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Information presented herein represents the experience and thoughts of our membership, and should
not be any substitute for medical counsel. Copyright 2009, IPCSG
Informed Prostate Cancer
Support Group Inc.
"A San Diego non-profit 501 c 3 Corporation ID # 54-2141691"
Welcome to IPCSG's
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Dr. Jay Cohen is a Psychiatrist and is also highly respected for his work on preventing
medication side effects about which he has published his findings in 8 books, leading medical
journals and many other publications.

After being diagnosed with prostate cancer, Dr. Cohen embarked on a journey to determine the
best course of action for his disease. In this video, Dr. Jay Cohen discusses his new book,
“Prostate Cancer Breakthroughs” which highlight the different treatment options and their side
effects.

Dr. Cohen believes that a renaissance of prostate cancer treatment advances has begun and will
continue for the many years. Some of the newest imaging techniques, Carbon 11-Acetate and
Carbon 11-Choline precisely locate cancerous areas. There are new drugs Zytiga, Xtandi and,
recently, Xofigo (Alpharadin) which are extending lives of those experiencing recurrence. Many
more are in the Pipeline.
Three “patient experts”, told of their experience in learning and making treatment decisions. Each
answered audience questions relating to their presentation.

Darrel is 73 yrs old. He had Cryoablation in May of 2013. His PSA level had been fluctuating
between 2 and 3. Shortly after beginning the testosterone replacement protocol, his PSA began to
rise. Darrel talks about how he researched his disease and how he reached his treatment decision.

Ruben is 56 years old. Prior to 2014, he had no knowledge or indication of prostate cancer. During
discussions with his doctor, he asked about low hormone levels and from that discussion they
began monitoring PSA levels. From late summer 2013 to the beginning of 2014 his PSA rose from
3.8 to 5.0. Based on results from a biopsy, Ruben looked for a support group. He found our group,
the IPCSG and received much valuable information. Ruben discusses how he went to 3 different
doctors for opinions, and based on his own research and the doctors recommendations, he decided
on a treatment.

Larry is 56 years old. He is following active surveillance rather than any invasive treatment. His
father had prostate cancer at the age of 65 treating it with radiation therapy. His father is now 80
with a very low and stable PSA. Larry was 42 at the time his father was diagnosed which caused
him to being testing his own PSA. Over the next 10 years his PSA ranged from 2.5 to 3.5. He goes
on to discuss his decisions and how is health is today.

Gene is 75 years old. His problems started with trusting his doctor’s advice and not seriously
considering alternative treatments. In his era and having been raised in a rural community, what
the doctor said was considered unquestionable. In January 2003, he had a retropubic
prostatectomy. One year later his PSA began to rise above the post-surgical less than 0.1. He went
back and read the post-surgery pathological report of the removed prostate and learned that the
cancer was already in the seminal vesicles, proving it was outside the prostate before surgery.
Gene goes on to discuss lessons learned by not being your own case manager and researching your
options.
Karen Kunz, Medical Science Liaison, Myriad Genetics spoke about the Prolaris genomic test
to help determine the risk factor of prostate cancer.

Prolaris is a prognostic test developed to assess the aggressiveness of prostate cancer by
measuring the intensity of tumor cell replication in the prostate tissue. Because the most
common hallmark of cancer and its aggressiveness is rapidly growing tumors, Prolaris directly
measures the tu-mor cell dynamics and provides an individualized score for each patient by
rigorous quantitative evaluation of the RNA expression levels of genes related to cell
proliferation.
A discussion by 2 of the groups members telling their experiences in dealing with prostate
cancer.

Leonard is 61 years old and has been dealing with PCa for 13 years. He discusses how he
was diagnosed, and what his treatment choices were. Currently his PSA is around 0.0, which
indicates his treatment option was the right one.

Paul is 68 years old. He was first diagnosed 3 years ago. During a regular physical exam the
physician was concerned that Paul’s PSA was a little high. He recommended Paul see a
Urologist. Paul tells his story of how he approached his treatment and what options were
presented to him.
Our guest speakers were A.J. Mundt, M.D., Professor and Chair, Department of Radiation Oncology
UCSD, And John P. Einck, M.D., Associate Clinical Professor Radiation Oncology UCSD.

There started by discussing the different types of radiation therapy; proton and photon. There are
many types of photon treatments which include conventional 4-field box therapy used in the ‘80’s
and ‘90’s, 3d conformal started in the ‘90’s using CT scans to design radiation fields and, more
recently, intensity modulated radiation therapy (IMRT), image guided radiation therapy (IGRT),
Cyberknife and Tomotherapy. All photon therapies use some form of x-ray. Brachytherapy is another
method which utilizes radioactive seeds implanted into the prostate.

They then went on to discuss the history of radiation therapy. Radiation was first used to treat
prostate cancer in 1909. The speakers traced the different therapy developments over time up to the
modern therapies.

This is a must view video for anyone considering radiation therapy for prostate cancer.
Dr. Richard Lam, Research Director of Prostate Oncology Specialists, spoke about androgen
deprivation therapy (ADT) and recent treatment techniques.

http://www.prostateoncology.com/about

Dr. Lam starts our giving an overview of prostate cancer growth and how the cancer becomes
resistant to hormone deprivation over time. He discusses current drugs on the market today that
target the cancer receptor, and then moves to newer drugs and some that are in clinical trials.

This is a must see video if you have prostate cancer and are managing it with ADT.
Bernadette Greenwood, Director of Clinical Services at Desert Medical Imaging which has offices in
Indian Wells, Palm Springs and Indio.

http://desertmedicalimaging.com/

Bernadette begins by tracing the history of prostate biopsies. They were first taken in the 1920’s
by transperineal needle or open perineal surgically. The first transrectal needle biopsies were
performed in the 1930’s. Transrectal ultrasonography (TRUS) assisted biopsies started in the
1960’s. In the 1980’s transducers were introduced to image the pelvic structures more clearly, PSA
testing was introduced as a means to identify the existence of cancer and a systematic biopsy
pattern was introduced.

MRI guided biopsies began in the 2000’s. In the 2010’s multiparametric (MP) MRI’s came into use.
This is mixing several parameters of images together to make a picture that is more clearly
defined.

There are 1.2 million random biopsies performed annually in the U.S. which take 6-18 cores with a
saturation biopsy taking 60+ cores.

Bernadette goes on to discuss the advantages and disadvantages of the different types of
procedures for biopsies.
Three men talked about their experiences in dealing with Prostate Cancer (PCa) and audience
questions were fielded after each presentation.

David had his first PSA test in 1997 at age 55. It was 4 and his doctor had him do a biopsy. He was
told there was evidence of PIN (pre-cancerous Dysplasia) and not to worry. Two years later his PSA
was 6 and another biopsy was performed. It was still negative except for PIN. 2 years later, he had
another biopsy, but this time cancer was detected. David goes on to explain what treatment he
decided on and why.

Ron was diagnosed with Prostate cancer six years ago. He decided on surgery and for and after his
prostate was removed, his PSA was undetectable for 10 months. But the cancer returned. Ron goes
on to talk about his decisions for further treatment and what is important for those who have had
reoccurrence of cancer.

Bill spoke of his learning he had prostate cancer and his decision to do no invasive treatment by
following Active Surveillance. In 2009 had an elevated PSA test. Bill goes on to discuss why he
chose Active Surveillance and how it is working for him.
A very meaningful presentation about case management by the Directors of the support group who
have about 60 years’ combined experience in dealing with prostate cancer.

George Johnson, Director and Facilitator of our meetings, spoke about why and how you should
manage your own case as well as what is different about dealing with prostate cancer.

Bill Manning, Director and Videographer who produces the DVD’s of our meetings, spoke about
case tracking--things you should know and measure. This included discussion of the Gleason score
and what it means as well as the importance of tracking you PSA scores over time

John Tassi, Director and Webmaster of our very informative website, spoke about the doctor
selection process and preparing for your first and follow-up doctor’s visits. He recommended
gathering your health records and maintaining active files as you proceed.

Lyle LaRosh, President, and highly knowledgeable leader of our group, spoke about biopsy factors
and determining where your cancer is. He talked of the value of imaging prior to any biopsy that
can be used to direct the biopsy rather than getting a “blind” biopsy that can miss active tumors.

Gene Van Vleet, Director and Chief Operating Officer spoke of treatment selections and
quality of life considerations. He recommended developing an understanding of the probable side
effects of each treatment type.
Dr. Ross Schwartzberg, Neuroradiologist from Imaging Healthcare Specialists, discusses
using multiparametric MRI to identify the location and extent of prostate cancer to guide the
needle biopsy.
May 2015, Dr. Ross Schwartzberg
March 2015, Members discuss Case Management
February 2015, Members Round Table
January 2015, Bernadette Greenwood
November 2014, Dr. Richard Lam
October 2014, Dr. Mundt & Dr. Einck
September 2014, Discussion by Group Members
August 2014, Karen Kunz, Myriad Genetics
May 2014, Members Round Table
June 2013, Dr. Jay Cohen
Dr. John Grimaldi speaks about options for dealing with impotence and
incontinence as well as making decisions on treatment options. It became very
apparent that he is not your usual urologist who may have protocol
restrictions to being candid or may not be able to take time to deal with you.
Dr. Grimaldi is genuinely interested in your situation. Dr. Grimaldi spends a
long time fielding questions that are pertinent to the subjects he spoke about.
July 2016, Dr. John Grimaldi