men need enlightening, not frightening ||November/December
to do - a medical view
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.
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.
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.
Marketing Hype Drive Therapy Choice?
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."
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
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
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".....
"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?
of Life Concerns
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
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.
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
I have added this information to page where various aspects
of death and dying are dealt with - The
Elephant In The Room
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
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
support on the internet?
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.
any of you agree with me - post on the Forum and demonstrate that Dr Goldenberg
is simply not correct in his views.