Prostate Cancer Survivors






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Interesting article

I was doing a google search today and ran into this article on prostate cancer screening. After reading it I thought I'd put a link and a fairly large quote. The quote is from the second page. I think people just starting their search might be helped by this news, or at least I would have been. And the nice thing about this article is it's very recent.

The Stranger

Does prostate screening make sense for you

By Perspective Dr. Steven Woloshin and Dr. Lisa M. Schwartz
September 29, 2008


How can he judge this risk? Intuition tells him the risk must be big, given the commonly reported statistic: "220,000 cases diagnosed last year." But this statistic is deceptive because screening itself inflates the number of cases because of unnecessary diagnosis.

The result, ironically, is a self-reinforcing cycle: an inflated sense of risk leads more men to get screened; as more cases are detected, the risk looks bigger.

A better gauge of the true threat from prostate cancer is the chance of dying from it. But the most familiar statistic - 28,000 prostate cancer deaths last year - hides critical detail: the risk of prostate cancer death changes dramatically with age. That number also lacks perspective: other causes of death rise even faster with age. Without age-specific statistics and perspective, many men are probably left with an exaggerated sense of risk.

Our research shows that for younger men, there isn't much prostate risk to reduce. For the average 50-year-old, the chance of dying of prostate cancer in the next 10 years is 1 out of 1,000. Another way to say this is that, over the next 10 years, 999 out of 1,000 will not die from prostate cancer. For perspective, the risk of dying in an accident over this time is five times greater.

Risk increases with age, but does not reach 10 out of 1,000 until age 70. Some may feel that this amount of risk is insufficient to justify the potential harms of screening; others may feel that the risk is big enough. Men need to decide for themselves.

The risk to older men is indeed greater; by age 75, the 10-year risk of prostate cancer death approaches 20 in 1,000. But again, this number should be put in perspective. For men who never smoked, the chance of heart attack death is seven times greater than the chance of prostate cancer death. For current smokers, the chance of dying from either a heart attack, lung disease, or lung cancer is 20 times greater than that of prostate cancer.

Our point is not to minimize the real suffering caused by prostate cancer. It can be a terrible, fatal disease. Rather, it is that prostate screening has been heavily marketed to the public for years in ways that have exaggerated the risk of cancer and the benefit and safety of screening.

Re: Interesting article

this is totally wrong. prostate cancer kills young men as it killed my husband on July 14 of 2008. his cancer was diagnosed 10 years ago was confined to the prostate only surgery done cancer was gone for seven years then it came back and killed him . This cancer is very aggressive in young men it is not indolent like older men , this cancer spreads and kills fast just like breast cancer on top of few treatment options for it. My husband was very healthy and all his organs shot down and died from his horrible disease. Medicine is idle to stop this disease from killing people . This disease is still in the dark ages of medicine sadly. Recurrent prostate cancer after initial treatment is deadly .

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I'm so sorry to hear about your husband, prostate cancer can definitely be fatal and I know news like this would be terrible to hear after the battle you talked about. Would you mind sharing your husband's age when he was diagnosed? It's horrible when they say the cancer was confined to the prostate but returns after so long. I also posted a link a while back talking about how often cancer returns after surgery, so I'm researching both sides of it.

The Stranger

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My husband was 44 years old when he was diagnozed ten years ago , July 1998 when his psa was detected for the first time because his physician's father died of prostate cancer so he tests all his patients no matter what their age was. Psa was 4 and Gleson score was 3+4 = 7 confied to the prostate as the pathology report came after surgery and his psa was undetected for seven years his bone scan in 2005 was negative even then in 2007 was metastesized to the bones. This is the story . The oncologist said that it does come back to everybody whatever was believed in 1998 has changed now even Gleason score of 6 in 1998 was left untreated as we were told then but now it believed that 6,7,8,9 are all the same.

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I am terribly sorry for your loss. I congratulate you on your courage to express your views regarding screening. Thank you for sharing your opinion with us.

I was diagnosed too late. My PCa has already spread to my bones and is very aggressive. I have a younger brother and i told him to get at least yearly PSA. This stupid disease is very deadly and if not caught early it will kill you in a painful horrible death.

So, I say screen, early and often.

Steve b

Re: Interesting article

This lengthy quote essentially downplays the risk to life of prostate cancer. Giving statistics of the likelihood of dying from it. However, it also seems to me that the basis for the statistics is largely a population which is currently opting for treatment for the cancer. If the implication of the article is that less testing and less treatment might be appropriate, then we'd like to know how bad the statistics would be if the population were not getting tested and treated. We can't know that now and we'd be unlikely to get a fair trial. Could we ask half of a large sample of men to agree to never get testing or treatment for prostate cancer? I think not, and that reinforces my sense of disagreement here.

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The only reason I posted that information is to give hope to people just starting their research on the subject. I've seen similar articles several times including an interview with Stanford's Dr. Thomas Stamey that quotes very low death rates from PCa. That interview is from 2004 though, but still contains good information to me, after all Dr. Stamey is often called the father of PSA testing.

I'm doing research on both sides and when something seems worthy of posting I put it here. Like I mentioned to Lilian I recently posted a link that shows PCa returns very often after treatment.

I think the rule I've seen here several times is true, there are no rules. This disease is all over the place. One Doctor I read an article by simply said that normally you live with PCa until you die of something else, but for the few that get the aggressive kind it hardly matters what treatment you have, it gets you.

The Stranger

Review Link (requires free login)

End of an Era for PSA Screening: A Newsmaker Interview With Thomas Stamey, MD

Dr. Stamey Quote

So I think that men need to realize that prostate cancer is something that we all get if we live long enough. But it's very important that when you say that, instead of scaring the hell out of the man, you follow it with the fact that the death rate as recorded by the National Cancer Institute from prostate cancer in the United States is 226 per 100,000 men over the age of 65. The bottom line is that prostate cancer is ubiquitous — we all get it, and it goes up with increasing age — but at the end of the road, the death rate of 226 per 100,000 men over the age of 65 is a pretty small death rate. Now a part of that, of course, is that when men get to be 60, the competing causes of death are huge — strokes, accidents, and other causes.

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This looks and feels like the start of an argument about the benefits of screening. After spending more than ten years on Forums like this I can tell you the one certainty about such arguments – they tend to generate a good deal of heat but are never resolved. The reason for that is simple – there is simply no data available to demonstrate whether screening is beneficial or not.

What has been agreed over the years between supporters and those who may be considered as being opposed to screening is

1. there is a difference between screening a population and using available tests, such as PSA (flawed though they are) in making a diagnosis

2. Screening a population for any disease leads to a degree of over-diagnosis and over-treatment. This is as true for prostate cancer as it is for other diseases but it is simply not possible to establish the degree of unnecessary treatment – current estimates are in a very wide range of between 25% and 80% - say 50,000 and 160,000 men annually in the US

3. The ‘dangers’ associated with over-diagnosis and over-treatment arising from screening can be lessened by providing better and more accurate information to both doctors and their patients

By all means continue the discussion if you will, but please bear in mind that people holding different views from you are not necessarily insane, so keep exchanges polite, please.

Turning to Liliana’s post, I’d like to say firstly how sorry I was to read of her husband’s death at a young age, but I feel it is necessary to correct some of her statements which are simply not so.

A. She says This cancer is very aggressive in young men it is not indolent like older men… There is not evidence that the disease is more aggressive in younger men than in older men. Prior to PSA testing, any PCa diagnosed in a younger man was an aggressive variety of the disease, discovered by DRE; since the advent of PSA testing and the soaring number of younger men diagnosed the proportion of aggressive disease in younger men has fallen. Certainly younger men can have the aggressive variant and they can die fro the disease – at least two of our members fall into that category - PAS GRECH and ALAN BACON both died at a tragically young age. BUT there are many more young men who survive the disease than die from it.

B. She says Recurrent prostate cancer after initial treatment is deadly. Again this statement is only partly correct. Sadly in some cases, especially if the disease is an aggressive one, no treatment can stop the final progress of the disease, but for the majority of men, recurrence is not necessarily fatal in the short term. Available statistics show that the chances of a man dying from prostate cancer is less than 5% in the ten years after diagnosis. Fatalities from the disease still occur overwhelmingly in older men – the median age for PCa death in the US is 83 – that is to say, half the men who die from the disease are older than 83 years of age. About 90% of the deaths occur in men over 70 years of age.

As the article quoted by The Stranger says Our [my] point is not to minimize the real suffering caused by prostate cancer. It can be a terrible, fatal disease. It is just to reduce some of the unnecessary fear for the majority of men.

Terry in Australia

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Thanks for your input, it always contains both sides of a tall fence. Hopefully this is not the start of an argument about screening, at least that was not my intention and there will never be any heat from me. I will simply quit posting before doing that, that is not my style. And to make sure that doesn't happen, this is my last post in this thread.

The Stranger

Re: Interesting article

Terry, your caution about tone here is appreciated.
I think there is a lot of respect shown to all those who post and no danger of heated discussion.

I got diagnosed 18 months ago and got into learning as fast as I could and have been attuned to this site for over a year now. It's all good stuff. Still it seems that my basic view is little changed from my initial research, so maybe I should just be clear on it.

I think prostate cancer diagnosis lands men into three rough groupings. One is very early and highly curable. One is not so early but still possibly curable. And the third is too late to expect a cure, but treatable. By cure I mean effectively eliminating the cancer.

I landed in the middle group and got the appropriate treatment and there is a good chance I am cured but no certainty at all. In that group one does need some speed of early action so that one's cure chance does not decline substantially while waiting.

For the very early detection group I think Terry speaks accurately about considering watchful waiting, and perhaps lifestyle changes to enhance one's own ability to stay healthy, notwithstanding the diagnosis of a very small amount of cancer. Not rushing to surgery or radiation treatment.

For the third group the ADT therapy seems about standard and many contributors here talk about it. I have no knowledge of that or all the other related issues that are well discussed on this site.

Of course the above groupings aren't exact, and there are surprises both good and bad to one who might appear to be in a particular group. But I think they are appropriate. And getting back to the testing for PSA, I think most will want it because we need information about our health, and timely information. Certainly waiting for symptoms of prostate cancer to appear via DRE or otherwise is not smart. Because the chance of cure becomes much reduced. That was the case before PSA testing became generally available.

I don't know whether there is much disagreement about what I write here. I do know that this site provides value in at least two ways, one being information and the other being support and compassion. And everyone here contributes in one or both ways.

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If doctors are going to treat prostate cancer in young men by going to statistics then ultimately they will fail. Prostate cancer in young men can kill them in four years between time of diagnosis until death if left untreated as our urologist told my husband in 1998. There are one treatment option aside from surgery, which is hormone therapy , which is of no avail . Whereas breast cancer has many treatment options where women now survive breast cancer first time , recurrent and so on. FDA has approved only taxotere for prostate cancer in 2004 , and taxotere does not work in prostate cancer , it puts a person in remission for six months that is if there is response and extend the lives of others for two more months. After surgery it is your luck and if you get cancer once then your body will make it again so if you want to fight then fight and do not be afraid because fear can kill humans . Fight as if your are going to live for ever. I wish all of the men on this website and their wives start a campaign to have more funding for this disease just like breast cancer, to hope for hormone therapy to work and green beans and herbs and chinese tea . We are middle easterns we cook everything with tomato sauce we eat tomatoes and lycopene as it is called nowadays like there is no tomorrow and my husband got prostate cancer. We eat greens and grass like sheep and still prostate cancer came. This disease need a bigger fight.
most of the men on this web sight are newly diagnosed look at those who died the age of diagnosis and the age of death. They were young and their story is similar to my husband , I have been reading all the stories here trying to understand what went wrong . I realized that those who died were young when they had it and according to the oncologists he was young when it came back and it comes back,there is no cure because as they said " even it is confined when we diagnose but by that time some minute cells already travelled to other parts of the body and sat there and was looking for the right time to attack again".

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I told Terry when I replied to him that I wasn't going to post in this thread again but I wanted to thank you for the information you shared about your husband and your eating habits. That's another area I've been researching, what can I eat to help myself. But it seems the more I read the more I start to believe that what we eat may help some but it surely doesn't help everyone and because of that the diet I started on has slipped.

Just a thought. I don't know if you've written out your husband's story but if you have it seems to me to be something that should be added to this site.

Again. I'm sorry to hear about the tragic death of your husband and I'm sorry my post about screening came as you were doing your research on this site. My research is because of the fear I have about myself and I share both sides of what I find from time to time. I'll repost one line from another thread I started a while back about PCa Treatment.

Often the cancer recurs -- 35% require retreatment within 5 years and 75% within 10 years.

That quote scared me a lot since I was just starting down this path about that time, but it certainly seems to fit what you're saying.

The Stranger

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My experience with this disease is that no one can make any definitive statement about it. There are simply too many uncertainties in the way in which the disease is diagnosed and treated and in the outcomes. It is for this reason that I think it important to respond to some of the things you say here.

1. You say There are one treatment option aside from surgery, which is hormone therapy , which is of no avail . ADT (Androgen Deprivation Therapy) which you refer to as hormone therapy is not ‘of no avail’ but is a very useful method of managing some varieties of the disease and can be used effectively for many years, even for men with aggressive diseases – read the story of TRUEMAN SEAMANS who had a PSA of over four thousand when he was diagnosed nearly ten years ago in 1999. Men who are diagnosed have more than the two choices of treatment you mentioned: there are several variations of radiation therapy and also cryotherapy, with HIFU being available in many countries and becoming available in the US at some time in the future.

2. You say FDA has approved only taxotere for prostate cancer in 2004 , and taxotere does not work in prostate cancer , it puts a person in remission for six months that is if there is response and extend the lives of others for two more months. I have no idea where you got this information, but the experience of men who have used Taxotere as well as numerous studies on the drug show a very different picture.

3. You say ….most of the men on this web sight are newly diagnosed look at those who died the age of diagnosis and the age of death. I am not sure what you mean by ‘newly diagnosed’ , but it is certainly true that about 85% of the men who have shared their stories were diagnosed in the last four years – that is because the site has been growing quite rapidly in that period. But on the other hand 6% of the stories relate to men (33 of them) who were diagnosed over ten years ago most of whom are still alive and well. Of the men in this group who have died (4 men) one committed suicide, one died of a brain tumour unrelated to his PCa sixteen years after diagnosis at the age of 84, one died from the disease and one probably died from the disease. So even based on this very small sample of men, there are many more men alive after ten years than those who have passed on. Three of the men were diagnosed in 1991 – almost 18 years ago.

The term ‘young’ can mean different things to different people. I was said to be ‘young’ when I was diagnosed at the age of 54 in 1996, although of course I was not as young as your husband. I am certainly still alive in my thirteenth year and hope to be here for many more. But there are three men, diagnosed in their forties in this group who still updated their stories last year. They are

DOUG ADAM diagnosed in 1991 with a Gleason Score of 10 at the age of 48:

GREG NACKERS diagnosed in 1997 at the age of 41

GARY AMATO diagnosed in 1996 at age 42 with a T2b staging

We all feel for you, Liliana in the sad loss of your partner, but it is important when trying to help the people who come to this site for information, to try to keep the information as factual as possible and not to let our own hurt or fear influence what we tell them, especially the newly diagnosed.

All the best

Terry in Australia

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Hi Terry
My information about prostate cancer is from the oncologists and radiatiologistsat UCLA center for oncology ( Los Angeles California) . Prostate cancer treatment options are three:
Surgery , radiation and hormone therapy.
All of us know this peiece of information. As for recurrence treatment options are very limited as you all know contrary to breast cancer for example.
There is not enough data on this disease like the rest of cancers .
There is not enough studies done or clinical trials.
My husband's treating oncologist is the top in the western hemesphere in the united states in prostate cancer and he is a researcher and so on . He told me we do not have a lot of options. First line hormone therapy kept my husband's cancer under control for six months his psa went down drastically after the first two weeks of casodex, then the cancer stopped responding and became hormone refractory , second line hormone therapy did not work either nor chemotherapy, what works for old men does not work for young men according to our oncologist he said I see young men die from this disease and all the old men survive,why we do not know.
If you have information that we do not know about please tell us, enlighten us
The top researcher of the country does not have an answer for it.

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Even if your statement reegarding treatment failure is current and correct, there is a tremendous difference between so called "biochemical treatment failure" which is to say a rising PSA and the treatment failure that results in death. Ask DOUG ADAM or any of the other 'old hands' who have had secondary treatment and are still living their lives.

All the best

Terry Herbert

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The statement was from an older study and of course you're right about recurrence normally being treatable. My intent was to show Lilian I had been researching both sides of the PCa battle and share that point with her because it seemed relevant to her husbands story. I'm stretching my memory here but I think that statement was from a 1998 study, which just happens to be when Lilian's husband was diagnosed.

I think the term pussycat and tiger is apporiate to PCa. To me the problem is your gleason score does not reflect those terms sometimes. If you have a Tiger you're in trouble no matter what your gleason score is, as show here by Lilian's husbands Gleason 3+4 being so aggressive. Of course I know anytime there's an element of gleason 4 the landscape changes.

The Stranger

Re: Interesting article

Aloha BillG & company,
Interesting way to identify the 3 groups of PC men, rather obvious ... but interesting. My last visit with the oncologist included "what happens when it comes back". He responded that we would use another form of ADT and that my psa would be the indicator. I replied, "But I do not want to go through that again". He shrugged his shoulders and continued on out of the room. So, when you got it bad, they throw everything ya got at it the first time and it comes back your choices are very slim.
So, I also fall into the second group, but I fear that I will also enter the third group. No way do I want to make that treatment decision.
Once diagnosed, this discussion becomes mute, you are screened the rest of your life.
Very difficult to be upbeat about this.

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I am in the same boat. After surgery and ADT/radiation I asked my oncologist "What if it comes back?" He also said "More ADT". I do not want to go through that again. I was miserable and could barely function. Are there any other options for our situation?

Paul A. RI, USA

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My question is of 266 individuals per 100 thousand, how many men died of "cancer" of which the original cause of death was never determined because they avoided screening or physicians of which many men in the above 60 age group do, or an autopsey was never performed to determine the real cause of death. Case in point a close friend of mine died last month of PCa in Washington, D.C. at a prominent hospital and they listed the cause of death as kidney, bone and brain cancer all of which originated 13 years ago as prostate cancer. Controlled studies are one thing however when you go country or world wide, well it then is anyone's best guess.

Another thing that bugs the hell out of me is when someone says you'll die of something else before PCa.
My Gleason was a 9 and the surgeon, on my initial visit to him to discuss my options sure as hell didn't say that, nor has my oncologist after completing radiation. As a matter of fact I have never had anyone with PCa tell me that which has been affected with the disease, only those "experts" sitting on the side lines.

Correct me if I'm wrong but the last time I heard, PCa is the second most common form of cancer among men so, the math alone would make it the second largest cause of death among men to a degree, certainly more than 266/100,000.

Jack Rowinski
Pennsylvania, USA

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Hi Jack
Yes it is the second largest cause of death among men . every year 25000 men die from it . The American Cancer Society sent my husband on the day he passed a letter congratulating him for his ten years survival and inviting him to a celebration in Burbank California for all those who survived.
Be vigilant and fight for your life and do not trust blindly your doctors , do not be afraid , be faithful and fight and argue with your doctors as much as you can, you are and inidividual and you should be treated according to your individuality and not statistics or protocols.
God Bless you

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I am Lilian's daughter and I wanted to respond to this post. I just want to wish all of you positive outcomes in treatments and blessings always. At the same time, I encourage every young man to be struck by this disease to find group therapies and other men for support. I also encourage you all to take hold and control of your treatment plans and options. To educate yourself on not just treatment options but also on medical lingo, on the human body. You have to fight for yourself more than those treating you. Do not succumb to pain!!! There's a saying that pain can kill you. Pain is a horrible thing and when prostate cancers returns or when it has metastasized, it can cause terrible bone pain. Fight the pain with a strong mind with good thoughts and spirit. Keep eating. This disease would love for your autoimmune system to fail, and most important we must all fight for more prostate cancer awareness. It is a killer and years ago it was thought to be a disease that if confined, caught quickly, and with a radical prostectomy, that would be the last of it. Unfortunately it isn't so. All the fathers, husbands, brothers, grandfathers we need you guys. You have to fight! ~In Loving Memory of my hero

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You say Correct me if I'm wrong but the last time I heard, PCa is the second most common form of cancer among men so, the math alone would make it the second largest cause of death among men to a degree, certainly more than 266/100,000.

I am not absolutely certain what you are saying, but it seems you may be incorrect in your statement so Ill try to clarify and, if you are wrong, correct the error:

PCa is not the second most common form of cancer among men, nor, as Liliana says is it the second largest cause of death among men. It is the most common form of cancer in men, but there are more deaths from lung cancer and many more from heart conditions.

Broadly speaking, heart conditions account for about 35% of male deaths in the USA and PCa deaths account for about 3% of male deaths. That is the measure, approximately, in most countries – about 10 times the PCa rate for heart. Of course, the relationships vary as men age – and that is shown in the article that started this discussion.

The statement, misquoted by Liliana, as is so often the case in the media, that PCa is the second leading cause of cancer deaths in men is correct, but that is only relative. If a race was organised between an Indie car and a Volkswagen, the outcome would be clear, but saying that the Volkswagen was the second fastest car in the US would be somewhat misleading. I don’t know if you have seen the chart CANCER 2003 ? This was produced a couple of years ago by John E. Holliday, a long time prostate cancer survivor (he was diagnosed a little before I was). It is simplistic but illustrative of the relative dangers of the various forms of cancer.

All the best

Terry in Australia

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Terry: I now understand the differentiation.

Thanks, Jack

Re: Interesting article

Every time I read an article like that I get more pissed off... not because the data is wrong but because the doctors who do the research almost never focus on the real problem - on the treatment advice given by many doctors.

I was diagnosed last year at the age of 46 and although it was a shock, I was glad to have the chance to do the research and make a decision on what treatment (if any) I wanted. I talk to many men with low PSA and gleason score who are told they need to get treated right away or who have the latest treatment pushed on them.

Keeping our heads in the sand clearly isn't the answer, understanding the risk and treatment options is.

Regards, DAvid

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I have to say to all of this that I personally know 3 gentlemen who were all diagnosed at the age of "fifty something". All had surgery for their prostate cancer. All were confined to the organ and had gleason scores of 6 and 7 before and after surgery. These surgerys took place between 15 to 20 years ago and they are still doing fine with no dectible PSA.

I would like to know what ages are considered "young age"? I am sure forty's falls in that catagory, but what beyond that?

nettie (USA)

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There is no real defintion of "young age" as far as PCa is concerned.

If we look at the statistical profiles we know that the median age for diagnosis used to be in the mid seventies and is now in the mid sixties. So anyone younger than about 63 would be on the 'young' side of the divide.

In 1996 when I was diagnosed at the age of 54 I was said to be 'young', probably because my age was 20 years less than the median. Using the same argument now would produce a 'young' age of mid-forties.

But, as I say, there is no definition that I know of - hardly surprising, since there is very little agreement on any issue involving this disease.

All the best

Terry in Australia