[Hopespringpcsg] FW: [SeedPods] Ron Koster's "WELCOME NEWCOMER!"

[Glen Tolhurst]

Hi all: 
Below is a list of PCa related info and info sources.
I receive it as I signed up for Brachy therapy info which is shown as
"Seedpods".
You may wish to peruse it & subscribe to  some topics.
Take care,
Glen

-----Original Message-----
From: seedpods-bounces at prostatepointers.org
[mailto:seedpods-bounces at prostatepointers.org] On Behalf Of Nancy Peress
Sent: June 7, 2013 5:27 AM
To: nperess at charter.net
Subject: [SeedPods] Ron Koster's "WELCOME NEWCOMER!"

********** 

The SeedPods mailing list is intended for informational purposes only. Be
aware that much of the material on this list represents the opinions and
interpretations of other patients. Recommendations should NOT be regarded as
professional advice. Conduct your own research and discuss your options with
health care professionals involved in your care.

********** 

Several weeks before his death on August 11, 2005, Ron asked me to go on
sending out his weekly Welcome Newcomer message for him. It's my honor to
continue posting his message each week as one small example of his
dedication to helping men with prostate cancer. As Ron often signed his
emails, "Sometimes, it takes just one person to work a miracle." Ron was one
of the miracle workers.

Last revised and updated February 1, 2011 by Mike Scott of Prostate Cancer
International and The "New" Prostate Cancer InfoLink (with, we very much
hope, Ron's complete approval). 

=====

In spite of the fact that almost everything about prostate cancer
(PCa) is controversial, you've found an excellent source of information. Be
patient, and don't give up just because this resource may frequently be
dominated by irrelevant, repetitious, or esoteric notes which may not be
particularly helpful to the newcomer!

Risk for PCa is assessed primarily through a combination of two widely used
tests: the prostate specific antigen (PSA) test and the digital rectal exam
(DRE).

A "normal" PSA for a 50-year-old man is usually less than 2.5 ng/ml, but
there is no specific PSA value that is predictive of risk for prostate
cancer. A higher PSA level by itself does not necessarily mean that you have
PCa, and a lower PSA level does not necessarily mean that you don't have
PCa.

The DRE enables your doctor to feel the size, shape, and texture of your
prostate to determine if you have a clinically normal or abnormal prostate.
However, you can have PCa without having a palpable
("feelable") tumor, and palpable nodules or abnormalities are not always
PCa.

Even though much of the testing is extremely controversial, most PCa
survivors prefer and recommend that all men of about 40 be tested early and
regularly in the hope that early diagnosis will give greater choice of
treatment and cure with fewer side or after effects. Men with a family
history of prostate cancer or other risk factors may want to get a first
(baseline) PSA test at an even younger age.

High PSA levels may be caused by PCa, by benign prostatic hyperplasia (BPH),
or by a urinary tract infection such as prostatitis. However, NO PSA ASSAY
IS PERFECT and no specific PSA level is diagnostic for prostate cancer! At
58 years of age, when I was diagnosed, my own PSA was 3.6 ng/ml, my Gleason
score was 7, and I was subsequently shown to be pathological stage T2a
(after surgery).

Other tests which your doctor may want to perform on a blood or urine sample
(or which you can ask him to carry out) include the PSA II or Free PSA test,
which can be used to rule out prostatitis and/or benign prostatic
hyperplasia (BPH) and the so-called PCA3 test, which can help to predict
risk for more aggressive forms of prostate cancer. 
Older tests that are less commonly used today include the serum acid
phosphate test, the alkaline phosphatase test, and the prostatic acid
phosphatase (PAP) test.

The results of a PSA test and a DRE (and the PCA3 test) can be used, in
combination with information about your family history of PCa and other
medical information, to assess your risk for PCa using the "Risk of
Biopsy-Detectable Risk Calculator," which you can find at
http://deb.uthscsa.edu/URORiskCalc/Pages/uroriskcalc.jsp

The results of these tests, including a suspicious DRE, may give you and
your doctor good cause to decide you need a prostate biopsy. An initial
biopsy, today, usually consists of the removal of 8 to 12 biopsy "cores"
using a specialized procedure under transrectal ultrasound imaging.

If PCa is found in the tissue removed at biopsy, the pathologist who
examines the biopsy cores will assign what is known as a "Gleason score." It
will be someplace between 6 and 10, the higher number indicating a more
aggressive form of PCa. The Gleason score has two components, the GRADE or
PATTERN and the SUM or SCORE.  The GRADE or PATTERN is based on how the
individual cells look under the microscope.  The Gleason grades range from 1
to 5, with 1 being the closest to normal and 5 being bad. However, today, it
is normal for all biopsy-based Gleason grades to range only from 3 to 5 if
cancer is thought to be present because Gleason grades of 1 or 2 are
considered not to be cancer. There are both general and specific guidelines
for each grade, but examining prostate biopsy cores to establish the
presence of cancer and the Gleason grades of that cancer is difficult. 
The experience of the pathologist is key -- which is why a second opinion on
the biopsied tissue is often a good approach.

When the pathologist reads a specimen, s/he looks at it to determine the
most common grade of tumor seen: that is the first number of the SUM or
SCORE. Then the pathologist determines the next most common tumor area and
assigns a Gleason grade to it. This is the second number of the Gleason SUM
or SCORE. The two numbers, when added together, give the final SCORE. Close
reading of the pathology report, will often indicate both the Gleason grades
and the percentage of each grade, which may make you feel better or worse
than knowing the Gleason SUM or SCORE) -- but the Gleason SCORE is what is
reported in most of the medical literature and used for comparisons. So a
Gleason score of 3 + 4 = 7 means more grade 3 than grade 4 and a Gleason
score of 4 + 3 = 7 is just the opposite, meaning more grade 4 than grade 3.

It is VERY IMPORTANT, however, to understand that a "clean" or "negative"
pathology report of the prostatic tissue taken at a normal
8- or 12-core biopsy is no guarantee at all that PCa doesn't exist in your
prostate.

If you are diagnosed with prostate cancer, BEFORE treatment, your doctor
will also assign a CLINICAL STAGE for your cancer. This clinical stage will
normally be based on the so-called TNM staging system, where T refers to the
primary tumor (in your prostate), N refers to the evidence that there may be
cancer that has extended to your lymph nodes, and M refers to the evidence
that the cancer has metastasized (spread) to other areas in your body
(usually, at first, bones like your hips and your spine).

The following is the standard (AJCC) CLINICAL staging nomenclature for
prostate cancer, last updated in 2002:

Primary Tumor (T)

TX     Primary tumor cannot be assessed

T0     No evidence of primary tumor

T1     Clinically inapparent tumor not palpable nor visible by imaging

T1a    Tumor incidental histologic finding in 5% or less of tissue 
resected by TURP.

T1b    Tumor incidental histologic finding in more than 5% of tissue 
resected by TURP.

T1c    Tumor identified by needle biopsy (e.g. because of elevated PSA)

T2     Palpable tumor but confined within the prostate

T2a    Tumor involves one half of one lobe or less.

T2b    Tumor involves more than half one lobe, but not both lobes.

T2c    The tumor involves both lobes.

T3     Tumor extends through the prostatic capsule

T3a    Extracapsular extension on one or both sides of the prostate

T3b    Tumor invades one or both the seminal vesicles

T4     Tumor is fixed to or invades adjacent structures other than 
seminal vesicles


Regional Lymph Nodes (N)

NX     Regional lymph nodes cannot be assessed

N0     No regional lymph node metastasis

N1     Metastasis in a single lymph node, 2 cm or smaller

N2     Metastasis to one or more lymph nodes 2 cm or larger, but none 
larger than  5 cm in greatest diameter

N3     Metastasis to a lymph node greater than 5 cm in greatest diameter.


Distant Metastasis (M)

MX     Distant metastasis cannot be assessed

M0     No distant metastasis

M1     Distant metastasis to any site

M1a    Distant metastasis to non-regional lymph nodes

M1b    Distant metastasis to the bone(s)


You should know that if you decide to have a surgical treatment for your
prostate cancer, then it will be possible for your surgeon to obtain a
post-surgical PATHOLOGICAL stage for your prostate cancer which will usually
be slightly different that the CLINICAL stage. 
Pathological staging is only possibly after surgical treatment.

If you are initially shown to have prostate cancer on a biopsy, your doctor
may want you to have one or more imaging tests to try to identify whether
your cancer has escaped from the prostate
(metastasized) to other parts of your pelvic region or even to other organs.
These imaging tests can include color Doppler ultrasound scans, computerized
tomography (CT) scans, magnetic resonance imaging
(MRI) scans, bone scans, and the ProstaScint test. Some of these tests
involve injecting a radioisotope into the blood-stream. Absolutely none of
these tests or procedures is 100% accurate.

PCa is generally treated by three kinds of doctors: You probably saw a
UROLOGIST first. If the diagnosis indicates that the cancer has not escaped
the gland, it would be wise for you to see a RADIATION ONCOLOGIST for a
second opinion.  If the cancer has escaped the gland, a MEDICAL ONCOLOGIST
might be the source of a second opinion. Some patients seek a medical
oncologist for another opinion even though the cancer has not escaped the
gland -- sort of a "neutral," professional opinion.

You're lucky to have found this source of information before you, your
friend or your relative has submitted to therapy. Even though you may be
"anxious" to "get on with it", you can postpone treatment for a brief period
until you have done your home work, because you need to know everything you
can about each of the possible PCa treatment modalities.

The first group of treatments is used most commonly for men with so-called
"localized prostate cancer" that is confined to the prostate itself or
possibly to the prostate and the immediately nearby tissues:

- Active surveillance or watchful waiting (sometimes called "expectant
management")

- Dietary, nutritional, and other forms of non-interventional "alternative"
therapy (potentially including acupuncture, nutritional and/or herbal
supplements, Essiac and green teas, positive mental attitude,  meditation,
visualization, spiritual healing, humor, and prayer)

- Proton Beam Radiation Therapy or "PBRT"

- "Brachytherapy" using either permanent radioactive implants (often
referred to as "seed implants", or "SI"), or temporary radioactive implants
(often referred to as "high dose radiation", or HDR")

- Various other types of photon-based "external beam" radiation, including
Intensity Modulated Radiation Therapy (IMRT), Image-Guided Radiation Therapy
(IGRT), CyberKnife therapy, and others

- The different types of surgical treatment ("radical prostatectomy"), which
come in four basic categories: radical retropubic prostatectomy (RRP),
radical perineal prostatectomy (RPP), laparoscopic radical prostatectomy
(LRP), and robot-assisted laparoscopic prostatectomy (RALP)

- "Cryosurgery" (also known as "cryoablation")

- High-intensity focused ultrasound (which has not yet been approved for use
in the USA but is available in other countries from American-based
physicians)

- Limited forms of hormone therapy using drugs like LHRH agonists,
antiandrogens, and 5-alpha-reductase inhibitors either alone or in
combination with other types of therapy, often for limited periods of time

The second group of treatments is more customary for men with more advanced
forms of prostate cancer:

- Long-term continuous or "intermittent" hormone therapies of various types,
including single-drug androgen deprivation therapy (ADT) and more complex
forms of ADT based on combinations of two or three hormonal drugs

-	Immunotherapy, which is currently only available using one specific 
type of cancer "vaccine"

- Chemotherapy, initially and usually using a docetaxel-based
(Taxotere-based) drug regimen

- Dietary, nutritional, and other forms of non-interventional "alternative"
therapy (see above)

- True "watchful waiting" in which therapy is avoided until symptoms need to
be treated

- Investigational drugs and drug combinations that are being tested in
clinical trials (and there are now a LOT of these)

We can help you learn more about this disease we call our hobby. The
diagnosis of PCa (like the diagnosis of many other cancers) is almost always
accompanied by the FUD factor -- FEAR, UNCERTAINTY, and DOUBT! 
You can get rid of the FUD factor by taking charge; learn all you can learn,
so that YOU can decide which therapy YOU want.

A whole slew of very good books about PCa has been published over the years.
I know of NO "perfect" book. However, if you read these two I think you will
be able to get a good and balanced view about nearly all of the available
options:

- "A Primer on Prostate Cancer: The Empowered Patient's Guide," 2nd edition,
by Stephen B. Strum, MD, and Donna Pogliano (published by the Life Extension
Foundation in 2005)

- "Winning the Battle Against Prostate Cancer," by Gerald Chodak, MD
(published by Demos Health in 2011)

The former is a little outdated but contains lots of really valuable
information. The latter is new and the author has made a significant attempt
to base his suggestions and comments on sound, published data as opposed to
professional or personal opinion.

I also recommend "Saving Your Sex Life: A Guide for Men with Prostate
Cancer," by John P. Mulhall, MD (first published by Hilton Publishing in
2008 and reprinted by CIACT Publishing in 2011). It will tell you nothing at
all about how to treat your cancer, but a lot about how to deal with one of
the most worrisome consequences of such treatment.

Of the many, many other books available -- some are excellent, but may focus
on recommending a specific type of therapy; others include misinformation;
and then there are the books that are scary enough to make you want to "take
the pipe" rather than treatment.

After you've decided on the therapy of YOUR choice, you should seek the most
skilled, experienced practitioner available.  Most survivors agree that no
matter what therapy YOU choose, you should do your homework and be assured
that the contemplated practitioner has done several hundred successful
procedures.  There are individual physicians who are highly specialized in
all of the techniques listed above, and other survivors will be happy to
give you specific recommendations, but ALWAYS remember that what worked for
other individuals may not work for or even be appropriate for you.

A listing of PCa SUPPORT GROUPS is available at several PCa Internet sites.
Most of the groups can be very helpful. Like doctors, you'll be more
comfortable with some groups than others. In addition, there are now several
"on line" chat rooms and related support systems that use interactive
Web-based technology where you can "meet" with survivors, physicians, and
others willing to share their expertise.

When you are aware of all the appropriate PCa treatment options, the chances
for cure, recurrence, survival, and their side/after effects, and you've
confirmed that information with other doctors, and men in support groups,
you may be ready to proceed. If not, don't be bashful, come back, share more
of your concerns and ask us more questions.

Finally, don't waste a good opportunity to listen and ask questions when
you're talking with a medical professional.  Use a good tape recorder to
take notes every time you meet with a doctor, so that both you and your
partner are not pre-occupied with note-taking. 
Participate in the discussion, and be sure you understand everything being
said.  You'll be glad for the opportunity to review the consultation --
probably several times -- before you determine your treatment strategy.

Ron Koster, from the foothills of the Catskills


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