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John and Sue live in British Columbia, Canada. He was 63 when he was diagnosed in October, 2010. His initial PSA was 5.60 ng/ml, his Gleason Score was 7a, and he was staged T1c. His choice of treatment was Non-Invasive (Active Surveillance). Here is his story.

My PSA rose from 4.5 in June 2009 to 5.6 in August. Had biopsy done. Showed cancer in 3 of 6 needles, Gleason score 3+4=7. Got major infection from biopsy. After 6 weeks, infection gone (I think!) but virtually no ejaculate and occasionally blood in ejaculate.

Now January 2012 and still continuing with those problems along with difficulty urinating at night and some urgency. Meantime, have to decide on course of action.

Discouraging to see no treatment appears to provide better long term results than doing nothing at all, although one of the latest studies appears to show some additional lives saved through treatment. [There is indeed a deal of disagreement as to which men ultimately benefit from early therapy. The NCCN Guidelines summarise issues well as a basic guide.]

In any event, I have elected to take more time to make a decision. Thanks for providing this site! The information, especially other men's treatment results, is invaluable.

UPDATED

April 2012

As I explained initially, I had experienced some brutal side effects from the biopsy which was done last October including a lengthy infection. After a two month bout of anti-biotics and with the passage of time, these have abated to the point where I am about 90% back to "normal". (I don't have blood in my ejaculate any more, no more retrograde ejaculate or pain on ejaculation.) I pee a lot better too, although that is still slow at night time. I generally get up once a night now instead of twice before the biopsy, for whatever reason. The biopsy indicated I had a Gleason score 7 (3+4), type T1C.

I have since read hundreds of articles on treatments and studies pertaining to the survival rates relating to treatments. I started with the US Preventive Services Task Force recommendations which came out last October. A draft of that report can be found at:

DRAFT Recommendation Statement

You will also find a link there that leads to the report itself.

This group of 16 professionals is made up mostly of MDs. The bottom line is this sentence:

"The mortality benefits of PSA-based prostate cancer screening through 10 years are small to none, while the harms are moderate to substantial. Therefore, the USPSTF concludes with moderate certainty that PSA-based screening for prostate cancer, as currently utilized and studied in randomized, controlled trials, has no net benefit."

Accordingly, they recommend against PSA testing for all age groups. My recollection is that the report was based on examining 280 studies, reducing those to what they considered 5 good studies involving hundreds of thousands of men going back 10 to 12 years. Of course, this report was strongly attacked by the urologist community. However, none of the objections that I read actually contradicted the numbers or could find fault with the thinking behind the recommendation. Many doctors pointed out the fact that these procedures save lives, as evidenced by the declining death rate from prostate cancer over the past 8 to 10 years. I will talk more about that later, if you want to stay with me that long.

I think it is fair to say that if I had read this report prior to my PSA test, I would not have had the test done, which means I would not have had the biopsy, which means I wouldn't know that I have prostate cancer. By the way, while these studies all have to do with PSA testing, you quickly realize after reading a few articles that it is the effectiveness of treatment that is being tested, and not the effectiveness of the PSA test in detecting cancer.

Since then, I have gone to all of the major studies and read them in detail. I also recently read an excellent and recent article written by a GP, which summarizes the various studies and thoughts on the topic, which can be found at: The PSA test: What's right for you?

Based on this doctor's knowledge and on these massive studies, and the potential horrific side effects of treatment, he has made a decision not to take a PSA test, in spite of the fact his father contracted the desease at an early age.

One of the largest studies, involving some 160,000 men in 8 European countries was just updated. One of the headlines in US newspapers read: "PSA Screening Lowers Prostate Cancer Mortality." It pointed out that the European Study of Screening for Prostate Cancer showed that after a median follow up of 11 years, those in the screening arm had a 21% decreased risk of PCa death relative to controls! (report is in the New England Journal of Medicine) A good summary can be found at:New data fuel debate over prostate cancer screening

I was interested to see the actual numbers relating to that 21% reduced risk of death. Roughly, there were 80,000 men in the screened and the same in the control group. Of the 80,000 men in the screening group, 299 died of pc, as compare to 462 men in the control group. So, out of 80,000 men, there were 162 more deaths than in the group that was getting screened and treated for the greater number of cancers found through screening. Presumably, in the control group, only those with symptoms were treated. In any event, 162 lives saved, through treatment, out of 80,000 (0.2% of the total- that's 1/5 of 1%!) is very unimpressive to me. it is also unimpressive to Dr. Otis Brawley, who is the chief medical officer of the American Cancer Society,who was quoted as saying "there is huge profit in screening and treatment" for pc, event though most studies have failed to show that screening saves lives. Not only did the treatments only save 162 lives from pc death, but it showed zero benefit in terms or lives saved from all causes. In other words, the number who died was the same in both treated and untreated groups.

This study showed that 1410 needed to be screened to prevent a single pc death and 47 men diagnosed with cancer.

In most studies I read, over 40 men needed to be treated to save one life from pc. I saw only one where it was 12 men, but that only applied to younger men, under 65. In other words, for those over 65 the odds of treatment working for you, according to everything I've read, is about 40 to 1!

For a while, I was seriously considering proton radiation treatment, in spite of the $80,000 cost. However, over the past few months, there have been a number of articles which convinced me that proton treatment is no more effective, in terms of life savings or side effects, as any other treatment. I also decided that the studies appeared to show greater bowel problems with proton radiation. Finally, I could not find a single long term independent study on proton therapy for pc anywhere. However, the theory behind it still makes sense to me and I am confused as to why no long term studies exist to prove its benefit.

In an effort to make some sense out all the conflicting information coming at me, I even went to the Treatment Experiences portion of this site. I divided up the Experiences into Surgery, Brachytherapy and Proton treatment. I printed off the 3 sets of pages, marked those who said there were fairly serious sounding side effects and those who said there were none and counted up the totals. In the Brachytherapy group, 54% indicated problems, in surgery, 82% said problems, while in proton therapy 37% indicated problems. I did this because patients and doctors appear to have a different perspective on the seriousness and concern of side effects to treatments, plus I was curious as to how real people felt after treatment, as compared to studies.

My own discussion were with my family doctor, who referred me to a urologist, who referred me to an oncologist at the local hospital. The oncologist was a Brachytherapy specialist, and he highly recommended that I go through that process. He informed me that with the grade of cancer I had the odds were that I had an 85% chance of not dying, and 15% of dying, from pc within 10 years. There was also a 15% chance that my cancer had already spread outside the prostate. We discussed the various studies and the lack of solid information available comparing side effects, and my concerns about the high rate of urinary problems with Brachytherapy. He said if I didn't want Brachytherapy, I should consider surgery. (This, after he had told me that the surgeons in our province do not release statistics about prostotectomy procedures!) I told him that based on what I read, surgery would be the last thing I would do. The conversation ended when I told him I was unwilling to undergo any procedure at this time and would not, until I had access to more positive information on treatments than I had now.

One of the stats that bothered me because it is used by doctors to "prove" that procedures saves lives, is the fact that deaths from cancers appear to have declined very significantly over the past 8 to 10 years. I went to the US Prostate Cancer website (National Center for Healths Statistics) and found that PC deaths for whites had declined by 28% from 1999 to 2007, the latest date for which I could find stats. Specifically, they declined from 29 per 100,000 to 21. However, incidence rates had also declined, by 12%, from 161 to 142 per 100,000. So, in 2007, 14.8% of diagnosed pc cases resulted in death, compared to 18% in 1999. So, if I take 18% of 142 I get 25.5, as compared to actual in 2007 of 21, resulting in net life savings of 4.5 per 161 incidences. That means that 3% more lives were saved of those getting cancer as 8 years earlier. Just goes to show you can make statistics look like whatever you want![One aspect of the statistics that is rarely highlighted is that all reductions are measured from an unexplained mortality peak which arose after the introduction of PSA testing. The percentage of prostate cancer deaths in all male deaths in the US is still the same as it was in 1976 - less than 3%]

Further, in the Journal of the National Cancer Institute, June, 2009, which stated, "Since 1986, an estimated additional 1,305,600 men were diagnosed with prostate cancer, 1,004,800 of whom were definitively treated for the disease. USING THE MOST OPTIMISTIC ASSUMPTION ABOUT THE BENEFIT OF SCREENING -THAT THE ENTIRE DECLINE IN PROSTATE CANCER MORTALITY OBSERVED DURING THIS PERIOD IS ATTRIBUTABLE TO THIS ADDITIONAL DIAGNOSIS-WE ESTIMATED THAT, FOR EACH MAN WHO EXPERIENCED THE PRESUMED BENEFIT, MORE THAN 20 HAD TO BE DIAGNOSED WITH PROSTATE CANCER." The way I translate this to language I can understand is to say that of 20 men diagnosed, about 77% or 15.4 were treated, in order to save one life. Therefore, the odds of a procedure saving a life during that period was 15.4 to 1.

So, it would appear to me that the improved death rates actually confirm, as do the massive studies, that the odds of a procedure saving your/my life are very small indeed! So those are the reasons I have decided to have nothing done for now.

Doing nothing is really hard. They should call it watchful worrying, not watchful waiting. I know I have cancer in half my prostate. I know, if my oncologist's stats are to be believed, it has about a 12% chance of being the aggressive kind. I know that the aggressive kind will kill me through a slow painful death in a very few years. [Not necessarily - the chances of dying of prostate cancer are less than 3%: there is a 97% chance of dying of something else.] A buddy of mine just had the surgery for his PCa because he could simply not bear the thought of the cancer growing in him. Well, I don't like it either. And if the procedures weren't accompanied by potentially dreadful side effects, I wouldn't hesitate. I probably am more hesitant than most because of the crappy side effect I had from the biopsy, so I have a good idea of how easily and quickly things can go sideways. But if a doctor were to tell the pc patient the truth; that the odds of any procedure "curing" you is, at best 15 to one, and the side effects could be horrendous, how many would then take a chance on the procedure? Anyway, that's my story for now.

As a last note, I am not actually doing nothing. I read about something called the Budwig Diet. which is based partially on a no sugar, low fat and mostly vegetarian diet, but also a combination of flaxseed and cottage cheese. [The Budwig Diet is a fairly complex diet that has been simplified in the US to "flaxseed and cottage cheese. There are no good studies showing the eficay of this regimen] I actually have little faith in diets solving serious health issues, but I also ran across information about flaxseed on the Cancer Canada website. It led me to a number of small medical studies which can be found at: Flaxseed supplementation (not dietary fat restriction) reduces prostate cancer proliferation rates in men pre-surgery , which convinced me that aside from the potential benefits of the other factors in the Budwig Diet, flaxseed does kill and slow the rate of pc cell growth. So I am on that diet. As result, or coincidence, my last PSA; was down a bit. I have also reduced my alcohol, sugar, dairy and red meat intake, although I have made no huge changes in eating because I love eating, and the occasional drink and I refuse to be held hostage by the prostate cancer monster.

UPDATED

May 2013

It has been 2.5 years since I was diagnosed. My biggest regret is that I asked for the PSA test in the first place. Why? Because after exhaustive study, I found, discouragingly, that none of the prostate cancer treatments have been proven to work better than any other. Much more disappointing is the fact that treatments provide little, if any, additional benefit to doing nothing, but come with potentially brutal side effects. If you are wondering how I came to these conclusions, you can read my prior comments. More disappointments: doctors can't tell whether you have fast growing p.c. which will kill you pretty quickly, or the slow growing kind which will not likely kill you at all; there appear to be no standardized methods to measure the side affects of the various treatments, therefore making it much more difficult to decide on the best treatment; and, some treatments, such as proton therapy, have a relatively few years for which results are available. Another frustration and difficulty for many people is the realization that your chances, after being diagnosed, are based on statistics and odds!

So, long story short, I have changed my diet and are eating less dairy, fats, red meat and sugar. I take flaxseed and flaxseed oil daily as flaxseed has been shown to slow the growth and even kill p.c. cells in men with p.c. (For the reference, please refer to my comments above.) I have not had my PSA checked for almost two years, for the reason that there is only a tiny chance of curing the p.c. through any medical procedure known today.

So far, so good. My health is good. I play old timers soccer once or twice a week, run and walk regularly, and have a glass or two of wine every day, plus the occasional cigar. I wish there was a proven cure, or even one with half decent odds, but until there is, I intend to enjoy life to the fullest.

UPDATED

June 2014

I was diagnosed almost 3 years ago. Oncologist recommended Brachytherapy or surgery. I did a lot of reading of clinical studies over a 3 month period and learned that

1. There is no way for the doctors to know if the p.c. is slow or fast growing

2. There is no proof that any treatment is better than any other.

3. There are no consistent criteria with respect to judging the side effects of any treatment.

4. There is no proof, especially for those over 65, that any treatment is better than doing nothing at all.

5. there is no proof that diet improves survival rates. (However, an Indian doctor convinced me that I should eliminate or significantly reduce my consumption of red meat, sugar and dairy, which I have done.)

6. The odds of any active treatment helping are a minimum of one out of 16.

7. All treatments have potentially horrific side effects.

I would say the main reasons I chose active surveillance was because the odds of any treatment curing me or slowing the cancer down, were poor and the odds of having very unpleasant side effects were high.

Because there is no proof that any treatment can cure me, I have chosen not to have my PSA tested.

However, since the date of my biopsy, I have steadily lost weight, falling from 152 to about 132 pounds. I have gone for all kinds of tests including a colonography (which I don't recommend!) which showed nothing. Since I can still play soccer twice a week and do my gardening chores without much trouble, and since my weight appears to have now stabilized, this matter appears to be over for now. In any event, the physicians have assured me that because of no other negative factors it is highly unlikely that the weight loss had anything to do with the cancer. My own opinion, based on extensive reading, now is that the antibiotics that I took for the brutal infection that followed the prostate biopsy killed the good bacteria in my bowels and this has somehow affected my ability to gain weight.

I did find a couple of interesting studies relating to flaxseed for p.c. These convinced me that flaxseed does kill cancer cells. So I have been grinding a couple of tablespoonfulls and with a large tablespoonful in a glass of cranberry juice on a daily basis. Did my PSA fall for that reason? Don't know but the studies appear convincing. Of course the small studies were never followed up. I suspect because there is no money in flaxseed? I now question the medical profession on everything.

While I decided not to have any more PSA tests done, one was done inadvertently in testing my blood for the weight loss problem, and it showed my PSA had declined over the one year period from a high of 5.9 to 5.1. This made me feel good. But if it had been up by a point, it would not. However, since no treatment protocol can help me, the bad news would have served only to make me start to worry again. So I do not plan on having any more of these tests done, unless my health starts to fail seriously.

UPDATED

July 2015

It's been 4 years since I was diagnosed with intermediate grade PC. I had insisted on the biopsy as my PSA; level had been quickly increasing from 3.5 to 5.8. The biopsy made me sick as a dog. However it had a positive side effect. I had been having serious issues with prostatitis, including blood in my ejaculate, which a number of antibiotics couldn't cure. After using 3 different antibiotics over a month, to cure the infection from the biopsy, the prostatitis was completely cured!

However, now I knew I had cancer. I did a tremendous amount of research over a four month period and was shocked and disappointed to realize that there is no cure for PC. If you look at all the studies directly, you must come to the same conclusion as I did, because of all the numerous studies done, only one appears to show a slight benefit in terms of any treatment saving lives due to prostate cancer. Specifically, it shows that 12 patients would have to be treated to save one life. The odds are therefore 1 in 12 in the best case scenario. BUT, the study also showed that deaths from all factors were the same for both groups, which is the exact same result from every study. How can that be??

In any event, since no study shows that any p.c. treatment does save lives, I thought why would anyone get one of those crappy, risky procedures done? Most doctors will paint the worst case scenario for you in Canada at least, in order to convince you to undertake one if the regular treatments. But they forget to mention the other numbers, which you have to dig for. For example, buried on the U.S. Cancer Society website is a terrific statistic. It says that if cancer is discovered, unless the cancer had already spread to other organs, the survival rates for p.c. are: 100% are alive after 5 years, 98% after 10 years, and 94% after 15 years. These are great stats, especially when you consider that it is mostly men in their 60s and 70s who would most likely be included in that group.

So, I decided not to proceed with any formal treatment. However, I did find a couple of small studies which related to flaxseed, and which showed that 3 tablespoons of flaxseed taken daily for 21 days, reduced the rate of proliferation of p.c. cells. So I have been doing this for 4 years and so far so good!

UPDATED

August 2016

I spent 3 months researching Prostate cancer treatments after my diagnoses in 2011 and came to the depressing and shocking conclusion that for men aged 65 or more, conventional treatment (any treatment) has the same results as doing nothing.

However, I did find an article on the Prostate Canada website that there were small trials that showed that flaxseed could slow the growth, and kill p.c. cells. And the trials were in men, not test tubes. I found those studies, which confirmed the statements, and decided that taking flaxseed was better than doing nothing, and possibly a lot better.

When I had my Prostate biopsy in 2011, my PSA level was at 5.9. It had shot up to that from 4.5 or so over a 6 month period, thus the reason for the biopsy. A year and a half after I started taking the flaxseed, a test showed that my PSA was down to 5.1. Don't know if it was the flaxseed working or not, but since there don't appear to be better options, I'm still taking it. My frequency of peeing hasn't changed over the past 5 years and my sex life is good, so I think my prostate is doing all right. In fact it seems a lot healthier than prior to my diagnosis.

One last comment. The doctors will always tell you how serious p.c. is, and most will encourage you to get immediate treatment, but will seldom give you any of the good news, such as; most men with p.c. die of other causes, the medium age of death of a man who dies of p.c is 80 (yes, 80!), half of men aged 65 are estimated to have p.c., the survival rate from p.c., (unless it had already spread when first discovered) is 100% after 5 years, and 92% after 10 years. In other words, it's a hell of a lot better, in the vast majority of cases, than say pancreatic or lung cancer.

Send me an email if you would like more info on the flaxseed treatment.

UPDATED

April 2017

My PSA was 5.4 in 2011, and is now at 10.5 I tried flaxseed therapy before. With the increased PSA I intend to try high dose liquid Vitamin C therapy. The reason I will not try conventional therapy is because they do not work. The US Preventive Services Task Force website summarized the situation recently very succinctly on the chart below. It is discouraging, because it confirms that there is essentially no cure, but it is easy to understand. It's an educated place to start if you've just been diagnosed.


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