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Active surveillance with diet/lifestyle changes in a new Gleason 7?
A week ago I received the diagnosis of PC and am amazed at how much information and support is out there. It definitely softens the blow. I've been doing some hard thinking and would greatly value feedback on the way I'm thinking about treatment.
Basic stats: 62 y.o. in decent health. psa 6.9, dre benign, Stage T1c, Gleason 3+4, 3/10 samples have cancer, all on the right side. In 2 about 1/2 of the sample is involved (6 and 9 mm). No evidence of extraprostate extension and remaining cores are benign. I've been having some minor, but definite symptoms--frequency/urgency increase, discomfort at end of ejaculation and at night voiding can be difficult.
The urologist recommends radical prostatectomy. Brachytherapy would have a similar cure rate. I will be seeing a rad'n oncologist for opinion.
I would like to try active surveillance for 6 months with intensive diet/lifestyle changes (something like the Ornish method --see J. Urol, 2005,174, 1065-9). But, it seems that this approach is pretty low on the treatment totem pole for a G7 with my cancer volume.
I've done a G7 search on this site. About 3% of G7s have tried it. Are there studies? Does it make sense to do this given my age and probably another 20 to 30 years to go? Does it make sense to get the slides reviewed by someone else? What is the likely outcome if I don't treat? What's the probability of death from the cancer and when? Data on that?
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
G’day Joe,
Welcome to the club you never wanted to join and congratulations on taking the path you have to gain information before making your decision.
In answer to your specific questions:
1. I've done a G7 search on this site. About 3% of G7s have tried itActive Surveillance. Are there studies? The 3% is probably representative of the number of men who choose AS in the general PCa population. It is not a popular choice. There are at least two AS studies that include GS 7 men. A summary of the important studies and their criteria are here ACTIVE SURVEILLANCE CRITERIA I don’t have links to the latest reports on the studies but I know both the Choo and Hardie studies have had reports in the last 18 months or so. I’m about to close down for the night, but I’ll have a look to see what I’ve got tomorrow. In the interim you might find this piece of some interest: ACTIVE SURVEILLANCE FOR FAVORABLE RISK PROSTATE CANCER:What Are The Results, and How Safe Is It?
2. Does it make sense to do this given my age and probably another 20 to 30 years to go? Yes, in my opinion (but I’m biased because Active Surveillance was my choice. ) The life expectancy tables used by NCCN (National Comprehensive Cancer Network® a range of 10 to 30 years for a man of 60 with a median of 20 years. Their latest guidelines (published in January this year are available as a download GUIDELINES does not recommend AS for a man with your diagnosis unless his life expectancy is less than 10 years. If your GS was 6 the life expectancy requirement goes out to 20 years – see below.
3. Does it make sense to get the slides reviewed by someone else? Everyone should have their slides reviewed by the most experienced pathologist available – some suggestions are here RECOGNISED EXPERT PATHOLOGISTS. I have just updated ANDREW SIKES’ story which demonstrate clearly the value of an expert opinion – there are others on the site in the AS section.
4. What is the likely outcome if I don't treat? No one can answer that question. You can be guided by the broad statistics available, but, as an old hand told me soon after I was diagnosed thirteen plus years ago The Golden Rule of Prostate Cancer is This: There are No Rules. I wrote a piece THE ELEPHANT IN THE ROOM which you might find helpful in this connection.
5. What's the probability of death from the cancer and when? Data on that? Very broadly speaking, the median age for death is 80 years of age in the US, where the data is most easily accessible. Other countries have very similar patterns. The latest figures for Cancer in the US are here CANCER STATISTICS 2009 . If you go to TABLE 10 you will see the age distribution while TABLE 9 demonstrates that PCa cancer deaths account for less than 3% of all male deaths and come in at number 7 in the overall causes of death – a little ahead of suicide and influenze but about a third of accidental death (mainly motor accidents). You may be one of a minority of men who wonders, as he puts his key inot the ignition of his car whether he will get to his destination, but most men accept that (greater) risk with a degree of equanimity.
At all ages the chances of death from PCa are far, far less than the chances of death from other causes. Once I grasped those data, I went on my way and still do.
Just one thing more. You say I would like to try active surveillance for 6 months with intensive diet/lifestyle changes (something like the Ornish method --see J. Urol, 2005,174, 1065-9). But, it seems that this approach is pretty low on the treatment totem pole for a G7 with my cancer volume. You may well find that your PSA will reduce if you take this line, but there is no good evidence that this will be accompanied by a retreat of the prostate cancer. And of course the supreme irony is that the fitter you get, and the better you eat and the more care you take of yourself, you will reduce the chances of dying from the major cause of male deaths – heart failure – and correspondingly increase your chances of dying from PCa.
Good luck whatever your choice.
Prostate men need enlightening, not frightening
Terry Herbert in Australia - diagnosed in 1996 and still going strong
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Terry,
I don't think this comment is true:
"At all ages the chances of death from PCa are far, far less than the chances of death from other causes. Once I grasped those data, I went on my way and still do."
Once you are diagnosed with PC you are in a group that has 1 in 6 men dying from PC. Given that very few men with GS 6 die from PC then someone with GS 7 and a long expected life would probably be in a group of men where 1 in 2 will die from it. Conversley men with GS 6 and a life expectancy of 12 years seldom would die of PC no matter what they did.
We should probably get these statistics figured out (I don't claim I know what they are for sure) since they are quite important to the decision making process.
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Hi Terry,
It will take some time to work through your very helpful and detailed response. And to read and make sense of the papers you refer to. I have been working through Klotz's papers and am thinking of paying a visit to Toronto to consult with him.
How do I do all this while working? I need a couple of assistants plus a dietitian.
The main response that comes to mind now is that I'm not that worried about my expiration in x years(I'm in denial obviously). I just don't want it to be a prolonged and painful affair. When I told my urologist I was considering A.S., he said that I would look back and wish I had opted for treatment now! Scary huh!
That's it for now... more to come. Oh, here's a reference you and others might be interested in.
It's one of the few papers that evaluates GS7s who were initially "managed expectantly".
Roderick, C.N. et al, BJU Intl, 2009, 103, 1472-7
Thanks for you feedback and for this site, the resources on it and your work to make it happen.
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Frank,
You say Once you are diagnosed with PC you are in a group that has 1 in 6 men dying from PC.
I have to ask: Where did you get that figure from? I can't recall any publication coming up with anything close to that. There are many published studies that show disease specific mortality rates as 5% (1 in 20) at ten years or even less than 10% (1 in 10) at twenty years but 1 in 6???
There was a publication recently (probably the last year) which estimated that there were over one million men living in the US who had been diagnosed with PCa. As you would know, I am sure, the number who probably have PCa but are undiagnosed because they have no symptoms, low PSAs or haven't had a test is likely to be very much higher than that.
If 30,000 of those million men die from PCa, that doesn't give you a ratio of 1 in 6.
Joe,
Thanks for the link to what looks like a very interesting paper but I feel that anyone else who wants to download it should know it is a very big file - about 8MB and 233 pages.
I don't think you are in denial about not being too worrried about the fact of dying, but being more worried about the process of dying. I think that is true for many people, which is why I tried to focus on the issue in The Elephant piece. There are some very bad deaths associated with PCa. Anyone who denies that does not know the facts, BUT...they are in the minority of a disease that kills a minority of men.
I have always stressed, and I say it again, that we each of us have to make our decisions in a way that we are comfortable with according to how we have lived our lives, according to our paradigm. So for many men early surgery is very important - they just want 'to get it out' and are less worried about the other outcomes. Some men can't stand the thought of an invasive treatment like surgery and opt for the less invasive radiation therapies.
And so it goes. No decision is 'right' for everyone, no decision is 'wrong'for everyone, so it is important to respect all decisions. What I do think is vitally important is that everyone should have a clear understanding of the issues they face before they make a decision that is irrevocable and will affect various issues in their lives.
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Terry, Frank,
In response to the question about what percentage of men will die from prostate cancer, I'll offer the following:
The American Cancer Society's publication of Cancer Facts and Figures 2009 has data pertaining to that. They estimate that in 2009 there will be 192,280 new cases of prostate cancer diagnosed and 27,360 men will die of prostate cancer in 2009. The ratio there is one death to 7 new cases. If the numbers were steady over the years, then the 1 in 7 ratio would be accurate for our use. So the true ratio will deviate from that, but probably not a lot.
Terry, you cited an estimate of 1 million people living with diagnosed PCa currently. And you noted that if 30,000 of the million die from PCa then the ratio is very much smaller. But I suspect that you got the 30,000 from the number that will die EACH YEAR, so that is not the proper number to use for a comparison against the one million.
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Bill,
I think we are getting close to the right ratio. You can improve the accuracy slightly by taking into account the median time to death from PC (I think about 12 years) and then go back that many years to see how many men were diagnosed that year (1998). Probably end up at between the 1 in 5.33 and 7 number.
When I look up the SEER.Cancer.gov site it does seem to be closer to 1 in 6 will die of PC that are diagnosed with it.
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
I don’t think we’ll get anywhere with this kind of discussion which goes on with the blind leading the nearsighted (none of us has any qualifications in statistics as far as I know – I certainly don’t!!) in a very complex subject.
What about this – using round figures and assuming diagnosis and death occur in the same year with no significant change in either number - as this is illustrative only:
Year 1: 192,000 men diagnosed: 27,000 men die – 1 man in 7: 165,000 men do not die
Year2 : 357,000 men with PCa (165,000 left alive from year one plus 192,000 newly diagnosed): 27,000 men die – 1 man in 13: 330,000 men still alive
Year 3: 522,000 men with PCa (330,000 left alive from years 1 and 2 plus 192,000 newly diagnosed): 27,000 men die – 1 man in 19: 495,000 men still left alive
Well, you get the picture….
Of course the men who do not die of prostate cancer do not live forever, so each year the number of men at risk will be less than the number of men who did not die from PCa.
Another PCa activist produced a table to try to illustrate the relative danger of PCa compared to other cancers by comparing the number of cases each year compared to the number of deaths each year. This is not, of course anything but illustrative, but it does show to a degree that there are many more dangerous cancers than PCa – it is here DEATHS TO DIAGNOSIS RATIOS
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Terry,
I think we should probably get this figured out. There is a big difference between thinking you have a 3% chance of dying from PC or a 50% chance. One of the people in my PC Support Group is a professor emeritus of mathematics and I know a Professor of Statistics. I'll see what each number they come up with independently.
In your previous post you are summing the diagnosed cases but not the deaths. If you sum up both sets of numbers then you are back to 1 in 7.
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Year 1: 192,000 men diagnosed: 27,000 men die – 1 man in 7: 165,000 men do not die
Year2 : 357,000 men with PCa (165,000 left alive from year one plus 192,000 newly diagnosed): 27,000 men die – 1 man in 13: 330,000 men still alive
Year 3: 522,000 men with PCa (330,000 left alive from years 1 and 2 plus 192,000 newly diagnosed): 27,000 men die – 1 man in 19: 495,000 men still left alive
It will be interesting to see what your statiscal man comes up with Frank.
My point is that, in my example, if you are diagnosed you are one of 522,000 men with PCa. 27,000 of you will die - that's 1 in 19 chance. From your (statistical) point of view, the previous years' deaths are immaterial and don't accumulate. The living survivors do accumulate however.
Anyhow, as I say I will be very interested to see the correct answer.
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Having read this thread through I now have a head-ache. I had to create a simple excel spreadsheet and reason through this and I come up with 14% (or 1/7). Here's my thinking:
In year 1, 27,000 die out of 192,000 diagnosed (14%)
In year 2, another 27,000 die and another 192,000 are diagnosed. So, after 2 years, 54,000 have died out of 384,000 diagnosed. 54000/384000 is still 14%.
In year 3, another 27,000 die and another 192,000 are diagnosed. So, after 3 years, 81,000 have died and 576000 have been diagnosed. 81000/576000 is still 14%.
From re-reading the arguments posted, it seems my reasoning is agreeing with Frank. I'm looking at cumulative deaths vs cumulative diagnoses. Logically, that would seem the only way to do this.
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Terry,
This is how I come up with the 1 in 6 number but I could be wrong:
I think you use the number of 3% of men die from PC(3 in 100). I've always been told that 16% of men (16 in 100) will get diagnosed with PC. Therefore of one hundred men 3 out 16, about 1 in 5.33, men diagnosed will die of PC assuming no one has been declared to have died of PC that hasn't already been diagnosed with it.
The 1 million is a cumulative number and the 30,000 is a yearly number so they can't be compared in a meaningful way.
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Hi Joe. I'm 61 and live near Toronto. I had my prostate removed painlessly a couple of years ago. I was diagnosed as a Gleason 6 but was confirmed to my disappointment as a 7 by the pathology report after my surgery. I believe that higher pathology reorts are not uncommon.
I have heard of Klotz as a member at my golf course was successfully operated on by him 4 years ago and I know another chap who was on watch and wait with Klotz for I think 5 or 6 years before finally being advised to be operated on.
I heard a Radiologist speak recently who said that there are newer improved methods for doing the Brachy that give you the same odds as removal. That's kind of neat.
I think personally that a Gleason 6 is fine for watchful waiting but a Gleason 7 may invite some extra attention. I hope your hockey team wins the Stanley Cup for Canada.
Bobbyboy
Re: Active surveillance with diet/lifestyle changes in a new Gleason 7?
Hi Bobbyboy,
It's been a month since I made my post initially to this list and I've just checked in now because I thought the discussion forum was closed. Thanks for your email.
I completely agree that GS 7 requires extra attention and that a fair number of pathology reports of the removed prostate will be different than the biopsy, usually more volume and upgrading. So, I'm cautious, but also feel I have a couple more months to make a decision. That's what they're telling me. I've done a fair amount over the month, medical consults, bone scan, 2nd opinion on pathology, all of which have been sometimes conflicting and nerve wracking, but mostly illuminating. I've been on a progressive change in diet so that over the past few weeks, completely vegan, low fat. PSA has gone down from 6.9 to 5.3 form mid-Jan to mid-Apr. Not fooling myself that this represents underlying tumor change, however. Still, better down than up! I am getting another urological opinion here and planning to consult with Klotz as well. Then put it all together. 90% probability that by June I will be under the knife. But, I want to rule out possible, less invasive possibilities first. And, that's the course. In the meantime, feeling fine, most of the time. Talking to people, support groups and trying my darndest to use this situation to focus my priorities in life and learn about what's important- even enrich(Strum, p 12).
I'm interested in your painless surgery. Where? Who?
