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Prostate men need enlightening, not frightening November/December 2012
What to do - a medical view


Many of us were puzzled/annoyed/despairing as we started to come to grips with our diagnosis of prostate cancer because no one seemed to be able to tell us what the best path was for us.

This Panel Discussion throws some light on the difficulty the doctors have. It is part of a series organised by the Prostate Cancer Foundation. This particular discussion was five or six years ago so some of the options for late stage disease which are now available were still being studied then. The ultimate aim of the Foundation is to get specialists working closely together to optimize patient care and outcome, particularly for men with advanced disease. The proposed multidisciplinary approach has been lacking and still is to a large extent.

The format of these meetings is that the audience, which consists of a wide range of prostate cancer specialists, considers a hypothetical case, the options available and then vote on which therapy they think is the most suitable. As I recall from the discussions I have read, there is rarely consensus, although at some stages there are majority votes for one path over another.

What is most telling is the remarks of the Chairman in setting the stage for the discussion. He says in part:

So I wanted to start by going ahead and telling you about the patient that we are going to follow through a course of advanced disease. ..... a 55-year-old man....fairly typically with a PSA of 5.2. Two years earlier, his PSA was 2.0. ....a digital rectal exam .. is negative...... and [he] presented really because of the rise in PSA. ..... biopsies, which show Gleason 4 + 3 = 7 cancer in 4 of 8 cores.

...our first question really does not revolve around local therapies, so I want to stay away from that controversy, because as you know, we could be here all night just talking about what type of local therapy this patient should have had.

I have highlighted the last few words, because they encapsulate the problem all newly diagnosed men face - there is simply no agreement between the specialists as to what the initial therapy should be, let alone what to do if there is failure of the intial treatment.

The hypothetical case continues with the man having an undetectable PSA for eighteen months. His PSA then rises to 0.20 ng/ml. He feels great. He has no symptoms. He is fully continent and attains erections with the help of medication. So what do the doctors in the forum recommend?

About a third recommend continuing observation with no treatment now
Another third recommend salvage EBRT (External Beam Radiation Treatment)
17% recommend hormonal therapy or a clinical trial,
A small percentage might use chemotherapy.
Nobody recommended salvage cryosurgery

I am not going to try to summarise the entire discussion, but would recommend reading through it. If you do that, you will see that every step of the way there are many options to consider with few sound guidelines. That is the uncertainty of prostate cancer.

Does Marketing Hype Drive Therapy Choice?
To take the difficulty of decision making along another track it is worth considering two interlinked issues - cost and efficacy of new treatments or therapies - and what they might be worth to the doctors using them.

Dr Charles "Snuffy" Myers said, a long time ago: "You must take charge of your treatment as the doctor has a different agenda than you do." and Dr Stephen Strum in an even more bleak view said "Unfortunately, we appear to be living in a time when physician income is more important than patient outcome."

In the light of these views I thought this piece in BusinessWeek Prostate Patients Suffer as Money Overwhelms Best Therapy highlighted some of the relevant issues. It is mainly about the ongoing stoush between radiologists and the urologists who have bought or invested in radiation equipment. The latter are said to be pushing more of their patients away from the radiologists towards radiation at "their" clinics quite simply because they make more money that way.

The article also touches on the Lupron/Zoladex scandal which saw a soaring use of ADT (Androgen Deprivation Therapy) either as a stand alone therapy or an adjuvant therapy for procedures such as surgery or radiation. There were few clearly identified benefits for the prostate cancer men in taking this approach, but there were very good financial benefits for the doctors thanks to secret discounts and kickbacks from drug makers. The companies selling the drugs - TAP Pharmaceutical Products Inc. and AstraZeneca LP - pleaded guilty to government charges and agreed to pay more than $1 billion in settlements.

Recently there have been media pieces highlighting the very high costs of the new medications and therapies compared with older ones and asking whether the advantages claimed for the new ones are accurate. One center indicated that they would not be using one of the newer more expensive drugs because they were not convinced that there was any value in this compared to the potential risks.

An article titled Drug Trials: Often Long On Hype, Short on Gains was published in Clinical Oncology. It summarizes some of the views raised at the annual meeting of the American Society for Clinical Oncology (ASCO) in June this year. Much of what is said here may confuse those of you who, like me, are statistically inept, but there is no mistaking what is said in this quote:

"Oncology now is commercially driven. You have companies who have shareholders, who have board members, and they want to sell their drug and have their share price go up. The whole goal is to get regulatory approval. You go to our meetings now, and it's all about the drugs and trying to get them on the market. Investigators have a vested interest too: If they have a positive study that they can publish and present at ASCO, that's their career.......... No one will publish a negative study, so you have to have positive studies to get promoted. And we in oncology want to show that we're making progress, 'winning the war on cancer', so we talk it up."

Although this article does not deal specifically with therapies for prostate cancer, the furor surrounding the approval and marketing of Provenge seems to fit in with the tenor of these remarks. The approval of this "vaccine" was great with such joyous shouts that one might have thought the Holy Grail had been discovered. Yet the evidence to support such enthusiasm seemed very slim to someone like me. And, as it turned out to someone like Marie L. Huber who co-authored the study Interdisciplinary Critique of Sipuleucel-T as Immunotherapy in Castration-Resistant Prostate Cancer also had her doubts in the light of the fact that there was a ".....lack of demonstrable tumor responses......" which led her to re-examine the way in which the data was presented and challenge this.

I could not follow all the detailed responses to this study, but read with interest a Reuter report in October, taking the matter further - The Provenge Vaccine & A Discrepancy Over Data The responses to this later article make interesting reading, with many ad hoc attacks on Ms Huber but few seemingly dealing with the fact that data was reported in way which differed significantly from the way in which the original proposal to the FDA had stated. The long history of turmoil with allegations of manipulation of stock values and insider trading by manufacturers Dendreon muddies the entire picture even more.

As I write this, FDA approval has Just been given for abiraterone acetate (Zytiga®) plus prednisone to be used for the treatment of patients with metastatic AIPC (Androgen Independent Prostate Cancer) inclusive of patients who have not received any form of chemotherapy. The approval is based on a study presented at the June ASCO annual meeting. Mike Scott's comments on The "New" Prostate Cancer Infolink are worth reading. He mentions that the data has been confused by the "unblinding" of the study and says in part

"..... we do not know (and we will now never know) the size of the true, overall survival"..... and

"According to the media release, patients treated with abiraterone acetate + prednisone obtained 'an estimated 33 percent improvement in survival' compared to those treated with a placebo + prednisone. However, it is not clear to The "New" Prostate Cancer InfoLink exactly how the available data can be used to justify that claim, given the limited amount of data available on overall survival at this point in time."

Of course we all hope that new therapies like Zytiga and Provenge will indeed improve survival, but wouldn't it be good if we didn't have to rely on blind faith and hope, and instead be given access to trustworthy facts?

End of Life Concerns


For many people who are approaching the end of their lives, there is less concern about death and more concern about dying. Most people have a degree of apprehension about the possibility of being 'kept alive' whilst suffering pain or in a vegetative state.

It is possible in some jurisdictions to enact a legal document that sets out clearly the circumstances in which life support is to be terminated, even if this has fatal results. But there are very few places where people can have open discussions with their doctors about these issues and put in place legally reliable instructions. Inevitably whenever this subject comes to the fore it is clear that changes would be required in legislation. This then leads to a fiery debate on euthanasia, something which the majority of people in most countries support in principle, but which very few govenments will support.

There are moves in several States of the United States of America to allow more certainty in ensuring that the wishes of people are followed. They would be required to discuss and agree these with their doctor. This process is generally known as Physician Orders for Life Sustaining Treatment (POLST). Examples of the forms and details of which States have adopted or are moving towards the acceptance of these forms are on the POLST Site.

This article in End of Life Concerns gives some good background information.

I have added this information to page where various aspects of death and dying are dealt with - The Elephant In The Room

Yana update
We heard earlier this month that Boxer Joe had been admitted to a hospice. He is in a bad way and I'm sure that he and Jessie would appreciate having your support.

I've mentioned Roy White and his incredible PSA numbers previously. He reports that he is back to 1,040 ng/ml after soaring to over 15,000 ng/ml earlier this year. Amazing.

I finally got around to finishing off the re-drafting and updating of the last two major pages on the site Choosing A Treatment and Resources. There was a deal of work to do, but I also had a problem, looking back, with the effects of Casodex, which I was taking at the time. Concentration and energy suffered.

BUT, the work on those sections is done now and I can move on. Despite the size of the files, some of the Yana review team found time to provide their very helpful input, for which many thanks.

I hope you and yours have a happy time over the Christmas holidays. When I ran a support group we used to have a party to celebrate the fact that most of us had survived another year - and to remember those of us who did not.
No support on the internet?
The University of British Columbia mailed me recently to advertise and seek a link to their new site dealing with prostate cancer support groups (which they term somewhat annoyingly as PCSG).

There is a Forum on the site and one post is a video by a Dr Goldenberg who says that what he terms the "human emotional touch" can only come from face to face contact in PCSG and cannot come from contacts over the internet.

It seems to me from the hundreds of e-mails I have received over the years that many visitors to the YANA site might disagree with that and I have responded to Dr Goldenberg on the PCSG FORUM along those lines.

If any of you agree with me - post on the Forum and demonstrate that Dr Goldenberg is simply not correct in his views.
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