters of the book, which I personally experienced .

Basically this is your choice....do your research.........there is no rush.

Good luck
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Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

As usual, Ira makes very good points and two of them in particular are quite relevant to Mac's situation, in my opinion.

First, each specialist will most often spin their treatment specialty. I was lucky enough to find one (my CK doctor) who didn't do that but I think he is pretty rare. Most of these doctors are very persusive and confident in their recommendations and after all, they're DOCTORS and we have been brought up to trust our doctors. One of the hardest things in the PCa merry-go-round is learning to view all the advice you get with a high degree of suspicion and ask direct, pointed questions. We can only do that if we have done our homework BEFORE we meet with them and for most of us, we get the diagnosis and are immediately thrown in to follow up discussions with specialists without even the vaguest idea of where the prostate is even located, what it does, and what any of the statistics they throw at us actually mean.

The other point Ira makes is that with the conditions you describe, you have plenty of time to make a very deliberate and considered decision. There is no urgency in your case. I would get a second opinion on the biopsy if you haven't done it already, get your PSA tested every three months while you ponder your options, and make lifestyle changes that can help lower your PSA such as eliminating dairy, increasing your exercise, and cutting way back on red meat.

MCinNC
Posts: 32
Joined: Sep 2010

I've still got a lot of research to do, and a lot of decisions to make, but - WOW - your comments are remarkably valuable to someone going through this process, and much appreciated. How you approached the decision making process, what was significant to you, what were the major factors in your case -- really great stuff.

I'm trained as a lawyer and have been working as a judge for many years. I'm accustomed to accumulating facts, analyzing them, factoring in credibility and bias issues, deciding what is important and what isn't, and making decisions. That's basically what I do everyday. But geez, how incredibly complex and difficult this thing is!

I'm gradually picking up the details of all the treatment options. Like Ira mentioned, basically they are all on the table. I'm beginning to understand their comparative effectiveness in cases like mine, and what the likely side effects may be. That's a difficult, but fairly rational process to work through. But then, there is this whole other realm - Kongo mentioned non-technical factors. This semi-mystical, often emotional place where the questions become "What things in life are most important to you?", "How will your decisions affect the ones you love most?", "What sacrifices are you prepared to make?" etc, etc. Big decisions that measure who you are and profoundly affect you and those around you.

I had begun to feel, and become a bit concerned, that after all the rational information gathering and analysis is over, that there is a good chance that my final decisions may be swayed more by a "gut feeling" or "what feels right" or my relationship with a particular doctor that I "liked" or "trusted" the most, as opposed to more objective factors. So, I particularly value hearing how each of you approached your issues.

I'm fairly close to two university cancer centers with lots of resources. So, in addition to my local urologist and the surgeons in his practice, I've met a really great radiation oncologist, a medical oncologist that I would trust completely, and a hot shot surgeon that I really didn't care for at all. I'm scheduled to meet with a robotic specialist in a couple weeks, along with a Dr. at a nearby university CyberKnife center. I may add others, or not, depending on how my thinking evolves. So, I've still got a ways to go before I will be comfortable enough to make any big decisions.

Getting back on the technical side, there are a couple more questions that come to mind:

In some ways, it seems like choosing AS would be one of the most courageous decisions to make for a relatively young person. Ira, I'm wondering if you have a clear set of "triggers" that would prompt you to seek treatment in the future, or whether you will just evaluate things as they come and decide then. I've heard of trials where AS continues with periodic PSAs and biopsies until the Gleason score goes up, or the number of positive cores increase, or the PSA rises at a given rate or to a particular number. Is your particular protocol like that?

Also, I've not yet figured out which treatment I think gives me the "best chance of a cure" as Kongo mentioned. Obviously that would be a good reason to choose a treatment, as would a treatment that lessens the negative side effects that one would be living with. So as to Swing and Kongo, if you felt CK gave you the best chance of a cure, what info or what about CK made you feel that way? And, if you felt CK would have less in the way of long term negative side effects, what were your expectations about side effects when you chose CK? I know the short term has been great, but what do you expect to be dealing with 10 yrs out, or 20 yrs out?

Thanks again.

Mac

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Kongo
Posts: 1167
Joined: Mar 2010

Mac,

Your eloquent post captures the essence of the difficulties in coming to grips with prostate cancer. While advances in medical treatment options have furthered efficacy in treatments in general and given us more to choose from, in many ways these advances have made it more difficult for the patient. It seems absurd to me that the medical community had devolved to the point where the burden of figuring out the best treatment choice for this very complicated disease is now the responsibility of the patient and not the physician experts who have spent years of study, residency, and practice to be able to wear that white coat they don when they meet us. Most men have no idea how to go about making this kind of decision or how to adequately weigh the advantages and disadvantages of any one treatment over the other based on their unique cancer characteristics. After initially receiving the news about having cancer, we are all too often handed a couple of glossy brochures at the doctor’s office and expected to somehow use these to make some kind of decision that will affect the quality and length of our life for what time we have left. I suspect that most men end up doing whatever that first doctor tells them will “cure” their disease because it’s just too hard to go against the doctor. Most of those first physician meetings are with urologist-surgeons and the newly diagnosed patient is led down the path toward RP without understanding the full range of consequences of that choice or that there are even any other viable options.

In my own case, I constructed a matrix where I listed every treatment option I researched across the top horizontal row and along the vertical side I listed all of the factors which I considered important such as likelihood of a “cure,” side effects, availability and convenience, odds of recurrence, recovery time, costs not covered by insurance, rapport with the treating physician, quality of life, and so forth. Once I’d done this I color coded responses in green, yellow, and red and played all sorts of “what if” games by sorting the matrix in different ways. The treatment choices in my matrix were open RP, robotic RP, proton therapy, IMRT, Brachytherapy, cryosurgery, HDR brachytheapy, AS, SBRT Varian , and SBRT CyberKnife. I had looked into HIFU but since it was not FDA approved I decided against it early as it was important to me to find a medical team associated with a treatment choice that would be with me for the long term, not just during a weekend in Mexico or the Bahamas. I did not consider hormone treatment as a stand-alone treatment or as part of a “combo pack” as my research had pretty well led me to conclude that I didn’t need HT in treating the low risk cancer that my numbers strongly suggested.

In the end, the determinant factors that led me to CyberKnife were more intangible and involved quality of life issues in the area of urinary incontinence and maintaining sexual potency. Since there are so many competing studies in this area that frequently offer conflicting conclusions for a whole lot of reasons to numerous to itemize in this post, at the end you sort of have to hit the “I believe button” and go forward. Otherwise you will find yourself in a state of perpetual paralysis by analysis.
I also made a commitment that in conjunction with a treatment choice that I would adjust my diet and lifestyle to let my body have the tools it needed to fight cancer on an ongoing basis and that included eliminating dairy and cutting way back on red meat.

Your question about 20 or more years into the future is really an imponderable. Nothing I am aware of today gives us any guarantees in that area and the men with prostate cancer who survive these long periods of time are mostly listed in anecdotal asides. Since most men are diagnosed in their mid-sixties to early seventies, having meaningful studies about 20 or more year survival rates just don’t exist.

I think it is very important to read the many studies that are out there. Some studies are cherry picked by various treatment advocates to highlight their procedure over another. I learned to read them with a high degree of skepticism and look to see whether or not the conclusions made sense given the overall data of the cohort in question. For example, if a study touts sexual potency after treatment, it ought to describe the age, body mass, general health, and sexual function BEFORE treatment, in other words what is the delta between a before and after condition that could be reasonably correlated to the treatment. With sexual potency this is a tough one because, men frequently lie about it. In any event, that is an example of sorting out what a study is really telling us but you have to go through them anyway.

A CyberKnife study you may wish to peruse can be found at http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf.

It does a pretty good job in summarizing the studies to date. I am part of an ongoing multi-institution trial that, so far at least, closely correlates to the results Dr. Katz achieved at his institution in Florida that had no cases of biochemical recurrence, no significant urinary and rectal complications, and a potency preservation rate of 87%. If you wait for 10 years to see if this really holds true then you would be dealing with 10-year old technology and something else would be competing with it. Sooner or later you have to make a choice.

My CK doctors explained to me that in their experience, men who were free of urinary or potency issues before CK did not have any issues afterward. That is what I expected and that is what I experienced. It is well known that if radiation has an effect on sexual function it shows up two or three years later. That hasn’t been the case in CK studies and in any event, that type of decrease in potency is well treated by drugs such as Viagra.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

One of the things that is more than likely going to happen is that you will do all this research and consult with experts and think you finally have it figured out and something will happen to give you pause.

For example, in my own case the initial PSA at diagnosis was 4.3. Within a week I eliminated dairy and when I had a pre-treatment PSA test three months later it had dropped to 2.8. I immediately thought, whoa…what is going on here? Maybe I don’t need to do anything. My doctors told me that the PSA decline was most likely a result of the dairy elimination and that I still had cancer and hitting it in its earliest stages was the best way to get rid of it. I believed them then and I think I pretty much do now but….I’ve developed an alternate theory I will run by my doctors on the next visit. And that is, my biopsy showed only 1 of 12 cores positive for adenocarcinoma but there was another core on the opposite side of the prostate that showed minor inflammation. Even thought I hadn’t any symptoms I now suspect that the inflammation was a small touch of prostatitis. The antibiotics I took in conjunction with my biopsy could have well knocked out the prostatitis and contributed to the decline in the PSA reading. In other words, maybe I am just another one of the thousands of men who got sucked into overtreatment of an indolent cancer that wasn’t going anywhere. Of course, the drop in my PSA took it back to the level that it was in 2000 when I first started getting PSA tests so I’m pretty sure that the dairy had a lot to do with it.

This is just an example of the types of things that can happen that will cause you to second guess. As a judge, I am sure that you occasionally make ruling that cause you to go through “what if” drills after your decision so perhaps you have learned to live with this. With prostate cancer, you can’t go back and set-aside an earlier decision. You have to live with your choices.

Just something else to keep in mind as you ponder your choices.

Swingshiftworker
Posts: 656
Joined: Mar 2010

As Kongo points out, consideration of the long term effects of radiation treatment is really an imponderable. Frankly, if I live so long -- to 70 or 80, I think I'll have a lot "other" problem, apart from the long term effects of CK treatment to worry about.

I've discussed at length elsewhere in the thread and in others why I feel CK is currently the best available treatment for early stage PCa. Simply, it's the most precise method of treatment with the fewest side effects and with at least as good a possibility of "curing" the cancer as any other method of treatment.

With CK, I was told to expect the possibility of some urinary (inflamation and/or strictures) and/or rectal (bleeding) problems 12-18 months after treatment. This was much less serious that the risks I learned about concerning BT, which can result in much more serious urinary and rectal damage cause by the improper radiation dose calculation and/or placement.

I was also aware of the possibility of secondary cancers suspected to be caused by radiation treatment. For example, radiation treatment for breast cancer is suspected of later causing esophageal and stomach cancer. Colon cancer and bladder cancer are also suspected to be secondary cancer risks following radiation treatment for PCa. However, the method of radiation treatment used in both cases is usually EBRT which is a much less focused method of radiation delivery (than CK) and, as a result, is much more likely to cause collateral tissue damage possibly leading to secondary cancers.

Since CK can deliver radiation much more precisely than any other method of radiation treatment, I am not very concerned about the possibility of acquiring bladder or colon cancer as a result of the CK treatment. Doesn't mean it can't happen, but I don't think it is very likely and am willing to accept that risk, given the probability that the cancer will be in complete remission w/in 2 years, the minimal side effects of the treatment and the potential for further treatment in order to deal with a relapse of the PCa or the development of any other cancers that may develop in the future.

BTW, the potential for relapse or secondary cancers is no different for radiation than it is for surgery. The situation exists in either case. While secondary cancers may somehow be "caused" by radiation treatment, the failure to excise all of the cancer via surgery can allow PCa to migrate and cause cancers elsewhere in the body. So, to me, that risk is a wash -- ie., the same regardless of what method of treatment you choose.

PS: Your Honor, I graduated from Georgetown Law in 1981 and am still licensed, but no longer practice, in DC and CA.

MCinNC
Posts: 32
Joined: Sep 2010

You're just a youngster --- I graduated law school way back in 1980.

Swingshiftworker
Posts: 656
Joined: Mar 2010

I actually went to law school "later" in life. I graduated from Berkeley in 1971 at 20 and spent the time in between collecting other graduate degrees. Ah, the good old days. LOL!!!

hopeful and opt...
Posts: 1357
Joined: Apr 2009

I believe that it is a very good idea to treat at a major medical center....but be cautioned that some are better than other for various specialties, ie robotic surgery, and you may have to travel to a different location for better treatment.......where are you located? (you can mention since some of us may be in your area) ....

During the time that I have posted at this site I recommended active surveillance to some where it was a "no brainer", but other more active treatment was choosen.....there is a gut reaction that many men have to get the CANCER out of their body, and doctors wanting to make a profit on the prostate guide these men to chose their specialty.

"In some ways, it seems like choosing AS would be one of the most courageous decisions to make for a relatively young person. Ira, I'm wondering if you have a clear set of "triggers" that would prompt you to seek treatment in the future, or whether you will just evaluate things as they come and decide then. I've heard of trials where AS continues with periodic PSAs and biopsies until the Gleason score goes up, or the number of positive cores increase, or the PSA rises at a given rate or to a particular number. Is your particular protocol like that"

I am enrolled in an active surveillance at a major cancer center.......I am being closely monitored.....in my case at 67 if I get a gleason 7, I will seek further treatment......My last three dimeinsional guided biopsy where there were 3 targeted cores, based on an MRI, I had zero cancer.....pls read my profile for more information.

Long term , AS is fairly equal with other treatment decisions

MCinNC
Posts: 32
Joined: Sep 2010

I'm in North Carolina - 2 hours drive from Duke (Durham) and UNC (Chapel Hill). Duke has a top ten type of medical center with urology and oncology ranked pretty high. I've met with 4 of their guys. The CK center is at UNC, which has its own cancer center. I'm told that they haven't been doing CK for PC for much more than a year or two, although their use of CK for other conditions goes back a good deal further. I'm going to meet with a couple of their drs in 2 weeks.

hopeful and opt...
Posts: 1357
Joined: Apr 2009

if you choose robotic surgery, number of operations that a doc has done is critical; the majority of these doc have done few, and are still on a learning curve.

CK is a fairly new procedure for the prostate, I think about 5 years or so, swing and kongo are the csn experts......I ain't no expert, but I believe that CK experience with other conditions is not what I would look for.

hopeful and opt...
Posts: 1357
Joined: Apr 2009

I was at the library when I posted to you , my time was cut short, so I am adding to the post now.

Since we have to make a treatment decision based on incomplete information while we are pretty much in a state of stress when we are diagnosed...I believe a partial reason that I post is so I can validate my decision, which I have done to a great degree as I become more knowledgeable or probably comfortable with my decision.

AS Surveillance protocols:

Different docs and men monitor in different ways.

Some , as in the study that I listed in my profile, do a regular PSA , digital and some biopsies.

Some regular pSA's ,non invasive tests, no biopsies.

The protocol that I am participating in consists of a PSA and a battery of blood tests twice a year, an annual MRI using a tesla 3.0 machine (sate of the art) and a three dimensional targeted biopsy. State of art biopsy machine.

Basically an MRI is taken; suspicious lesions are identified, the biopsy which has ultra sound capacity can tatget these lesions, additionally cores are taken thru out the prostate..the three dimensional machine has the ability to go back to the same location in the future which two dimensions do not.

Active treatment decision triggers:

I am closely monitored, by a doc, wo is an expert in this, but basically I believe that the criteria will be more relaxed as I age, I'm thinking that at this time, I do not want to see a seven....I think that the psa is a second to the biopsy.

MCinNC
Posts: 32
Joined: Sep 2010

Ira,

I've seem favorable longevity comparisons of AS vs other treatment options for periods of 5 or 10 years. Have you run across studies comparing these outcomes for longer periods? 15, 20, 25?

I'm 56 and would like to think I'll make it another 25 years or more. I worry that the AS data reflects slow growing PC in older patients that eventually die from causes other than PC. I worry that over a 25 or 30 year period, AS comparisons may not fare as well. And that over that long term, the disease would almost always progress and treatment would almost always be needed.

Generally, do you think that AS is less of a reasonable choice the younger you are?

Thanks.

Mac

hopeful and opt...
Posts: 1357
Joined: Apr 2009

I would like these answers as well...my take

The longest study that I have come across is posted at my profile, 8 years.

I remember reading in one of the prostate cancer newsletters that AS is favorable to other treatment options over a 15 year period.

Very recently Kongo started an AS thread which is very informative.

Monitoring:

It has been shown that one who progresses under AS can do an Active treatment without adverse affects if effectively monitored.

Two tests which I recommend,

MRI with a spectroscopy....will show lesions within the prostate and also extracapular extension(disussed in my profile) Suggest that you get one now no matter what treatment you choose.

Molecular test...Aureon does a molecular test that identifies aggresive tumors, which will progress more rapidly...the test is not very accurate but adds, and Aureon then does , I think a regression analysis with other factor such as age, geason , psa, etc and compares to about 1000 men , about 2/3 which have had a radidal prostectomy, then projects 8 years in the future the likehood of having the prostate cancer progress.

It is very likely that one's cancer will not progress during a lifetime....there had been a study in a city, Iforget the name, but I'm thinking that it starts with a P where autopsies were preformed and and many men died with prostate cancer, not because of it, the amount of cancers was age dependent.

I believe that that age should not be a factor since, one quality of life will be better while on AS, and immediate active treatment options can be taken if the disease progresses without negatively affecting outcome. ...where I am being treated there is a man in his 30ies who is in the same study as I am.

56...why not.

my take as a non medical profession

Klemon
Posts: 26
Joined: Jun 2010

My husband is now 64- a VERY young and VERY active 64, he was a-symptomatic and began seeing an increase in PSA in 2006-2008 from 2.5-4.5 over 2 years, biopsy in 2008, negative- PSA went up---biopsy in 2009---negative-high grade PIN--- PSA went up---now at 8.2, biopsy in 2010 was 1 core postive at 3+3=6. We were told of all of the options and that we were a good candidate for watchful waiting, or surgery.. or radiation, or seeds etc etc. Low amount of cancer, and slow, non-agressive. We decided on the DaVinci surgery for cure rather than risk not getting a cure, and dealing with all the side effects of radiation (we did check the seeds too). Our own primary care physician (not urologist) and both of his brothers had all had DaVinci at Mayo-Rochester by Dr Igor Frank the previous year with excellent results. They treat more prostate cancer in that Dept in Rochester than anywhere on the planet.
We went up there for consult and were told that the biopsy results from home showed pre-cancerous cells, not cancer. Thy recc a saturation biopsy to get at the heart of what was going on. results came back several positive cores on left, middle and right, ranging from 3+3=6, 3+4=7 and 4+4=8! We were very upset- at least I was. How did all the prior biopsies, MRI, and ultrasounds miss it? They say its just that illusive- and the biopsies really are just shots in the dark.... The increase in Gleason score bought us bone and CT scans which were negative, and an early surgery date which included an additional aggressive extended pelvic lymph node dissesction. Surgery was sucessful, he was downgraded to 3+4=7 and all lymph nodes clear. Told it was confined. We are 2 months post op.. total urinary control at 8 days when the catheter came out. At the 4 week mark he was given the green light and no restrictions, Since then.... since he is VERY active, if he has a full bladder and lift something heavy or does sits up..he might leak a drop or two, but not always.. he has never needed pads. Sexual function is returning...not as fast as he would like, but we are able to have intercourse and he can achieve orgasm. He has had some urine leakage just prior to orgasm which they don't always tell you about. :>) but its not a big deal.

Swingshiftworker
Posts: 656
Joined: Mar 2010

Klemon: Congratulations to your husband (and you) for his apparently successful surgery and quick recovery w/o significant urinary or sexual dysfunction. Unfortunately, as a review of the threads on this and other PCa boards will reveal, many men who have surgery -- open or robotic -- are not so lucky.

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