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Prostate
Cancer
Networking
Group
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Cincinnati
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home |
| November | Two Prostate Cancer Survivor Stories | ||
| October |
Prostate Cancer Doctors Newly Diagnosed Patients |
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| September | Abstracts on Watchful Waiting | ||
| August |
Dr. Karen Knudsen on the Androgen Receptor Fran Stanton to Washington DC for the DoD |
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| July | Robert Vaughn Young April 21, 1938 - June 15, 2003 | ||
| June |
What is New in Prostate Cancer Research and Treatment? III
(from the perspective of patients) |
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| May |
What is New in Prostate Cancer Research and Treatment? II
(from the American Cancer Society) Estrogen Patches; Lifestyle reverses Prostate Cancer |
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| April |
What is New in Prostate Cancer Research and Treatment? I
(abstracts from the AUA Meeting in Chicago) |
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| March | Erectile Dysfunction, The Perils of Prevention (NYT article) | ||
| February | Agent Orange, Heriditary Prostate Cancer and the Gold Standard | ||
| January | Watchful Waiting and Surgery |
Two Prostate Cancer Survivor Stories
(adapted from the ACS website www.cancer.org)
Henry’s Story
Hello, my name is Hank, I'm 72. I live on
Bainbridge Island, Washington, with a wife, Helen and the critters of the forest
around us. I'm a forestry grad of Purdue, 1950, and spent 30 years in the U.S.
Forest Service, all that time was in Washington, Montana, Idaho, Oregon, and
mostly, Alaska. There are three grown children, who live in Montana and Alaska,
one of them fighting forest fires right now.
Prevention and control
A key in prevention or control is diet, plus exercise and certain vitamins,
aimed at discouraging prostate cancer. These particular vitamins are advisable
even if you don't have prostate cancer, in order to discourage occurrence of it.
Educate yourself and find a really good MD and get some videos on the subject,
be an active fighter and learn enough to in effect run your own
program. Knowledge is power. Prostate cancer is usually a slow grower, and you
will have time to decide how to cope, normally. If I had known in 1994 what I
know now, I would not have had a prostatectomy, which should really be the last
choice. However, each case stands on its own, and the stage of their prostate
cancer must first be determined. Is it within the prostate area, or has it
spread beyond? A critical question. If possible, get a second opinion from one
of the leading MD's in this field so as to find out what the latest information
is in this regard. Most patients do not know enough to make a good decision at
first.
Seek out information
I would say, to sum up what I've learned, if you're fifty years in age or over,
number one would be to educate yourself, starting now. Most males over 50
develop some form of prostate cancer eventually if they live long enough.
Second, go to a low fat diet and exercise. Don't smoke, of course. Third, get
your annual PSA checks. Normal is around 4 to 5, and fourth, if you get prostate
cancer diagnosed, see a leading MD in this field for another opinion. In my view
establishment MD's tend to recommend what the specialty is, and that could be
the wrong answer, or there could be a better answer. Fifth, investigate
alternative measures, mainly as prevention. There are good books on prostate
cancer and preventive diets and also seminars. Sub-scribe to some good
newsletters. Six, if you subscribe in advance to one or two good prostate
publications and get a good recent book on the subject, you will be educated
well enough should you develop prostate cancer, and again, knowledge is power.
It takes the scare factor out of your diagnosis should you get it, and you will
have a pretty good idea what to do next. And, lastly, one should be skeptical of
initial recommendations if diagnosed with prostate cancer, particularly if
you're dealing with a doctor you know little about. How do you know that he or
she has a level of expertise really needed in terms of cutting edge information?
Get a second opinion from sources you know are on the leading edge, and to do
this, of course, you have to be aware of these sources, do personal education.
That's about all I had to say, so farewell, and be healthy.
Seize the Day
I would say that I'm trying to do as many things I always wanted to do but never
had a chance to do. And so, I'm primarily engaged in a lot of those kinds of
activities. Right now I'm planning a bicycle trip to Germany, and that's just an
example.
Henry H.
Frank’s Story
My name is Frank, and I'm 73 years old. I'm divorced with two wonderful grown
children and three even more wonderful grandchildren. I was diagnosed with
prostate cancer in the summer of 1993, when I was 66 years old, and here's how
it happened. I had applied to participate in the clinical trial of the drug
Proscar, which was designed to reduce swollen prostates when I was having a
problem with that. I was tested to help determine eligibility, and it turned out
I had cancer. My PSA was 7.3 with an aggressiveness or Gleason score of 7 out of
a possible 10.
Making an informed decision
Cancer cells were in all seven of the tissue samples, meaning that the cancer
had already spread throughout the prostate. The urologist immediately
recommended surgery as "the gold standard" of treatment options, assuming, he
would do the surgery himself. When I reminded him that my health coverage was
with an HMO and which has its own staff physicians, he couldn't wait to get me
out of his office. I was given a bone scan and referred to a staff urologist,
and he described the options as: surgery, external-beam radiation, and watchful
waiting, and the potential side effects of each one. He did not himself want to
do surgery because of what he felt was the probability that the cancer was
already outside the prostate, though not yet detectable, and he was skeptical
about the effectiveness of radiation. He actually leaned toward watchful
waiting. The radiation oncologist, on the other hand, thought radiation might
actually cure the cancer. And by that time I was somewhat confused, not to
mention worried, so I decided to go outside the system and pay for a third
consultation with an internationally renowned urologist at in Seattle. And he
looked at the biopsy results and bone scan and did his own digital rectal exam,
and strongly recommended external-beam radiation, on the belief that the cancer
had not yet spread outside the prostate. So I decided to go ahead with the
radiation. Also consulted with a naturopath, complementary methods, to help my
body cope with the stress of radiation treatments. And I think it did help,
because I tolerated the 33 treatments quite well. I didn't miss a day of work. I
did experience some fatigue toward the end.
A short reprise
As far as my feelings were concerned, I went from being worried and scared back
to being my usual optimistic self, and I think that has helped me in terms of
lifestyle since that diagnosis. And in fact the radiation worked for about five
years, then my PSA score started going up again and so the urologist recommended
another biopsy, and again, the biopsy indicated that there was cancer throughout
my prostate and also had spread to the seminal vesicle, which is just outside
the prostate. On the other hand, the bone scan and the MRI didn't detect any
cancer cells outside the prostate and seminal vesicles.
Risk reduction and treatment options
My treatment options had narrowed considerably, to hormone treatment or
watchful waiting. And watchful waiting didn't appeal to me, although my
aggressiveness score had gone down to six, and it would be very hard for me to
just sit back and wait and see what happened. Although I did take several
months to explore
alternative approaches, complementary medicine approaches, and I didn't find
anything other than a change in diet and nutrition to reduce the risk. I had
been on a low fat diet but I went on an even lower fat diet and now I completely
avoid things like cheese and red meat and anything except fish and chicken and
turkey, and I have a diet that's high in tomatoes and soy and veggies and fruit
and all of that has certainly led I think to my feeling pretty healthy. And I am
pretty healthy, with one minor or major exception you might say. But eventually
I decided that the hormone treatments were the best way to go for my situation
and that was also what my oncologist recommended.
Hormone treatments
The hormone treatment causes your system to stop manufacturing testosterone,
which is a major nutrient for prostate cancer cells, and within 5 months of
starting the hormone treatment, my PSA had dropped from 27 down to .4. And I've
been on the hormone treatments just about a year and my PSA is currently at .8.
I'm getting ready to participate in a prostate cancer vaccine study at the
university of Washington, which I can do without getting off of the hormones. My
oncologist and I are in favor of intermittent hormone therapy, where you give it
for a while and when your PSA has bottomed out, then you stop it and wait until
it goes up to a certain level and we're not there yet. And the vaccine study is
very experimental. If it does any detectable good it will be somewhat
surprising, but still it's a way of trying to find a cure, which I'm very much
in favor of, of course.
Fighting for the cause
But what happened when the cancer came back is that I began to inform myself in
much greater breadth and depth than I had the first time around. I attended a
two-day seminar sponsored by the American Cancer Society, and the university and
some other groups, and I learned so much about the disease that I had not
realized before. And I also realized there was a major problem with funding of
prostate cancer research so I decided to get involved as a volunteer with the
American Cancer Society in lobbying for more prostate cancer research money. I
have a long background in politics and government and have done lobbying before
and been lobbied before. My last 12 years before I retired I worked for the
Seattle City Council as a legislative analyst and legislative aide. I became a
member of the Puget Sound Area Prostate Cancer Task Force and we have already
been in business just short of three years. We did get a memorial through the
state legislature asking the federal government to put more money into cancer
research. The other co-chair and I have been to DC twice, working with the
National Prostate Cancer Task Force and lobbying members of the Washington delegation,
the two senators and the congressmen. It's been quite fulfilling to be able to
do that. One of the things that I have learned is that based on the research
that has been up to now, they are really on the verge of some major steps
forward so additional research now would be very timely.
The Next Step
The Task Force's next mission is to introduce legislation at the state level in
January with the help of our legislative sponsor in order to establish a State
Cancer Commission. Under the aegis of the State Department of Health, the
Commission would take a look at the situation throughout the state in terms of
all cancers and peoples' access to care, expertise and lifestyle situations and
whatever, and also the level of information that's available to the general
practitioners and family medicine doctors. This is to see if there's some things
the state can do to help find a cure for cancer and methods of prevention that
are more effective. It's something that we've been collaborating in writing the
legislation, with a high-level staff person from the Department of Health and
we're looking forward to working with cancer survivors of all kinds in all parts
of the state between now and January to get their support with their own
legislators for this legislation. We'd also like to see the state get involved
in prostate cancer research, I mean, cancer research. But we also know there's a
great reluctance to do that because it involves so much money and the federal
government is already so deeply invested in it, but we're going to give it a
shot anyway. And we would see that as a great step forward. The commission would
take a year to two years to thoroughly study and analyze the situation in
various parts of the state and the governor with recommendations as to what the
state role ought to be.
My life is full and satisfying
And as far as the impact now on my life and my style, there are lots of side
effects to this hormone treatment. Loss of energy is one of them, maybe I had
too much energy in the first place, but I can certainly feel the difference, and
weight gain is another. There's a potential loss of bone mass and muscle mass,
and hot flashes are very common side effect of the hormone treatment. I'm having
hot flashes but I'm also taking some pills that reduce the frequency and
intensity. So my life hasn't really changed very much. I have a very active
social life and my family and friends is my support network outside of the work
that I do with the Prostate Cancer Task Force. I'm very close to the children
and I'm very close to my ex-wife, and I have many friends. I am very active as a
volunteer in a group in Seattle called “The Friends of Pea Patch”, which
promotes community gardening, and that's something I've been doing for several
years. I've felt some strains from the prostate cancer, I mean from the hormone
treatments because of the fact that it does reduce my energy, so I have to sort
of work harder at working harder. All in all, I'm living a very full and
satisfying life. The issue remaining around the hormone treatments is how long
they will be effective. For some people it works for a couple of years and for
some people it works for ten or more years. And you really don't know which of
those categories you're going to fall into until you've been on it for a year or
two years. So I have that kind of uncertainty hanging over me, but it is
largely overcome by my natural optimism.
My advice to other prostate cancer patients
I think the main thing I would recommend is not to be scared into making a quick
decision about what treatment option to pursue because, by and large, even the
most aggressive prostate cancers are slow growing compared to other kinds of
cancers, which can kill you in a few months. In most cases of people I know,
they're not that far advanced when the prostate cancer is diagnosed. But there
is this problem that you get different advice from different specialists based
on their specialties, so it really pays to inform yourself as much as possible
about the research that's been done. Look into the nutritional aspects of it,
and also look into the cutting edge approaches that have been developed. Even
with the standard therapies that have been there for many years, the radiation
and surgery and watchful waiting and hormone treatment, they're being fine-tuned
in some ways and they're more effective than they used to be. In surgery,
there's such a thing as nerve sparing surgery, which doesn't have as many side
effects on potency and other things as surgery used to have. They have become
better at aiming radiation to avoid collateral damage, and better in combining
hormone treatments with these other treatments. I would strongly recommend
learning as much as possible about all these alternatives before making a
decision about which way to go. And also talk to other prostate cancer
survivors.
Frank K
=========
back to top =========Prostate Cancer Doctors
At our last meeting someone asked for names of
prostate cancer doctors. I gave a short answer --- here is a longer one.
Prostate cancer doctors are experts in prostate cancer therapy - all their
patients have prostate cancer. A small group of prostate cancer doctors helps
the newly diagnosed patient to make up his mind, and a much larger group of
prostate cancer specialists provides therapy. The names and addresses of doctors
of both groups can be found at
www.prostate-cancer.org/resource/special.html (this URL as well as the other
URLs are clickable in the HTML version of the newsletter at
www.pcngcincinnati.org).
Below are the names of a few prostate cancer doctors truly outstanding in my
opinion. It is a personal choice partially based on the Internet visibility of
these doctors; their publications, and comments by their patients. All doctors
listed have a practice with prostate cancer patients exclusively.
The doyen of the small group of prostate cancer doctors -where a patient would
go after diagnosis but before treatment- is Dr. Stephen B. Strum in Ashland
(Oregon) who started an electronic bulletin board “Patient to Physician”.
Prostate cancer doctors answer questions from patients. To become a member of
P2P, click on
www.prostate-cancer.org/mailists/p2pinst.html. Dr. Strum is also co-founder
of the PCRI, and a major contributor to PCRI’s newsletter “PCRI Insights” (www.prostate-cancer.org/resource/insights.html).
Drs. Mark Scholz and Richard Lam have a combined practice in LA, described on
their web site
www.prostateoncology.com/. Information brochures and news notes are posted
as well. Other prostate cancer doctors in LA include Glenn Tisman and Robert
Leibowitz – the latter is known as an advocate of systemic (hormonal) therapy
instead of local therapy. Dr. Eric Small is in San Francisco and Dr. Celestia
Higano in Seattle.
I think that newly diagnosed patients residing on the West coast are fortunate
to have so many prostate cancer doctors nearby. Patients are not so fortunate in
the South, Midwest and East. The best known prostate cancer doctor in the region
is Dr. Charles Myers (Charlottesville, VA) who is also the chief editor of
Prostate Cancer Forum (www.prostateforum.com/).
Dr. Myers is an excellent speaker -- several of us went to Kettering near Dayton
to hear him speak, and one of our members sees him regularly.
Other prostate cancer doctors, all oncologists, include Dr. Oliver Sartor (New
Orleans, LA), Drs. Donald Trump (Buffalo, NY), Judd W. Moul (Washington DC
–army), Daniel Petrylak (New York), Roy Berger (Port Jefferson Station, NY), and
Marc Garnick (Boston).
Patients newly diagnosed with prostate cancer received the bad news from an
urologist who may advise radical prostatectomy, and typically refers the patient
to a radiologist for a second opinion. Both specialists favor local therapy, and
many patients loose their prostate without having considered the possible role
of systemic therapy (the specialty of oncologists), or a combination of systemic
and local therapy. Systemic therapy includes chemotherapy and hormonal therapy
and also ‘watchful waiting’ – see next page. Visiting an oncologist for a second
opinion may be a fine alternative to visiting a radiologist!
The group of prostate cancer doctors specialized in a particular therapy is much
larger than the group of prostate cancer doctors a newly diagnosed patient would
visit. Radical prostatectomy (RP) has a few dozen outstanding practitioners, and
there are at least as many experts in radiation therapy. The top three RP
specialists are probably Drs. Walsh (Baltimore), Catalona (Evanston/Chicago) and
Stamey (Stanford). Dr. Stamey is now retired as a urologist, but still active in
research on the genetic aspects of prostate cancer. Drs. Walsh and Catalona are
not far from retirement. The RP experts in Ohio are probably Drs. Klein
(Cleveland) and Burgers (Columbus). Drs. Zincke and Messing, practicing in
Rochester (MN) and Rochester (NY) respectively, are known for their discovery
that hormonal therapy added to RP was better than RP alone, in particular for
patients with pelvic lymph node involvement.
Laparoscopic RP has the advantage of quicker recovery than traditional RP, and
lesser odds of complications, but the learning curve for surgeons is long and
steep. This type of surgery was developed in France, and experts in the USA
include Drs. Menon and Tewari in Detroit in the Henry Ford Hospital, and Dr.
Krongrad in a private clinic (Miami, FL).
Experts in radiation therapy are either experts in EBRT (External Beam Radiation
Therapy) or brachytherapy (seeds). Drs. Critz and Williams in Atlanta and Dr.
Dattoli in Sarasota (FL) have excellent reputations in brachytherapy; they
combine ‘brachy’ with EBRT. Other outstanding brachytherapists are in Seattle
(Drs. Blasko, Grimm and Wallner). EBRT specialists include Drs. Mack Roach III
(San Francisco), D’Amico (Boston), Zagars and Pollack (MD Anderson, Houston),
Kattan & Fuks (MSK – Memorial Sloan Kettering, New York), Michalski & Mansur
(St. Louis), and many others.
Exceptional prostate cancer specialists in chemotherapy are Drs. Scher (MSK, New
York), Pienta (Ann Arbor) and Logothetis (MDA, Houston). There is not enough
space in this newsletter to mention some of the other prostate cancer
specialists in chemotherapy, or in proton radiation, or in high-dose
brachytherapy, or in cryotherapy. Patients familiar with the Internet can easily
find the names of other experts. My apologies if I did not mention your favorite
specialist!
All prostate cancer specialists mentioned here have two things in common: 1)
they are specialized in treating prostate cancer patients and 2) they are
researchers publishing the results of their studies. This does not imply that
treatments by prostate cancer specialists are necessarily better than those who
are not prostate cancer specialists and don’t publish, but it is certainly
suggestive.
The addresses of these specialists and the abstracts of their research articles
can be found by typing their name and the words ‘prostate cancer’ in Google’s
and Pubmed’s search windows, respectively (www.google.com
& www.ncbi.nlm.nih.gov/PubMed/).
Kees DeJong
------------------------------------------------------
Newly Diagnosed Patients
Dr. Mark Scholz, an oncologist, has only
prostate cancer patients. He wrote two outstanding articles on newly diagnosed
prostate cancer, published in PCRI Insights (Feb. ’03 and Aug. ’03) - below is
the first page.
Notice that Dr. Scholz does not use the term ‘Watchful Waiting’; he specifies
‘surveillance with dietary modification’ as a ‘systemic treatment option’.
Newly diagnosed prostate cancer is a disease
in transition. Historically, because it was diagnosed in the advanced stages,
the diagnosis of prostate cancer portended an early death just like many other
common cancers.
Over the last 10 years, however, the widespread use of PSA testing and
ultrasound directed biopsies has dramatically changed the nature of this disease
for the better. These advances have, in a sense, created an entirely new entity,
a cancer that is not very life threatening.
This is not to say that the risk of a prostate cancer death has been totally
eliminated. A small percentage of newly diagnosed patients have high-grade
variants that are more dangerous. We also still see men who have not availed
themselves of the benefit of early PSA screening, men who already have advanced
disease when they are diagnosed.
Fortunately, these sad circumstances become less common every year as more and
more men get PSA screening. However, realizing that some forms of prostate
cancer are indeed dangerous does not take away from the fact that for most men
the danger of dying from this disease is low when it is managed properly.
The transformation of prostate cancer into a treatable disease creates a whole
new arena of challenges. Side effects of treatment take on added importance, and
the quality of life becomes a priority when survival is no longer the central
issue. Side effects from treatment tend to be immediate, whereas the
slow-growing effects of untreated cancer may not be felt for 10 to 15 years.
Potential side effects such as impotence or incontinence are not trivial.
The number of treatment options is increasing as technology continues advancing.
The choices available can generally be thought of in terms of four categories.
Local treatment options (radical prostatectomy, brachytherapy, external
radiation, cryotherapy) are directed at the eradication of the prostate gland
and the cancer it contains. Modern technology in expert hands can accomplish the
sterilization of the prostate gland from cancer with a high degree of
consistency.
However, there are two potential drawbacks to the local treatment options. One
is the potentially irreversible side effects to the adjoining structures (e.g.
the erectile nerves, bladder or rectum). The other is the disheartening
possibility of undergoing the risks of local therapy only to later have a
relapse because the cancer had already spread to elsewhere in the body.
Systemic treatment options (surveillance with dietary modification, antiandrogen
monotherapy or combined hormone blockade for 12 or more months) treat the whole
body but are suppressive, not curative in nature. The selection of one of these
options is based on the philosophical belief that prostate cancer is a low-grade
process. Therefore, effective suppressive treatment may be able to convert it
into a chronic, non-progressive condition. The advantage of these options is
that the side effects are usually reversible. The disadvantage is the absence of
the possibility to get closure and move on; a systemic approach requires one to
remain educated about the disease and watch the situation closely as it evolves.
Combination options (systemic plus local treatment) provide the best chance for
outright eradication of the disease but using two treatments instead of one
incurs a higher risk of side effects.
Conditioning options usually consist of some form of hormone blockade
administered for three to six months as a lead-in to local therapy. Hormone
blockade given in this fashion has not been shown to improve the cure rates of
state-of-the-art local treatment. However, by reducing the size of the prostate
gland prior to therapy, neoadjuvant hormone blockade reduces the potential side
effects of the local therapy.
The tension between the risk from the cancer and the risk from treating the
cancer mandates a process of robust education that enables men to be fully aware
of the short and long term implications to the various options before they make
irreversible choices.
Fortunately, newly diagnosed early prostate cancer is a slow growing disease,
permitting sufficient time for the problem to be studied.
The progressive educational process, which hopefully leads to selecting optimal
treatment, can break down for a variety of reasons. This disease is unusual
because patients themselves make the treatment decisions.
Patients should be aware of some pitfalls inherent in a situation where they are
selecting their own cancer strategy. Many patients are in a state of shock and
grief for a few months after diagnosis.
Strong emotions are also stirred up as patients reflect on the dramatic personal
consequences attendant to a high-stakes situation that can affect sexual and
urinary function permanently.
The clear and objective reasoning that is needed can be difficult under these
circumstances, but patients should be encouraged to persevere and weigh all the
relevant factors.
This shift of responsibility from physicians to patients results from the fact
that there are multiple different treatment choices with indistinguishable
survival rates.
Therefore, examining the potential side effects of each treatment option and
comparing it with the other choices is the only logical way to make distinctions
among these many options.
Since it is the side effects that distinguish these alternatives, patients
themselves must decide which type of side effects they are willing to personally
risk.
(www.pcri.org/resource/pdf/Is6-1.pdf)
=========
back to top =========Abstracts on Watchful Waiting
RP and Watchful Waiting comparable as far as overall survival is concerned!
A randomized trial comparing radical prostatectomy with watchful waiting in early prostate cancer. N Engl J Med. 2002 Sep 12;347(11):781-9.Holmberg L, et al.Regional Oncologic Center, University Hospital, Uppsala, Sweden.
BACKGROUND: Radical prostatectomy is widely used in the treatment of early prostate cancer. The possible survival benefit of this treatment, however, is unclear. We conducted a randomized trial to address this question.
METHODS: From October 1989 through February 1999, 695 men with newly diagnosed prostate cancer in International Union against Cancer clinical stage T1b, T1c, or T2 were randomly assigned to watchful waiting or radical prostatectomy. We achieved complete follow-up through the year 2000 with blinded evaluation of causes of death. The primary end point was death due to prostate cancer, and the secondary end points were overall mortality, metastasis-free survival, and local progression.
RESULTS: During a median of 6.2 years of follow-up, 62 men in the watchful-waiting group and 53 in the radical-prostatectomy group died (P=0.31). Death due to prostate cancer occurred in 31 of 348 of those assigned to watchful waiting (8.9 percent) and in 16 of 347 of those assigned to radical prostatectomy (4.6 percent) (relative hazard, 0.50; 95 percent confidence interval, 0.27 to 0.91; P=0.02). Death due to other causes occurred in 31 of 348 men in the watchful-waiting group (8.9 percent) and in 37 of 347 men in the radical-prostatectomy group (10.6 percent). The men assigned to surgery had a lower relative risk of distant metastases than the men assigned to watchful waiting (relative hazard, 0.63; 95 percent confidence interval, 0.41 to 0.96).
CONCLUSIONS: In this randomized trial, radical prostatectomy significantly reduced disease-specific mortality, but there was no significant difference between surgery and watchful waiting in terms of overall survival.
RP and Watchful Waiting: No difference in Quality of Life?
Quality of life after radical prostatectomy or watchful waiting. N Engl J Med. 2002 Sep 12;347(11): 790-6. Steineck G et al., Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden.
BACKGROUND: We evaluated symptoms and self-assessments of quality of life in men with localized prostate cancer who participated in a randomized comparison between radical prostatectomy and watchful waiting.
METHODS: Between 1989 and 1999, a group of Swedish urologists randomly assigned men with localized prostate cancer to radical prostatectomy or watchful waiting. In this follow-up study, we obtained information from 326 of 376 eligible men (87 percent) concerning certain symptoms, symptom-induced distress, well-being, and the subjective assessment of quality of life by means of a mailed questionnaire.
RESULTS: Erectile dysfunction (80 percent vs. 45 percent) and urinary leakage (49 percent vs. 21 percent) were more common after radical prostatectomy, whereas urinary obstruction (e.g., 28 percent vs. 44 percent for weak urinary stream) was less common. Bowel function, the prevalence of anxiety, the prevalence of depression, well-being, and the subjective quality of life were similar in the two groups.
CONCLUSIONS: The assignment of patients to watchful waiting or radical prostatectomy entails different risks of erectile dysfunction, urinary leakage, and urinary obstruction, but on average, the choice has little if any influence on well-being or the subjective quality of life after a mean follow-up of four years.
Knowledge about Watchful Waiting Negligible
Awareness of Prostate Cancer among the General Public: Findings of an Independent International Survey. Eur Urol. 2003 Sep;44(3):294-302. Schulman CC et al., Department of Urology, Erasme Hospital, University Clinics of Brussels, Brussels, Belgium.
OBJECTIVES: To assess the level of awareness of prostate cancer among the general public in Europe and the USA.
METHODS: An independent survey was undertaken across six European countries (France, Germany, Italy, Spain, Sweden and the UK) and the USA. A total of 1400 people, 700 men aged 50-70 years and 700 women aged >/=30 years with a partner or close male relative aged 40-70 years, completed a 10-minute telephone interview during which they answered questions about prostate cancer.
RESULTS: When asked about types of cancers, the majority of female respondents (79%) mentioned breast cancer but less than half of the male respondents (39%) mentioned prostate cancer. Urinary problems were identified as a symptom of prostate cancer by 86% of respondents, but only 1% of the sample was aware that the disease could be asymptomatic. Half of all respondents were unaware of the use of simple tests to detect early prostate cancer and only 25% mentioned the prostate-specific antigen test. Awareness of hormone therapy for early prostate cancer was relatively low (23%), while awareness of watchful waiting was almost negligible (1%).
CONCLUSIONS: This contemporary survey, the largest study of prostate cancer awareness ever undertaken and the first to provide an international perspective, clearly demonstrates the lack of awareness of prostate cancer among the general population and highlights the need for health education campaigns focusing on the disease.
Partners of Patients with CaP do not Prefer Watchful Waiting
Partner's influence on patient preference for treatment in early prostate cancer. BJU Int. 2003 Sep;92(4):365-9. Srirangam SJ et al,. Department of Urology, Stepping Hill Hospital, Stockport, UK.
OBJECTIVE: To determine the partner's influence on the patient's choice of treatment for early prostate cancer, and whether partner characteristics and biases predict the preference.
PATIENTS, SUBJECTS AND METHODS: Questionnaires for partners to complete retrospectively were sent to consecutive patients recruited in a study comparing treatment options for early prostate cancer. The partners' perceptions about prostate cancer were explored and the partners asked to comment on the suitability of each treatment option. Partners recorded their influence on the patient's choice using a 10-point visual linear analogue scale.
RESULTS: Questionnaires were sent to 116 eligible patients and 82 were returned for analysis (mean partner age 63 years). When asked to recall the treatment options initially discussed, all partners recalled radiotherapy (EBRT), all but one radical prostatectomy (RP), 51% brachytherapy, but only 29% watchful waiting (WW); 41% of partners stated RP as their chosen option, 37% EBRT, 12% brachytherapy and 10% no clear favorite. None preferred WW. Employment and education status were not significant predictors of partners' preference but retired partners and those aged > 65 years were 3 times more likely to prefer EBRT than were their employed and younger counterparts, respectively. The partners' mean (median, sd) self-assessed influence factor was 4.8 (5, 3.4). Of the partners, 88% reported active involvement throughout the process, identifying information-gathering and emotional support as their primary roles. Most deliberately chose not to influence the patient's final decision.
CONCLUSION: Partner preference is influenced by pre-existing conceptions about cancer and its treatment. While undoubtedly influential throughout the decision-making process, partners deliberately left the final decision to the patient.
Is “Watchful Waiting” a
Misnomer? Most men don’t wait – they change diet (less fat, less calories,
more soy), take food supplements (lycopene, Vitamin E, selenium, etc.).
What is this? ‘Pro-active Waiting’? ‘Aggressive waiting’? ‘Therapeutic
Waiting’?
Lifestyle Changes May Prevent or Reverse Prostate Cancer (this Medscape article is based on the abstract presented at the 2003 annual meeting of the AUA by Dr. Ornish) http://www.medscape.com/viewarticle/453159
A healthy lifestyle involving a low-fat diet, exercise, and other factors may help stop or even reverse the progression of prostate cancer in men undergoing watchful waiting, according to the findings of the first randomized controlled clinical trial on the subject.
The research was conducted by Dean Ornish, MD, clinical professor of medicine at the University of California, San Franciscoe and author of several popular books on the benefits of a low-fat diet for reversing heart disease.
The researchers randomized 87 men with biopsy-documented prostate cancer to an experimental group or a nonintervention control group. Men all had prostate-specific antigen (PSA) levels of 4 to 10 ng/mL and Gleason scores of less than 7.
The experimental group ate an entirely plant-based low-fat diet that emphasized unprocessed whole foods. Of the total calories, 70% came from complex carbohydrates and 20% came from protein, a large proportion of which was from soy. Participants also engaged in moderate aerobic exercise, stress management, and psychosocial group support. All men had declined conventional treatment.
The men were followed for one year, during which time PSA was measured twice at the beginning and then once every three months. Mean PS levels decreased by 5% in the experimental group after three months but increased by 1% in the control group (P = .045). Similarly, after one year, mean PSA levels decreased by 3% in the experimental group but increased by 7% in the control group (P = .034).
They found that changes in PSA at both three months (P = .047) and one year (P = .007) were directly correlated with adherence to the diet and lifestyle intervention. "The control group was following the diet 75% as well as the experimental group, yet their PSA rose," the authors note.
The researchers also evaluated the growth of the prostate cancer cell line LNCaP after they had added serum from patients. They found that growth was inhibited by 67% in the experimental group compared with 12% in the control group. "It is possible that lifestyle changes may have affected the production of PSA without affecting the underlying prostate cancer," Dr. Ornish told Medscape, "but the direct inhibition of LNCaP cells argues against that," he added. Dr. Ornish also pointed out that migrant studies have shown that when people eating a predominantly plant-based diet move to the U.S., their rates of prostate cancer increase dramatically. By comparison, the incidence of microscopic prostate cancer shows little variation worldwide, suggesting that a high intake of dietary fat and/or animal protein may help promote clinically significant prostate tumors.
The study size was not large enough to determine the relative contribution of each component of the intervention, he noted. But he suggested that urologists might consider recommending that patients make comprehensive changes in diet and lifestyle, regardless of whether a patient decides to undergo conventional treatment. He added that comprehensive changes in diet and lifestyle might also reduce the risk of recurrence in patients who do undergo conventional treatment.
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Dr. Karen Knudsen Talks About the Androgen Receptor
At last month’s meeting Dr. Karen Knudsen, an Assistant Professor of Cell
Biology, Neurology, and Anatomy at the University of Cincinnati, and the only
basic prostate cancer researcher in the city, gave a highly informative talk
about the androgen receptor (AR) and its role in prostate cancer. Dr.
Knudsen’s laboratory is a state-of-the-art facility and has research in
prostate cancer currently under way that is funded by several state and
national organizations including the National Institutes of Health, the
Department of Defense, and the American Cancer Society.
Two of the most interesting areas that Dr. Knudsen discussed in her
presentation are illustrated in two slides we have included in this
news-letter. The first had to do with where in the cell process the treatment
medicines we typically know about have their mechanism of action. This is
shown in the first slide below. The second had to do with what actually
happens when prostate cells go from being androgen dependent and responsive to
hormone therapy to being androgen independent and not responsive to hormone
therapy. This is shown in the second slide below.
PCNG MEMBER HELPS REVIEW
PROSTATE CANCER RESEARCH PROPOSALS
OF THE DEPARTMENT OF DEFENSE
As one of several dozen prostate cancer advocates, I recently
participated in the evaluation of basic research proposals submitted to the
Prostate Cancer Research Program (PCRP) sponsored by the Department of Defense.
As consumer reviewers, we participated along with scientists to determine how
Congress’ appropriation of $85 million will be spent on future prostate cancer
research. The U.S. Army Medical Research and Materiel Command (USAMRMC)
Congressionally Directed Medical Research Pro-grams (CDMRP) at Fort Detrick,
Frederick, MD manage this funding program. Since 1997, congressional
appropriations for the PCRP have totaled $480 million.
The consumer advocates represent the collective view of prostate cancer
survivors and patients, family members, and persons at risk for the disease. We
assessed the research proposals for relevance to issues such as disease
preven-tion, screening, diagnosis, treatment, and quality of life after
treatment. The review sessions were held in Reston, VA during the middle of
June.
Consumer advocates and scientists have worked together in this unique
partnership to evaluate the scientific merit of prostate cancer research
proposals since 1997. This year, 44 consumer reviewers joined approximately 240
scientists in the review process. Colonel Kenneth Bertram, M.D., an oncologist
and Director of the CDMRP, expressed his appreciation for the consumer
advocates’ perspective in the scientific review sessions. “They have provided
valuable insight into funding decisions and helped the scientists understand the
consumers’ perspective of innovative research. Likewise, the consumer advocates
have been enriched by learning more about prostate cancer through discussing
proposed research with scientists and seeing the future hopes of successful
research.”
Over 800 research proposals were submitted in the 2003 program cycle. Proposals
were received in response to a program announcement that encouraged innovative
multi-disciplinary prostate cancer research aimed at the elimination of prostate
cancer. Proposals were solicited across all disciplines, including the ba-sic,
clinical, social, and psychosocial sciences, as well as public health,
economics, quality of life, alternative therapies, occupational health, nursing
research, and environmental concerns.
Through this beneficial partnership between the consumer advocacy and
scientific communities, the Department of Defense serves as an effective vehicle
for responsible progress in the application of science to our national health
concerns. It was an honor to represent Cincinnati and the PCNG in this effort.
Fran Stanton
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Robert Vaughn Young
April 21, 1938 – June 15, 2003
From a letter to E-mail Mailing lists of Prostate Cancer Patients
Robert was fond of analogies. If he could explain something with a good
analogy then he figured he had got it nailed down. One of his essays (on
Phoenix5) explains his Mt. Everest analogy. I remember when he first came up
with it the week after half a dozen books about climbing Everest arrived from
amazon.com.
He told me stories about teams that climbed the mountain and what they carried
and the struggle and difficulties. One thing that stands out in my mind is
how he described that as climbers get higher and the air becomes thinner you
get to the point where you take four steps for every one breath. And as you
approach the summit it be-comes one step for every four breaths.
That is where Robert has been for the last few weeks. One step for every four
breaths.
Robert died at 1:10 p.m. on Sunday, June 15, 2003 reaching the summit of his
Mt. Everest. It was a couple of hours after his son, who spent the night with
him, left to return to California. I was at his side, holding Robert's hand in
mine. He was in no pain, resting calmly and peacefully until his last breath.
Robert will be cremated in accordance with his wishes, and his ashes will be
scattered over water. Robert loved Vashon Island and Puget Sound and had fond
memories of the sailing scene around San Diego.
Robert found fulfillment and joy in helping all those in the prostate cancer
community. My life and I'm sure many others' are richer because of his life
and his work.
Caren Cohen Young
Robert Young was a great writer.
Parts of the following writings were read at his memorial service on July 12,
2003:
the first is one of the more than 1,000 letters he wrote to the various
mailing lists for prostate cancer patients,
the second and third are from his
‘Climbing Everest: My Cancer Journal Essays’ and ‘Other Essays and Stories’
respectively,
and in the fourth Robert gives the basic message of Phoenix5.
Letter from Robert Young
Date: Tue, 19 Mar 2002 16:52:10 -0500>
Sender: Mailing List <PROSTATE-HELP@PEACH.EASE.LSOFT.COM>
From: Robert Young <robert@PHOENIX5.ORG>
Subject: Re: [PHML] personal update
At 03:09 PM 3/19/2002 -0500, Jules105@aol.com wrote:
Dear Robert: You are an amazing fellow. I sincerely wish you success in your
attempts to manage this disease.
Thank you.
I don't mean to intrude but may I ask why you didn't try the high dose Casodex
+ Proscar, or Casodex + Dutasteride, protocol rather than using Zoladex?
Also, why aren't you trying some the drugs which are thought to be able to at
least slow down the PSA rises, like Exisulind, or others? Or, how about, Dr.
Myers suggestion of estradermal patches + low dose progestins such as Megace?
The gossip presumes that these approaches have fewer long term side effects.
Please remember that I'm not suggesting them, I'm only asking whether you have
considered them.
Nope. But that does deserve an explanation, although it won't sit right with
many.
I haven't considered Exisulind or someone's protocol for the same reason I
never considered flax oil, MGN3,
PC-Spes, licorice root or the other 3,000 regimens that have passed through
this (and other) lists.
As many know, I've dug up resources for people on more treatments and drugs
than I can count, merely because they asked if there was any information
about it. So there is no lack of my ability to track down information.
It is my attitude and perspective about this disease and my life.
And this is where I am going to upset a LOT of people.
I have absolutely NO interest in (my words) scratching and clawing for a few
more months/years of my life which I can then spend scratching and clawing for
a few more months/years.
I think there is a better use of my time, not to mention how it affects my
attitude in that time spent.
In my estimation, I have already beaten this disease. Given my condition at
diagnosis, I should be dead by now. The fact that I am not and that I can
continue to make a contribution has given me more than I could have ever
imagined. In that vein, I consider myself the luckiest man in the world.
Let me give you something that I've said before (and that makes some people
grow pale). If I were offered a full cure of this disease, on the condition
that I would be returned to my pre-diagnostic state (with no disease or pain
at all) where I have to give up and lose everything that I have seen, realized
and achieved since my diagnosis on 11/23/99 (and that would have to include
every friend I've made, help that I've provided, my Web site and finally my
Caren), I would decline it in a nanosecond.
If that startles some, merely take it as my view of the value of my life to ME
after diagnosis.
In my view, my time is better spent helping others. And while one might say,
"But treatment _____ would give you more time to help others," I think that is
wrong. The time I have gained - against those odds - came from my work, not
the drugs. Yes, the Casodex dropped my PSA but I also firmly and completely
believe that my system responded so well BECAUSE of my attitude and my work.
So we seem to have a Catch-22, don't we?
No, not to me.
It is not relevant to your question but let me say that I really have no
problem with this disease finally taking me. But, if so, it is going to do it
on MY terms. Right or wrong, it will be done MY way.
In other words, my personal integrity (clearly my own definition) is more
important to me than anything else.
Additionally, I am sincerely stubborn and laced with a deep disrespect for the
disease. In my view, all it can do is kill me. Meanwhile, I am the only one
who can relinquish my dignity and identity. That is why I keep a sense of
humor that bothers many. I would rather laugh at the disease than wring my
hands and give it one whit of control over my life. It did that for the first
10 or so months after diagnosis, sending me into black holes until I
recognized the pattern and the effect. The cancer was like a sadistic torturer
who wanted to break me, to convince me that all I had to do was relinquish my
identity and my integrity in order to live. All I had to do was give up.
Then I saw the trap.
What sort of life is that?
So color me whatever you want but I will not beg, plead, scratch or claw for
anything again. Nor will I waste my time pursuing treatment X or Y if it
doesn't fit my temperament, which I admit is incomprehensible to most others.
But, you see, that is what often defines personal integrity. It makes sense
only to the individual. Yes, it also invites those who seem insane. That is
the danger. As with any freedom, there is a danger but that is no reason to
end the freedom.
Let me put it this way.
I have very little control over how LONG I will live. I can wear a seat belt,
bullet-proof vest, parachute or any number of precautions but at any moment, I
can be taken by a heart attack or any natural or unnatural disaster. But I do
have full and complete control over HOW I live in whatever time that I have.
It may not make sense to others but that really is not my problem. I'll do
what I can to explain how I feel (see
http://www.phoenix5.org/menuRVY.html
).
I'm sorry I took so many words to explain my point but, being a writer, I
guess I still think I am paid by the word. (laugh)
I do appreciate your concern and that of others but, believe me. I am VERY
happy with my life and decisions. I don't think they are for others. Life is
not something you get from a one-size-fits-all rack.
Robert Young
Dx'd 11/23/99 PSA 1000+ Stage M1c
Webmaster Phoenix5
http://www.phoenix5.org/
To help overcome the effects of prostate cancer
Death, Grief and Responsibility
http://www.phoenix5.org/essaysry/rvycj010903DeathGrief.html
This is one of several essays from my private cancer journal. It is not
intended as anything than a record of my states of mind as I struggled with
the disease and the effects of the treatment.
1/9/03
Death is never a pleasant subject in our society, especially if we have been
diagnosed with cancer.
It can remind us of our own mortality.
Until a few days ago, the death of another has not directly touched me for
years.
Yes, I've lost good and dear friends to prostate cancer and I cried for each
one but they were hundreds or thousands of miles from my home. They were not
part of my actual, right here, every day life.
That changed a few days ago.
I was at my desk when Caren came in, carrying the cordless phone, saying that
Jack was dead. As she held the phone out to me, the world was unreal. I took
it but the tears had already started. It had been an accident, I was told, and
he was gone.
I hung up the phone and my grief poured out as Caren, also crying, embraced
me. We could say nothing but I remember her warmth and her comfort, even in
her grief. I don't know how I could have taken the news alone.
THE DAYS AFTER
Grief is grief. What crushes one might seem stupid to another, but grief
through any loss is grief. It hurts and it rips into one's Being.
As the days of loss followed, it began to dawn on me that what happened to me
with the loss of Jack could happen to my Caren. If I died, she would be thrown
into grief but who would embrace her, as she had held me? Who would cook her
meals while she -- as I had been -- was rendered useless, trying to push aside
memories and feelings that would only bring more tears.
I have privately thought about my possible death. There is no way that one
with advanced cancer can avoid the subject. So I had taken what I felt were
the mandatory steps like preparing a will and a power of attorney (steps that
anyone should take, regardless of health) but once those were done, the
thoughts about the prospect of my own demise were always about me. Would it be
easy or pain-filled? Would I be bed-ridden? How soon would I lose the ability
to write?
Sitting on my Bodhi Porch (as I like to call it), I realized how my concerns
about my death had omitted how it might affect others, starting with my Caren,
as Jack's had affected me.
ANOTHER TIME
When I created Phoenix5, early in 2000, it was going to be a site by men
(drawing on their experiences) for men with prostate cancer. Then one day I
read a message from a woman who spoke about the pain that the woman carries
silently. I printed the message out and gave it to Caren and asked if this
were true. Yes, she said, with tears in her eyes.
That was when my life (and Phoenix5) changed. I had been omitting not only my
Caren but all wives and companions from the disease. It had been about me and
I had not considered how it might affect another.
Now, sitting on the porch, I realized that I had done it again.
In every way possible, I have stressed the importance of including the
wife/woman/companion in the fight against the disease but I had not extended
it to the deep, personal grief that a companion or family member will suffer
if and when the end came. I had made a will but I had not provided for her
grief, not to mention other family.
Once again, I had been so selfishly centered on the prospect of my death --
from how to avoid it to how to face it -- that I had omitted how it might
affect others.
Realizing it and wanting to do something about it helped to lift the grief of
the last few days. It doesn't mean that I am not pained by Jack's death, but I
can learn from it and maybe do something. I don't know what to do, but I have
a responsibility to try, rather than just waiting for time to heal this grief
and -- worse -- leaving Caren to deal with her grief alone, should I die.
I think Jack would like it, that he could give again, even in my tears of his
passing.
Remembering Jack
http://www.phoenix5.org/essays2rvy/rvy010903Jack.html
1/8/03
I have lost a wonderful, loving friend.
His name was Jack and to call him a "cat" would be accurate but inadequate.
He was a big, macho Tom that was rescued from a Seattle shelter about seven
years ago. Stacy brought him home and he was such a mess. He had apparently
been hit by a car and the right side of his face was bloodied and the eye was
so swollen that someone had sewn the eyelid shut, to keep the eyeball from
popping out.
And he was thin and scrawny, showing that he had trouble living somewhere in
the streets, was my guess. There was no way he would have been adopted,
meaning he would have been killed. People don't want a half-blind cat that
looked like him.
We brought him back home and he ate a little. Then I stretched out on the
couch and laid him on my chest. He stretched out, his head towards mine.
That was how he slept with me on the couch for the next two days. I got up for
the bathroom and Stacy would bring me something to eat but for the rest of the
time, Jack was stretched out on my chest as I stroked him and reassured him
that he was safe now and everything would be okay and he started to purr. He
was so exhausted that he didn't even complain about his medicine.
As the days passed, he let me gently touch his head as I grazed a fingertip
around the wounded eye in the hope that the swelling would go down and it
slowly did. In the years that followed, the area was always overly sensitive
but we saved the eye, now a gray orb, giving him a most distinctive look.
And he also put on weight.
Maybe it was those first days on the couch but after that, Jack and I were a
pair and his favorite place to curl up was always on my chest or in the crook
of my arm and I would stroke him as I did then and he would purr.
In 1999, after the divorce, I did some traveling and finally moved to
Cincinnati, taking only Mac, a 90-pound Belgian Malinois that we had rescued.
I really couldn't travel with more animals and Mac loved the road. But Stacy
and I kept in touch.
One day she called to say that Jack had been giving her increasing trouble
since I had left. He was disappearing for days and finally bit a neighbor who
had tried to befriend him. Since I was no longer on the road and now had an
apartment, I said I would drive out and get him.
So that was how we three came to live together and it was a good arrangement.
Jack had his position as the only (Alpha by default) cat and Mac tolerated it.
One of my favorite memories of that time was all three of us going for a
walk.
There was a large, oversized parking lot at the apartment complex, with an
empty field on the other side. Jack didn't have access to the outdoors the way
he did on Vashon or in West Seattle so I began to invite him out with Mac and
me. Jack strolled along as we crossed the parking lot and moved into the
field. When it came time, I would head back and give a call and the duo would
come trotting back. I never took it as really unusual, until some people
commented they had never seen a cat taken for a walk, especially with a dog,
but that was because they had never met Jack.
CROSS-COUNTRY AGAIN
In the summer of 1999, it came time to leave Cincinnati so I packed up the
tiny Mazda, leaving room for Mac and Jack, and we headed to California.
Ever since I started traveling with Mac, Motel 6 or Red Roof Inns were our
stay of choice because they accepted pets. I felt like a traveling parent. At
each motel, I had to haul out the dishes, food and -- for Jack -- a sandbox.
Jack didn't like the travel as much as Mac, but he came to like the motels. If
we had an empty parking lot, the three of us took walks, as we had in
Columbus.
After California, it was back to Cincinnati and my life with Caren started, a
few months before my own diagnosis. Besides a young golden retriever (who fell
in love with Mac), she had a cat. Jack didn't take to that too well and like
an older brother, always found time to terrorize Flash, just to make sure that
Flash knew who was the Alpha Male in the house.
WE GET THE NEWS
Jack wasn't much of an outdoor cat. He took his meals on the front porch and
usually came back in. Sometimes he strolled off for a short spell, like a king
who visited his kingdom. We didn't know who he visited for he was always back
shortly, until Monday.
When he didn't return, I was concerned. It wasn't his routine. I made up
leaflets with photos of him, offering a $300 reward, and distributed them to
neighbors on our street and the homes that were behind us on the other street.
That was when we got the call. Caren took it and came down holding the
cordless. I could see it in her face before she said, "Jack's dead."
Even before I took the phone from her to speak to the woman on the other
street, I was crying. She knew Jack well for he had visited her often and she
found him dead, apparently hit by a car. She was so sorry, she said, for he
was such a wonderful cat.
I could barely talk and tried to thank her before hanging up and then the
grief poured from me. Caren held me while she cried too. My friend was gone
and all I could do now was cry my guts out.
THE DAYS THAT FOLLOWED
I've tried to get hold of myself and I've done pretty well but it is
especially hard when my routine crosses what would have included Jack.
The first instance was when I started to pull out two feeding bowls, one for
Jack and one for Flash, and realized that I needed only one and I began to
cry.
Even lying on the couch to watch TV can be difficult, when I remember that was
when Jack would climb up to sleep on my chest, stretched out as he had when we
spent those first few days together. It was always his favorite position.
Writing this memorial is the worst. I've been able to do it only in sections,
sometimes a paragraph at a time -- the photos were the most difficult -- for I
begin to cry too much, but I had to do it, even though I know that there are
probably only a few close friends who will read it. But that doesn't matter.
It really matters to me.
Thank you, Jack, you lovable son of a bitch. You gave me so very much. I will
see you again sometime and you can curl up in my arm as you used to.
I will always miss you and love you.
Robert
http://www.phoenix5.org/battle.html:
In every struggle the only ones who can truly grasp
your fear,
your pain,
your
grief,
your stamina that may sometimes fail
are those who share the battlefield with
you.
It is no different when the enemy is prostate cancer,
and the fight is for your integrity as a man as well as your life
This 1950 photo is us today, we men with prostate cancer.
Your fellow in this struggle,
Robert Young
Webmaster Phoenix5
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What is New in Prostate Cancer Research and
Treatment?
from the perspective of patients
This is the third feature with this title in our newsletter. The first (in the April newsletter) was based on the Abstract volume of the Annual Meeting of the American Urological Association in Chicago, and the second (in the May newsletter) on the web site of the American Cancer Society.
This one is written from the perspective of patients = us, Kees DeJong and Fran Stanton. We both are quite interested in the topic: our lives depend on it. We are ‘high-risk’ patients, also known, more ominously, as poor prognosis patients. Patients who have a PSA >20 and a Gleason Score (GS) >6 are high risk patients – we had PSAs of 24 and 157, and GS 9 and GS 8, respectively.
We both like to be well-informed about prostate cancer research and treatment for various reasons. The primary reason is one of self interest – we might benefit from our knowledge by living longer. But we also like to be well-informed because we can be of help to fellow patients. We always emphasize that patients should make any decision after discussion with their physicians, but this statement leads to our first point in ‘What is New’. Usage of over-the-counter drugs (‘food supplements’) is more extensive than it was a few years ago thanks to the Internet and Bulletin Boards: prostate cancer patients easily read about the workings of drugs, either in the petri dish (in vitro), in mice and rats (in vivo) or in patients (clinical trials). Some will discuss them with their physician but many don’t because the doctor knows very little about the subject or pooh-poohs over-the-counter medicines.
There is a rationale for this type of response from the physician: clinical trials are essential for physician-prescribed drugs, and there are no clinical trials that have demonstrated that there is an advantage of taking, for example, vitamin E. Actually there has been a vitamin E clinical trial but the results were not rock-solid and more studies (i.e., clinical trials) are necessary.
Let’s look at the details of this vitamin E trial1. A total of 29,133 male smokers in Finland were randomly assigned to take 50 mg synthetic vitamin E, 20 mg beta-carotene (substance from plants that the body converts into vitamin A), both agents, or a placebo daily for 5-8 years. The authors of the study found a 32% decrease in the incidence of prostate cancer and a 41% decrease in the mortality from prostate cancer in patients taking vitamin E compared with those not taking it. Unfortunately, another study2 concludes that vitamin E supplementation is unlikely to have a major impact on prostate cancer occurrence or progression among nonsmokers. Although the need for clinical trials is obvious, patients like to be optimistic –many take vitamin E.
At our May meeting Elyce Turba spoke about the SELECT trial that addresses the reduction in the incidence of prostate cancer in 32,400 men after taking vitamin E and selenium for many years. Another drug being studied to see whether it can prevent prostate cancer is Proscar – 18,000 men participate and the results are expected next year. More than 50,000 men are thus enrolled in clinical trials of interest mainly for those who don’t have prostate cancer. How about clinical trials for men diagnosed with prostate cancer?
We all remember the day that the urologist told us that we had prostate cancer, and said that there were three options, watchful waiting, surgery or radiation. Only clinical trials comparing those options can tell which one is best, but the results of the first of such trials were published3 only recently. In Sweden, 695 men with newly diagnosed prostate (stage T1b, T1c, or T2) were randomly assigned to watchful waiting (WW) or radical prostatectomy (RP). During a median of 6.2 years of follow-up, 62 men in the WW group and 53 in the RP group died. Death due to prostate cancer occurred in 31 of 348 of those assigned to WW (8.9 percent) and in 16 of 347 of those assigned to RP (4.6 percent).Death due to other causes occurred in 31 of 348 men in the WW group (8.9 percent) and in 37 of 347 men in the RP group (10.6 percent).The conclusion was that RP significantly reduced disease-specific mortality, but there was no significant difference between surgery and watchful waiting in terms of overall survival.
Now suppose that you decide to go for watchful waiting because you expect to live as many years as you would have lived after RP and the quality of life would be better during WW than after RP because of the risk of incontinence and impotence after surgery. Indeed, RP results in more impotence and incontinence than WW, but a study4 of the same contingent of Swedish men found that there is no difference between the two groups as far as the subjective quality of life of the two groups is concerned. A surprising result!
There has not yet been, as far as we know, a clinical trial in which patients were randomly assigned to RP, external beam radiation (EBRT), brachytherapy, or cryotherapy. Some physicians think that the physician is actually more important than the type of procedure. How to select a ‘good’ physician? Terry G. told at our May meeting that he asked his urologist in Cincinnati how many RPs he did per year. ‘20’ was the answer. Terry had his RP done in Columbus by a surgeon who did 200 RPs per year. Terry had good reasons: a recent study5 found that high-volume surgeons had half the complication risk and shorter lengths of stay compared with low-volume surgeons. Dr. Dattoli6 in Sarasota who treats hundreds of patients per year did our brachytherapy.
Although there is no particularly good reason to choose surgery instead of brachytherapy or vice versa, there are excellent reasons for some patients to select a local therapy combined with hormonal therapy (HT). EBRT combined with HT can be better (patients live longer) than EBRT alone, and RP with HT can be better than RP alone. HT should not be considered lightly – we both had it- and HT is not routinely given after each RP or EBRT. HT during and for 3 years after EBRT improved disease-free and overall survival of patients with locally advanced prostate cancer7. High risk patients like we are, or patients who have positive lymph nodes, might also benefit from EBRT + HT.
A further step is combining three different treatments: e.g., EBRT, HT & gene therapy8, or EBRT, HT and chemotherapy9. Twenty-five men with clinical Stage III positive seminal vesicles or positive lymph nodes underwent the latter protocol. After 10 years the cause specific survival was 81%, a percentage lower than that found in a study combining RP and HT10. After 10 years the cause specific survival of patients with single node positive disease was 94%. The two groups of men are not directly comparable, and we thus don’t know which the better treatment was. This difficulty of comparing groups of patients in prostate cancer studies is pervasive, and makes it difficult to draw definite conclusions.
There is, however, no doubt that the combination of RP followed by HT is a powerful one, as can be concluded from the Messing study11. After 7.1 years 3 of 47 men (6%) who received RP+HT and 18 of 51 men (35%) who received RP only had died because of prostate cancer. By the way, HT following an RP should not be confused with three months of HT preceding RP; that treatment “offers no benefit to the patient and cannot be recommended for routine clinical use”12. But four months13 might be OK!
It is obvious that patients, who decided on having a RP, would like to know whether they should, or should not receive HT after the RP. Those with more advanced disease (higher Gleason score and PSA, etc.) would more likely benefit from the combination therapy and other patients with less disease might ponder the possibility of RP alone or perhaps HT alone. That option has become quite popular, showing a major shift from the early nineties when HT was seen as the treatment for patients with metastatic cancer exclusively.
A well-known proponent of early HT is Dr. Leibowitz14, but many of his patients are T1s (DRE negative). Another physician, Dr. Fowler15, treated locally advanced prostate cancer (208 men with a median PSA of 46 ng/ml) with 1-year Lupron shots with or without an anti-androgen. The actuarial cause specific survival at 5 and 8 years was 92% and 80%, respectively, and the only tumor related variable that influenced cause specific survival in this study was the Gleason score (less than 8 versus 8 or greater). These results are good, and it is therefore surprising to see that patients in our PCNG rarely consider HT as a primary therapy, or combined with RT or RP. We have the impression that urologists (RP) and radiation oncologists (RT) just don’t like HT. HT is typically seen as the therapy given when the PSA starts rising after RP or RT. This may change in the future.
What has already changed is that those on HT can now choose between intermittent and continuous HT. One clinical trial16 comparing these two modalities demonstrated that there are equally effective – one of us (deJ) was pleased to read this. He is in his 6th cycle (onHT /offHT is one cycle), and experiences that the off periods are truly a blessing. For those interested in numbers: the average of his first five cycles was 15.9 months (8.2 months on, and 7.7 months off HT). He takes Casodex which is better tolerated than Lupron or Zoladex and has a similar survival outcome17. Casodex also preserves bone mineral density much better18 than Lupron or Zoladex. But it is expensive: almost $1,200 per month for 3x50 mg per day.
We both take several medications to strengthen the bones; they include Fosamax, Zometa and Periostat. The latter was prescribed by a dentist to battle receding gums, but in addition it kills prostate cancer cells in rats19. Strange story! We don’t know, of course, whether taking Periostat will do us any good. There are no clinical trials yet. But it feels good taking drugs that might help. That is why we take them, not because we expect miraculous healings, but because we feel good taking them.
Many of the OTC medications also kill prostate cancer cells, in vivo or in vitro. They include lycopene20 and selenium21, but also green tea with EGCG22 as its active ingredient. A clinical trial with 6 grams of green tea per day had, however, little success23 – only one of 42 patients showed a reduction of his PSA, but it was pointed out that it may not be a single agent that explains the absence of aggressive prostate cancer in Asia, but more likely a combination of two or more agents such as soy and tea24. Combining is thus good, and we conclude that eating a pizza (for the lycopene), drinking green tea (for the EGCG), followed by strawberries (lycopene) and a chocolate25 bar (for its anti-cancer properties) is a fine snack for prostate cancer patients.
Kees DeJong and Fran Stanton
References: name of first author and year of publication. The PCNG Newsletters are also on the web (www.pcngcincinnati.org), and clicking on the reference number in the web version of this article will link to the abstract of the article. ------ 1) Heinonen OP, 1998; 2) Chan JM, 1999; 3) Holmberg L, 2002; 4) Steineck G, 2002; 5) Hu JC, 2003; 6) Dattoli M, 2003; 7) Bolla M, 2002; 8) Teh BS, 2001; 9) Bagley CM, 2002; 10) Zincke H, 2001; 11) Messing EM; 1998?; 12) Aus G, 2002; 13) Noguchi M, 2002; 14) Leibowitz RL, 2001; 15) Fowler JE, 2002; 16) Tunn, UW, 2003; 17) Schellhammer PF, 2002 ; 18) Tyrrell CJ, 2003; 19) Lokeshwar BL, 2002; 20) Heber D, 2002; 21) Dong Y, 2003; 22) Gupta S, 2003; 23) Jatoi A; 2003; 24) Zhou JR, 2003; 25) Carnesecchi S, 2002
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Genetics: New research on genes linked to prostate cancer is helping scientists better understand how prostate cancer develops. Further research on these genes is expected to provide answers about the changes that lead to prostate cancer. This could make it possible to design medicines to reverse those changes. Tests to find abnormal prostate cancer genes could also help identify men at high risk who would benefit from more intensive screening or from chemoprevention trials.
What’s New
in Prostate Cancer Research and Treatment?
(adapted
from the American Cancer Society website:
www.cancer.org)
Diet and chemoprevention: Researchers continue to look for foods that increase or decrease prostate cancer risk. Scientists have found some substances (lycopenes) in tomatoes and soybeans (isoflavones) that seem to be preventive, and they are trying to develop related compounds that are even more potent and might be used as dietary supplements. Some studies suggest that certain vitamin and mineral supplements (such as vitamin E and selenium) may lower prostate cancer risk. A large study called the Selenium and Vitamin E Prostate Cancer Prevention Trial (SELECT) is still in progress. Healthy men interested in participating in this study may call Ms. Elyce Turba at (513) 872-2293 –our speaker at the May meeting- or visit the NCI website at www.cancer.gov.
Surgery: A recent surgical innovation is laparoscopic radical prostatectomy. In this technique, small incisions are made in the abdomen, through which specially designed instruments are inserted to cut out and remove the prostate. Early results of the technique appear promising, but it is not yet clear if it will offer any long-term advantages over conventional radical prostatectomy. It is not widely performed in the United States at this time.
Radiation therapy: Advances in technology are making it possible to aim radiation more precisely than in the past. Conformal radiation therapy (both 3D and IMRT) helps to treat only the prostate gland and any cancer that may have spread just outside the gland and tries as much as possible to avoid radiation to normal tissues. This is expected to increase the effectiveness and reduce the side effects of radiation therapy. Studies are underway to find out which radiation techniques are best suited for specific categories of patients with prostate cancer. For example, use of conformal radiation therapy may permit doctors to use higher radiation doses without increasing side effects.
Hormone therapy:
New drugs to block the effects of male hormones and prevent prostate cancer
growth are being developed. One such drug, abarelix,
is an LHRH antagonist. It is thought to work in a way similar to LHRH
agonists, but it appears to lower testosterone levels quicker and does not cause
tumor flare like the LHRH agonists do. It is not yet known if it will be more
effective than the LHRH agonists, but clinical trials are in
progress. Studies are also underway to find the most effective combination of
current hormonal treatments and to determine the value of using hormone therapy
before or after radiation therapy or surgery. Clinical trials of
intermittent hormone therapy are also in progress.
Scientists are also testing certain hormonal medicines as a way of reducing
prostate cancer risk. Finasteride (Proscar)
is a drug that prevents the prostate from making a special form of testosterone
called DHT. Finasteride is already used to treat
benign prostatic hyperplasia (BPH), and results from
a large clinical trial looking at whether or not it can help
prevent prostate cancer will be coming in the next few years.
A new form of hormone therapy that has been approved in several countries is the
use of high-dose bicalutamide (Casodex).
Bicalutamide is a nonsteroidal
antiandrogen medicine that is usually given in a
dose of 50 mg/day. Recent clinical trials have shown that when
bicalutamide is given at a dose of 150 mg/day it is
as effective as combined androgen blockade in controlling advanced prostate
cancer. This drug is taken by mouth, and it has potentially fewer side effects
than traditional hormone therapy.
Chemotherapy: At one time it was thought that prostate cancer was resistant to all forms of chemotherapy. However, studies in recent years have shown that some chemotherapy drugs can affect prostate cancer, even though none have yet been shown to help men live longer. Many new chemotherapy drugs are now being studied in clinical trials. Atrasentan and exisulind are 2 promising new compounds that work in slightly different ways from standard chemotherapy and seem to have some effect against prostate cancer. These and other promising agents are now being studied in clinical trials.
Prostate cancer vaccine therapy: Several types of vaccines for boosting the body’s immune response to prostate cancer cells are being tested in clinical trials. One technique removes dendritic cells (a part of the immune system) from the patient’s blood and exposes them to a component of prostate cancer cells called prostate-specific membrane antigen (PSMA). These cells then induce other immune system cells to attack the patient’s prostate cancer. Other prostate cancer vaccines use genetically modified viruses that contain prostate-specific antigen. The patient is then infected with the virus. His immune system responds to the virus and also becomes sensitized to cancer cells containing PSA and destroys these cells. At this time, prostate cancer vaccines are still largely unproven, and they are available only in clinical trials.
Angiogenesis inhibitors: Growth of prostate cancer depends on growth of blood vessels (angiogenesis) to nourish the cancer cells. Analysis of angiogenesis in prostate cancer specimens can help predict prognosis. Cancers that stimulate many new vessels to grow have a worse outlook. New drugs are being studied that may be useful in stopping prostate cancer growth by keeping new blood vessels from forming. Some antiangiogenic drugs, such as thalidomide, are already being tested in clinical trials.
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Estrogen patch may help in
advanced prostate cancer
2003-04-09 (Reuters
Health)
LONDON - Estrogen
patches like those used by menopausal women could benefit men with advanced
prostate cancer, according to a preliminary study published Wednesday.
Researchers from Hammersmith Hospital in London said that the patches are a
fraction of the cost of current hormone treatments for prostate cancer and could
save billions in worldwide costs if their benefits are confirmed in larger
trials.
"We're delighted with the results," researcher Paul Abel told Reuters Health.
"If I had prostate cancer at that stage, then I'm as sure as I can be about
anything that this is the treatment I'd have."
If the results are confirmed in larger studies, the treatment could hold real
promise for prostate cancer patients, offering an efficient, easy and
cost-effective alternative to current therapies.
Men with prostate cancer that is too advanced for surgical removal are currently
treated with drugs to control the production of testosterone or with surgical
removal of the testes, but these cause significant side effects, including
anemia, fatigue and osteoporosis.
Estrogen is also known to reduce testosterone levels, but giving the hormone
orally causes cardiovascular toxicity. The British team is the first to assess
the potential of transdermal delivery.
They treated 20 men with two or more estrogen patches, to achieve blood estrogen
levels over 1,000 pmol/L.
Within three weeks, the men saw an average reduction in prostate specific
antigen (PSA) of 95 percent -- at least as good as traditional therapy. PSA is a
marker of disease activity in prostate cancer.
Crucially, the side effects of the patches were minimal, and acceptable to the
men in the study. None of the men experienced "andropause"
symptoms like hot flushes or osteoporosis, which are experienced by 70 percent
of men given current treatments.
Gynecomastia, or enlarged breasts, caused mild to
moderate distress in 80 percent of the men, but this "wasn't really a problem"
in comparison to the debilitating side effects of other therapies, according to
Abel.
"The beauty of patch therapy is that it not only leads to disease regression, it
does so with far fewer side effects and actually improves the overall quality of
life of the patient," he said.
The patches are also cheaper than normal hormonal treatments for prostate
cancer, Abel noted. "The hormone patches cost one-tenth of current therapies
which could lead to an estimated worldwide saving of up to 2 billion pounds
($1.26 billion) compared to conventional hormone therapies," he said.
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