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Thunder Bay
Winter Newsletter 2014/2015
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PCCN-Thunder Bay Celebrates 20 Years
PCCN-Thunder Bay celebrated 20 years of bringing
prostate cancer awareness to Thunder Bay and
Northwestern Ontario, and of providing support to
men and their families in the city and region. A cake
to commemorate the occasion was shared with the
people attending the free public lecture by Dr. Rajiv
Singal on Thursday, September 25th at the Italian
Cultural Centre. Mayor Keith Hobbs read his proclamation of September as
Prostate Cancer Awareness Month in Thunder Bay. This occasion also marked
the first time that PCCN-Thunder Bay live streamed their meeting. Viewers
gave feedback from various parts of the Northwestern Ontario Region; Fort
Dodge, Iowa; and Courtenay, British Columbia.
185 Men Roll Up Their Sleeves
by Beth Long
PCCN-Thunder Bay sponsored their second free PSA testing
event on Sunday, September 28 at the 55 Plus Centre. One
hundred and eighty-five (185) men rolled up their sleeves
this year, surpassing the one hundred and one (101) men
who turned out last year. Lakehead Classic Cars showcased
26 of their cars, and the weather provided a pleasant
venue for viewing. Live music was provided by Phil Junnila,
Richard Pepper & Band, Flipper Flanagan’s Flat Footed
Four, and the Hilldale Boys of Hilldale Lutheran Church. For
making this another huge success, a big thank you goes to Life Labs, the
volunteers of PCCN-Thunder Bay who organized and took part in this event,
Anne Scott for her mega dozens of home-made cookies, Dr. Zaib, Lakehead
Classic Cars, all of the musicians who entertained the men and their families
as they waited to get their test, and the 55 Plus Centre. THANK YOU TEAM!
Tuesday, December 16, 2014
Event: Annual Christmas Party
Location: Main Auditorium, 55 Plus Centre, 700
River St.
Time: 6:00PM
“Prostate Cancer Detection 2014: Building from Our Experiences”
Dr. Rajiv Singal
by Beth Long
Dr. Rajiv Singal gave an excellent public presentation on Thursday,
September 25th at the Italian Cultural Centre on Prostate Cancer –
where we have been, the PSA screening dilemma, and where we are
Dr. Singal informed us that prostate cancer is always in the news, with
confusion about diagnosis and treatment. Prostate cancer is the most
common form of cancer, other than skin cancer, among Canadian
men. 1 in 7 men will be diagnosed with the disease in his lifetime. 1 in
27 will die from it, making it a significant cause of cancer-related death
in men. The challenge is to find these men and protect them.
Where We Have Been
There was a huge increase in prostate cancer diagnoses in the 1980s because of the advent of the PSA test.
Prior to PSA screening, men who were diagnosed with prostate cancer were in the more advanced stages of
the disease. As the trend shifted to early detection, there has been a decrease in mortality, and significant
progress has been made in keeping people alive.
There is much controversy in the media about the usefulness of PSA testing. The American Urological
Association (AUA) came out with a statement that reflected a very conservative approach to PSA testing.
Their study found that a significant number of men went on to have unnecessary biopsies, which pose risks, or
were over treated, which created side effects (incontinence, erectile dysfunction) that significantly impacted
their quality of life. They concluded that the potential benefit of PSA screening does not outweigh the harm.
As a result of this study, the AUA statement includes the following guidelines: screening on an individual basis
for men with high risk factors between the ages of 40 and 54; routine screening every two years for men
between the ages of 55 to 69, for whom there may be some benefit; and no routine screening for men over
70. The problem with the American Study is that it was not a long term study and a study of prostate cancer
needs to be long term because it is usually a slow growing disease.
The AUA guidelines are not the way that Prostate Cancer Canada has gone in their recommendations (see
PCCN-Thunder Bay Newsletter February 2014); nor are these the best practice guidelines of the Canadian
urological community.
The PSA Screening Dilemma
PSA is not a unique indicator of prostate cancer. An elevated PSA may be caused by other factors such as an
infection or a benign enlarged prostate. But it is the best tumour marker that we have right now.
PSA screening does work. 85% of men with prostate cancer are diagnosed in the early stages. We have a 30%
decrease in prostate cancer mortality since the advent of PSA testing. A man with an increased PSA is twice as
likely to have cancer as a woman with an abnormal mammogram. For a PSA of 4 to 10 there is a 25% chance
of prostate cancer. For a PSA greater than 10 there is a 50% risk of cancer.
On a microscopic level, the risk factor of having prostate cancer increases with age. 70% to 80% of eighty
year old men have prostate cancer and most will not necessarily know about it, and will die without it ever
becoming an issue. If this is what is going on in the background, and if 1 in 7 men are clinically detected to
have prostate cancer, and a proportion of these have “real disease” (needing treatment), the dilemma is how
do you put it all together?
“Prostate Cancer Detection 2014: Building from Our Experiences”
Dr. Rajiv Singal Continued
We need to identify meaningful disease better. There are new molecular markers being developed. There is
an engineering role for MRI in prostate cancer. It can be used as a screening tool for detection. It may be used
when there is a PSA dilemma in which the PSA is rising but the biopsy does not find disease. It may be used in
active surveillance. It may be used to improve outcomes of surgical treatment.
We need to separate diagnosis from treatment, to allow for acceptance and comfort with active surveillance.
(The goal of active surveillance is to cure when necessary but not to harm by unnecessary treatment.) This
requires rigorous counseling and education on the part of the urologist with the man and his partner.
We need to improve treatment options and lessen side effects.
Dr. Singal believes that the Melbourne Consensus Statement on Prostate Cancer Testing is the most sensible way
to proceed:
1. Age 50 to 65 PSA testing reduces cancer-specific mortality
2. Prostate Cancer diagnosis must be uncoupled from intervention
3. PSA testing not alone but as a multivariable approach
4. Baseline PSA in 40s is useful for predicting future risk
5. Older men in good health with greater than 10 year life expectancy should not be denied PSA on the
basis of age
Dr. Singal ended his presentation with a statement of the importance of the partner on the man’s cancer
journey. Having a partner leads to better decision making and better clinical outcomes. Also, the partner
provides another set of ears.
I highly recommend watching Dr. Singal’s complete lecture by going to the PCCN-Thunder Bay website and
following the instructions for watching it online. www.pccnthunderbay.org
Dr. Singal is Head of Urology at Toronto East General Hospital, has a specialty in Robotics Surgery, and is an
Assistant Professor in the Department of Surgery at the University of Toronto.
Ed Long Responds to the CTFPHC Recommendation Against PSA Test
for Screening
Honorable Eric Hoskins
Minister of Health and Long Term Care
Dear Honorable Hoskins:
I am a prostate cancer survivor and president of Prostate Cancer Canada NetworkThunder Bay.
On behalf of our support group, I take issue with the recommendation of the Canadian
Task Force on Preventive Health Care that is against using the prostate specific antigen
(PSA) test to screen for prostate cancer. At this time, it is the best screening tool
that we have. Because of PSA testing, prostate cancer mortality has been decreasing significantly since its
introduction in the 1980s. We believe that men have the right to take charge of their own health and that
means being aware of their health risks by screening and whatever tools and knowledge they need to make
informed decisions about their health and treatment. I ask you, on behalf of the men of Ontario to endorse
the recommendations of Prostate Cancer Canada that advocates in favour of screening.
Ed Long Responds to the CTFPHC Recommendation Against PSA Test
for Screening Continued
When my family doctor found that my PSA was rising at the age of 60, I was referred to a urologist. As a
result of further testing, I was found to have prostate cancer. After consultation with other specialists, I
decided on surgical treatment. Since it was diagnosed early enough, I did not need any further treatment.
My brother, who is younger than I, was diagnosed with prostate cancer this summer. His PSA was rising and
he was referred to a specialist. After an evaluation of his prostate cancer, his general health and his life style,
he decided to go with Active Surveillance. A key to this is that he has access to MRI testing. This facilitates a
close watch on any changes in his prostate that would indicate the need to begin treatment. He is getting the
information he needs to make decisions about treatment.
The CTFPHC guidelines are endorsed by the college of Family Physicians. However, there is a lack of endorsement
by specialists, who are the more knowledgeable health care professionals in the field and who provide
treatment when it is needed. Not being screened and referred on to a specialist when needed, is scary and
paternalistically prevents men from having knowledge about their health and health care decision making.
At the Prostate Cancer World Congress held in Melbourne in August 2013, a multidisciplinary group of the
world’s leading experts in this area gathered together and generated the Melbourne Consensus Guidelines.
1. Age 50-65 PSA testing reduces cancer-specific mortality
2. Prostate Cancer diagnosis must be uncoupled from intervention
3. PSA testing not alone but as part of multivariable approach
4. Baseline PSA in 40s is useful for predicting future risk
5. Older men in good health with >10 year life expectancy should not be denied PSA on the basis of age.
The Prostate Cancer Canada guidelines are in line with these guidelines.
A recent study from the United States estimated what will happen to men if the guidelines of the CTFPHC,
which are the same as those recommended in the United States, are adopted. It found that cases of metastatic
disease would double, leading to an almost 20 per cent increase in deaths from prostate cancer. If we applied
this to the estimated Canadian mortality rate from prostate cancer of 4,000 deaths a year – that’s 800 additional
dads, brothers, husbands, sons and friends who would die in Canada each year. The world has spent the last
20 years reducing the mortality rate for prostate cancer by more than 40 per cent, but these guidelines will
erase that progress and turn the clock back.
PSA is often presented in the media as a test that diagnoses prostate cancer. This is not true. It is a simple
blood test that may indicate more testing is needed. It does not provide a definitive diagnosis of prostate
cancer, but at this time it is the best screening tool that we have. It provides information that is helpful in
making decisions about further testing and/or treatment. Men have the right to all the information that they
can get to better understand their own situation and risk in order to make the best decision for themselves.
Depending on the stage and grade (aggressiveness) of their prostate cancer, some men will need to be treated
quickly and aggressively and some will be able to be watched and monitored for progression of the disease
(Active Surveillance). If we follow the recommendations of the CTFPHC and men are not routinely screened
by a PSA test, men may lack knowledge of their disease, and thus decision making about their health, and the
death rate from prostate cancer will increase again.
In September, we hosted a free PSA testing clinic, “Men Make It Happen”. 185 men came out to be tested.
That topped the 101 men who came out the first year. We request that PSA screening be endorsed and
covered by Health Ontario until a better screening tool is developed.
We need more medical research. We need to have a good way to make decisions when prostate cancer is
found. We need tests and treatments with less side effects. We need to move ahead and not backward by not
doing PSA testing.
Ed Long, President
Prostate Cancer Canada Network-Thunder Bay
Dr. Laura Curiel: Making Non-Invasive Treatment of Prostate Cancer
a Reality for Everyone
by Beth Long
Fifty people came out to hear Dr. Laura Curiel’s presentation on “Making noninvasive treatment of prostate cancer a reality for everyone” at the General
Meeting on Thursday, November 20, 2014. Dr. Curiel is an engineer who
took an interest in the direction of biomedical engineering after she lost her
grandfather to prostate cancer. She is a Research Scientist with the Thunder
Bay Regional Research Institute and an Adjunct Professor in the Department of
Electrical Engineering at Lakehead University.
Dr. Curiel’s interest is in non-invasive treatment and her research is centered
on High Intensity Focused Ultrasound (HIFU) therapy. Presently, minimally invasive procedures (tiny incisions)
include endoscopy, percutaneous surgery, laparoscopic surgery, cryosurgery, gamma camera and robotic
surgery to get to the target. HIFU has the capacity to do that without even the smallest incision. Ablatherm is
the HIFU device that Dr. Curiel works with to treat prostate cancer. It uses ultrasound to guide the treatment.
It is not completely non-invasive as the device is inserted through the rectum in order to ablate (destroy) the
diseased tissue.
What is HIFU? Dr. Curiel explained that HIFU is a medical procedure that sends high power sound waves into
the cancer tissues, increasing the energy (can raise the temperature to 80°C in seconds) until the tissues are
destroyed. It is precise in reaching its target, and there is no incision and no radiation involved. That means that
there is less discomfort for the patient and faster recovery times; the treatment can be repeated and can be
combined with other therapies; and it can be used after radiation failure.
There is a debate about HIFU treatment. It is not for everyone; the tumour needs to be localized (contained
within the prostate) with a low to intermediate Gleason Score. The cost ($30,000 in Canada) of the treatment
is not covered by provincial health care plans. There are a lot of physicians who hesitate to send patients for this
treatment because they believe that it precludes other treatments. However, this attitude is slowly changing
as more information about the procedure becomes known. Surgery and radiation can still occur after HIFU
treatment. There is a perception in the medical community that HIFU should just solve everything and attain
the same results as surgery, without the incision. Dr. Curiel believes that it should be regarded as a tool that can
treat disease for the right person, not as a solution for everyone. In Europe, it is being used as an option for
patients on watchful waiting (active surveillance).
Dr. Curiel believes there is room for improvement in HIFU therapy. It needs to become less invasive, better
guided, and there needs to be earlier detection. In her research, Dr. Curiel is focused on the pre-clinical aspect
of looking for biological markers of the tumour. Prostate cancer tumours are hard to see on an MRI. Biomarkers
would make it easier to see the tumour, provide functional information about the aggressiveness of the disease,
and aid in prescribing the right drug to treat that particular type of prostate cancer. The future lies in marrying
HIFU technology with biology so that treatment becomes more than just ablation, but includes delivery of the
drug through the body to the localized tumour with reduced toxicity to the rest of the body.
Dr. Curiel holds a PhD in Imaging and Systems from the National Institute of Applied Sciences in Lyon, France.
During her graduate research, she started working in HIFU and had the opportunity to work in the pioneering
group that developed the Ablatherm device. She participated in the development of the second generation of the
device and in the development of treatment parameters for treating patients in radiotherapy failure with HIFU.
Dr. Curiel’s presentation is available online at www.pccnthunderbay.org. Click on Events. Scroll down to Trinity
Online. Click On-Demand. Choose T.B. Prostate Cancer Society Meeting 11/20/14.
Central Canada PCa Support Group Leaders’ Retreat
by Beth Long
Ed Long, Bill Bartley, and Beth Long attended the Central
Canada PCa Support Group Leaders’ Retreat in Huntsville,
ON, from November 7 to 9, 2014. Twenty-nine delegates
representing eighteen groups participated in this retreat.
The groups represented included: PCCN groups from Barrie,
Brampton, Cornwall, Durham, Hamilton/Burlington, Hearst,
Markham Stouffville, Montreal West Island, Newmarket,
Oakville/Mississauga, Ottawa, Peterborough, Thunder Bay,
Toronto, Waterloo Wellington; the Belleville/Quinte PC
Support Group; Procure Brome-Missisquoi; and The Walnut
The retreat was made possible with sponsorship from Prostate Cancer Canada and Janssen Inc. It was
organized by Jim Dorsey, PCCN-Brampton, Walter Eadie, PCCN Oakville-Mississauga; Winston Isaac, The
Walnut Foundation; Winston Klass, PCCN Toronto and Glen Tolhurst, PCCN Waterloo-Wellington.
Dr. Winston Isaac of the Walnut Foundation expertly and graciously facilitated a free-form discussion on issues
and concerns regarding “Support Group Operations”. Dr. Isaac gave us four questions to work on in small
groups and then report back to the larger group. From this exercise, Winston gleaned ten topics for members
of the whole group to address in further depth. Individuals were invited to come forward to share their
thoughts and experiences, offer information and insights, and pose questions they were pondering regarding
the topic at hand. These ten topics were: Finance; Succession; Maintaining Interest; Membership; Media (non)
Interest; Speakers; Role of Spouses; MDs; Awareness/Action; and Use of Humour. This was a valuable exercise
for all participants as ideas and experiences were shared.
Ed Long showed the soon to be released Aboriginal DVD, “A Man’s Story”, which was produced by Jim Hyder,
PCCN-Thunder Bay. It was well received by the retreat participants and interest was expressed in obtaining the
DVD when it becomes available. This DVD will be shown at our General Meeting on Thursday, January 15, 2015.
PCC staff gave presentations at the retreat. Yaz Maziar gave an interesting presentation on “How Social Media
Can Help Support Groups” in face of the growing use of the internet by Canadians (average of 41 hours per
month). Facebook, Linkedin, Twitter, You Tube, Pinterest, Blogs, and Instagram are popular sites that support
groups might use for awareness, support, and networking. Maureen Rowlands gave an extensive presentation
on “PCC Research Programs, PCC Survivorship Programs, and Physician Engagement”. For detailed information
on Maureen’s presentation, please go to Support at www.prostatecancer.ca.
Rocco Rossi expressed that the “overriding goal of PCC is to bring an end to pain and unnecessary death of
men, and suffering of their families”. Rocco stated that we need to keep educating General Practitioners on
PSA testing. He informed us that the Advisory Board of PCCN has been disbanded. This is being replaced by
having a representative from the PCCN groups across Canada sit on the Board of Directors of PCC. Rocco is
giving the method of selection of this individual to the PCCN groups to decide. Rocco enlightened us on the
significant reduction of major funding sources for PCC. This includes Movember donations in Canada being
reduced from 100% to one-third of all donations going to PCC. (The other two-thirds go to testicular cancer
research and men’s mental health.) Also, Sobeys has taken over Safeway Canada and Safeway Canada had
had an annual campaign in support of prostate cancer research.
Michael Duench of Janssen Inc. gave a very informative presentation on the www.prostatecancermatters.ca
website that was developed by Janssen Inc. in conjunction with PCC. This website contains information, tools
and resources for men with advanced prostate cancer. He gave us an update on Zytiga. This medication has
been on the market for four years with no new side effects. Anecdotally and clinically, it has a strong positive
This leaders’ retreat was a valuable information and networking event that gave participants ideas to take
back to their home groups. It helped to allay feelings of isolation as people shared stories and lent listening
ears to each other. It provided a renewal of energy for leaders. It is agreed that we need to establish the
leaders’ retreat as an annual event. It is felt that PCC needs to stay involved as a partner in the retreats.
News From The Region
Marcel’s Morsels
by Marcel Girouard, Hearst, ON
Support Groups
Starting up prostate cancer support groups in Northwestern Ontario communities
has proven to be a challenge. PCCN-Thunder Bay, which has been at it for many
years, knows this only too well.
Hearst Cancer Survivors support group has existed for over 20 years since nurses
of the Porcupine Health Unit (PHU) first started up this group. How? Survivors and caregivers for all cancers
were invited to dinner meetings on the first Saturday of the month at a local restaurant.
The Canadian Cancer Society (CCS) provides information and support services to this group. To become
affiliated with the CCS, staff of the Family Health Team took training on how to become a support group
Since joining the Prostate Cancer Canada Network in 2010, PCCN-Hearst has received much support through
resources from Prostate Cancer Canada’s head office and from PCCN-Thunder Bay through video conferencing
with the Ontario Telemedicine Network.
Ensuring the stability of a cancer support group in a small remote community such as Hearst presents a real
challenge. By tradition, our support group meets in person. For rare cancers, the CCS provides a peer-support
person and an on-line participation group that provides outreach to a greater number of people.
Cancer patients often find that connecting with others who are going through a similar situation can help
reduce stress and improve quality of life. Support groups provide more than emotional support; they provide
resources and education as well as tips for members on how to cope.
The biggest challenge for our group is getting people who have been touched by cancer to come to our
meetings or attend our video conferences. Fewer and fewer long term survivors come to these meetings.
Newly diagnosed patients under active treatment do not consider themselves survivors and they avoid our
group meetings.
When a group has no new members, everyone in attendance knows everyone else’s situation and you tend
to become a social group. The sustainability of a support group is determined by the attraction and retention
of members. Not everyone needs a support group. In private, people who have cancer usually share personal
experiences, but in front of a group many are reluctant to talk about their cancer.
Guest speakers usually boost attendance, but in a small community without a cancer center, finding speakers
is constantly difficult.
At the Hearst Cancer Survivors’ October dinner meeting, those attending decided to suspend lunch meetings
temporarily. The current group leader, a retired PHU staffer, will contact recently diagnosed patients and try
to reorganize meetings in a different format. Individual peer-support seems to be preferred by many to a
group meeting environment. This is possible in a small community where everybody knows each other.
PCCN-Hearst will continue with the video conferences. Our group is not well known by our visiting urologist who
holds clinics in our community. One recently diagnosed prostate cancer patient who attended the September
25th live streaming presentation with Dr. Rajiv Singal, commented that his urologist never mentioned to him
that video conferences were available or that videos were available on the PCCN website.
Dr. John Oliffe, School of Nursing professor at the University of British Columbia, conducted a study of Prostate
Cancer Support Groups’ sustainability in British Columbia. Results are posted on the internet and I invite you
to read the study’s findings at www.prostatecancerhelpyourself.ubc.ca.
Visit us at pccnthunderbay.org, or look us up on Facebook.
Our newsletters are now available on our website www.pccnthunderbay.org
If you would like to receive your copy by email, please email [email protected]
Upcoming Events
Tuesday, December 16:
Annual Christmas Party. Please note that this is a Tuesday Evening.
6:00 pm. Main Auditorium at 55 Plus Centre, 700 River Street. All group
members, spouses and guests are welcome
Thursday, January 15:
Viewing of the Aboriginal DVD: “One Man’s Story”.
Produced by Jim Hyder, PCCN-Thunder Bay.
Thursday, February 19: Gary Cooper on “Organ Donors and Transplants”.
Thursday March 19:
Newsletter Committee
Email: [email protected]
Beth Long 983-2353 Brian Scott Grant & Marilyn Arnold Marcel Girouard Ed Long 983-2033
933-4214 (705) 362-8154
Board Members
Ed Long
Grant Arnold
Bill Bartley
Ray Dafoe
Jim Holmes
Bill Horde
Dennis Perron
Lorne Sampson
Contact Us
Bill Vantour
Vice President
Past President
Bob Danylko
Bob Lavoie
Lawrence Timko
Thunder Bay
1100 Memorial Avenue - Suite 374
Thunder Bay, ON P7B 4A3
[email protected]
Thunder Bay
This newsletter is produced with funds from an
unrestricted grant provided by Janssen Inc.
Thunder Bay
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