October newsletter whole - Sydney Adventist Hospital

PROSTATE CANCER SUPPORT GROUP
Cancer Support Centre, Jacaranda Lodge
185 Fox Valley Road, Wahroonga NSW 2076
Proudly affiliated with
OCTOBER 2010 NEWSLETTER
REMAINDER OF OUR 2010 PROGRAMME
October
November
25
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22
December 13
Radiation Proctitis
Prof. Pierre Chapuis, Colorectal Surgeon
Support Group Discussion Meeting
Clinical Trials, Dr Gavin Marx, Medical Oncologist
Afternoon Christmas Celebration
Support Group Discussion Meetings are held at 2.30pm for 3pm on the second Monday of the
month. Our educational evening meetings where we hear from Medical Professionals start at
7pm on the fourth Monday night of the month.
Partners and families are welcome at any of our meetings.
Are you interested in taking part in a research study?
Assoc. Prof. Pauline Chiarelli is researching the following topic: “Symptoms of pelvic
floor muscle dysfunction after prostate cancer treatment”.
If you have had prostate cancer and would like to take part, evaluation study papers
are available through SAH PCSG
This research study is being conducted by the Centre for Rural Health & Community Development at the
University of South Australia and the Discipline of Physiotherapy at the University of Newcastle.
Assoc. Prof. Pauline Chiarelli spoke to us on 13 September at our afternoon meeting. Pauline reiterated “we
live on a very dry continent with a very wet population and pelvic floor exercises, before surgery, are advantageous and of course, necessary (to recover bladder control) after a radical prostatectomy”.
Pauline then gave an overview on
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•
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Lower urinary tract symptoms (LUTS)
Male pelvic floor muscles— where are they and what do they do?
Bladder training
Pelvic floor exercises for men
We were reminded about frequency, urgency, nocturia, hesitancy, intermittent stream, terminal dribble and
urinary incontinence. Associate Professor Chiarelli also indicated the value and importance of bowel and
bladder health.
It is never too late to commence pelvic floor muscle training. Pauline advised men that it is best to seek help
through a qualified male pelvic floor physiotherapist to gain best value from these exercises.
The DVD Pelvic Floor Exercises is available to borrow through prostate cancer support groups across Australia.
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Men and Sex - highlighting the lack of communication between couples
Presentation by Bettina Arndt on 27th September 2010
Report by John L Wheeler
Ms Arndt’s amusing presentation was based largely
on research she did for her two recent books, “The
Sex Diaries” and “What Men Want In Bed”. The
first was written to address the number one problem
for couples across Australia: ‘Mismatched Sexual
Desire’, generally men wanting sex more often than
their wives or partners. In a large Australian survey,
55% of women reported having low sexual desire.
In her initial project, getting 98 couples over a wide
age range to keep diaries of their sexual interaction,
she found a small number who were dealing with the
effects of treatment for prostate cancer. One couple
who had both enjoyed sex for many years were
initially devastated by the impotence that followed
treatment: “I felt like half a man”, he reported. In time
they came to enjoy non-penetrative sex but later he
purchased a dildo, which both enjoyed using.
About half her second book concerns erections
and the effects of prostate cancer treatment but her
publisher declined the idea of a title featuring
erections. Bettina told a poignant story about a man
who became impotent for medical reasons but never
discussed his problem with his wife. Rather, he
stayed up late watching TV and took other ways of
avoiding going to bed with his wife. Eventually they
divorced. Later he read “Diaries” and realised too late
that they had never even discussed means of making
love without erections.
It was strongly emphasised in the talk and in questions later that it is very important in post-treatment
rehabilitation to persist with medication or Caverject
injections and to discuss progress with one’s doctor.
Half of the men who try treatments like Viagra, Cialis
or Levitra for erectile dysfunction give up before they
find success due in part to lack of consultation with
qualified health workers. For example, a man should
try Viagra up to eight times before giving up on it.
Many women of course are quite content to give up
on intercourse and are not entirely happy when their
husbands revive their erections through Viagra or
other means. Some say that they hate the idea of an
artificially induced erection. It has to be said that
some men are insensitive to their partners once they
get this ‘new lease of life’, perhaps a couple of years
post-treatment, and ignore the fact that their partner
was enjoying the ‘outercourse’ they had in the interval
while he was without an erection. Men in middle age
may well find they need direct stimulation of the penis
to achieve erection and their wives may not like to
take on this task if they have not been communicating
well. One man reported that ‘she handled it as though
it was a death adder’.
Bettina found some female respondents who had
experienced a great sense of pain and rejection when
their husbands ceased making love. Some men take
no steps to try to regain erections, retreat from all
physical contact and simply move out into the spare
bedroom. Again and again in this presentation the
need emerged for couples to talk frankly and
acceptingly about their sexual needs and what they
are feeling emotionally. How rarely do we talk about
how the woman feels? Some say, yippee, others
desperately miss sex.
In situations where couples experience differential
desire for sex, the partner with lower libido needs to
consider what to do from the point of view of the
health and well-being of the relationship. Many men
need sex in order to express their love for their
partner, not merely to obtain sexual release. Bettina
Arndt encourages women with low desire to ‘just do
it’, seeing it perhaps as a gift for the benefit of the
relationship. There is plenty of evidence that women
can and do reach a satisfying climax without initially
feeling a desire to have sex. “Just do it” applies to
men as well as women – it means a lot to women for
their man to continue pleasuring them even though
his own desire is low. (This is an important point for
men on hormone treatment to remember when their
libido disappears as a consequence of the treatment).
Always try to put yourself in the partner’s shoes.
In response to a question on how to start communicating about sex with one’s spouse when one has not
done so for years, Ms Arndt suggested writing letters
to each other that emphasise the feelings one is
experiencing and then discussing the letters. The
more specific one can be about the emotions the
better. Consider enrolling the aid of a trusted friend
or sibling to help get one’s feelings across to one’s
spouse. Obtaining the CD of the recent ABC Radio
National “Life Matters” program featuring Dr Katelaris,
Bettina Arndt, David and Pam Sandoe and Maggie
Angus discussing it would be another useful approach. Another contributor mentioned the value of
reading the new edition of the book ‘The Joy of Sex’
by Alex Comfort and completing and discussing with
one’s spouse the short questionnaire it includes.
Bettina Arndt also recommends this book
Although the costs of breast reconstruction and
prostheses for women are partially met by the PBS,
there is no rebate available for treatments for erectile
dysfunction in men. A national campaign is needed to
bring about some equity in this situation and men and
women are encouraged to write to their MP to obtain
their support for a change in this funding.
The environment in our family of origin strongly
influences our ability to talk freely about sex with our
spouse later in life. Moreover the best safeguard
against children having sex too early in life Bettina
considers is to have the parents talking appropriately
with their children about sex from an early age.
Unfortunately it is frequently only mothers who talk to
their children about this, which leads to boys getting
the idea that men don’t talk about sex.
Thank you to Bettina for being available on the night
and for your candid and very well received
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presentation.
Want to hear more?
Check out the ABC Life Matters radio programme —
Talkback: Sex after prostate cancer which aired on 3
September 2010. It’s available to listen to from http://
www.abc.net.au/rn/lifematters/stories/2010/3000337
The program featured Dr Phillip Katelaris and author
Bettina Ardnt (pictured below), plus support group
leaders David and Pam Sandoe and Maggie Angus
from the Gold Coast Support Group for women.
FACT SHEET: VASECTOMY and
CANCER RISK
Some studies have raised questions about a possible
relationship between vasectomy (an operation to cut
or tie off the two tubes that carry sperm out of the
testicles) and the risk of developing cancer,
particularly prostate and testicular cancer.
As in America, in Australia prostate cancer is the
most common cancer in men and the second leading
cause of cancer deaths, after lung cancer. In 1993
the National Institute of Child Health and Human
Development (NICHD) convened a conference,
cosponsored by the National Cancer Institute (NCI)
and the National Institute of Diabetes and Digestive
and Kidney Diseases, to clarify the available
evidence on the relationship between vasectomy and
prostate cancer. Scientists reviewed and carefully
weighed all data available at that time, including
results from published and unpublished studies.
They determined that the results of research on the
association between vasectomy and prostate cancer
were not consistent. In addition, the scientists could
not find any convincing biological explanation for a
link between vasectomy and an increased risk of
prostate cancer. Based on these findings, the expert
panel concluded that even if having a vasectomy can
increase a man’s risk of developing prostate cancer,
the increase in risk is relatively small.
In 1997, the NCI convened the prostate cancer
Progress Review Group (PRG), a committee that
included members from the scientific, medical,
industrial, and advocacy communities. This group
was charged with developing a national plan to
outline scientific efforts involving prostate cancer
research. The PRG’s final report, published in
August 1998, concluded that the evidence supporting
a role for vasectomy in the development of prostate
cancer is weak.
Researchers continue to investigate the possible
relationship between vasectomy and prostate cancer.
The majority of studies conducted thus far have
upheld the conclusions made at the 1993 NICHD
conference. Although a few studies have reported a
link between vasectomy and prostate cancer, it is
possible that other factors, including chance, may be
responsible for the association suggested in these
studies.
The above information was taken from the
website of The National Cancer Institute:
US National Institutes of Health
www.cancer.gov
http://www.cancer.gov/cancertopics/factsheet/Risk/
vasectomy
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Barbecues at Bunnings Warehouse raise awareness of prostate cancer
During Prostate Cancer Awareness Month we
held three barbecues at Bunnings Warehouse
in Thornleigh with various volunteers in
attendance. Above, Graeme Postlethwaite and
Pam Sandoe set out PCFA materials and
prepare to field questions from the public.
Above, Margie Postlethwaite with Adele Staggs
and youngest Staggs grandson get ready to
serve at the barbecue station.
Above, Graham Staggs supervises the “action
stations” of the BBQ area. Left, Sydney Adventist
Hospital PCSG Volunteers with Bunnings staffers
to whom we owe a big ‘thank you’!
Local council Men’s Health Forum attracts key health professionals
1
2
3
At Ku-ring-gai Council’s
Men’s Health Forum on
16 September: 1. Graham
Staggs (SAH PCSG) with
guest; 2. Dr Phillip Katelaris,
Urologist, and 3. John
Brogden, Director of Lifeline.
Thank you to Ku-ring-gai
Council for organizing this
Forum.
Meet the new Manager at the Cancer Support Centre
Shirley Lofgren has joined us at Jacaranda Lodge as Manager. Shirley’s experience is extensive:
for the last nine years she has been in Case Management at the SAN, with a background in stomal
therapy. We welcome Shirley as a breath of fresh air in our midst. Shirley is ready to assist us in our
work to bring you the best of support as you tackle your prostate cancer journey, together with your
medical professionals and family. Shirley can be contacted on 02 9487 9061 or support@sah.org.au
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Unsafe consumer practices for men with sexual problems
An excerpt from “The Healthy Male”, the Newsletter of Andrology Australia, Issue 36, Spring 2010
Author: A/Professor Doug Lording (Andrology Australia & Cabrini Health) Co-authored by Dr Veronica Collins, Andrology Australia
What are potentially unsafe consumer healthcare practices?
The traditional path to seeking treatments for health conditions
is through a consultation with a health professional for a full
assessment with a view to making a diagnosis, with treatments
prescribed as needed. Although this is still the path taken by most
people, there are now many other options, some of which pose
risks to the unsuspecting patient. Men with erectile dysfunction
(ED) and other sexual problems have been targeted by various
unscrupulous practices as they tend to be particularly vulnerable.
Sexual medicine is an area of significant focus for companies selling and promoting products and services through the internet, and
for clinics that exist outside the mainstream health system using
emotive and alluring advertising. As sexual health is an
area where people can feel vulnerable, they may be attracted to
the anonymity provided by these pathways for obtaining
treatment. They can avoid the embarrassment of speaking to
health professionals about sexual problems and in some cases,
avoid scrutiny if they want to use treatments when they do not
have a specific diagnosis. The internet also offers cheaper medicines and can be very convenient. These practices expose men to
two issues: inadequate medical assessment, and exposure to
inappropriate, inactive or potentially harmful medicines.
What is the impact of bypassing health professionals?
When men bypass health professionals to obtain sexual health
treatments there can be serious health implications. For instance,
it has been well known for many years that ED often co-exists with
other health conditions such as diabetes, cholesterol problems,
hypertension or depression. Several studies have also shown that
men with ED are at higher risk of developing cardiovascular disease in the future, compared to men without ED. One study
showed that about 11% of men aged 55 years or older experienced a cardiovascular event (e.g. heart attack or stroke) within
five years of developing ED. This is the same as the risk of cardiovascular disease from having a family history of heart disease or
smoking. Other more recent studies, including one from Australia
with a broad age-range, have supported these findings and also
showed that the risk of cardiovascular disease associated with ED
(relative to that for men without ED) is greater in younger men than
older, even men in their 20s and 30s.
For men with ED who bypass consulting a health professional, the
opportunity to have an overall health assessment to identify the
presence of other co-existing conditions that may not be showing
obvious symptoms, or to discuss their risk of developing
cardiovascular disease, is missed. ED can also be associated with
relationship or emotional/psychological issues and with
significant depression. These important conditions will not be identified or addressed without a proper face to face assessment.
How many men are buying drugs on the internet?
We have all received emails advertising cheap drugs for erection
problems. It is difficult to be sure how many men purchase their
medicines in response to such advertising. One recent internetbased survey of men in the UK, Italy and Germany found that of
11,889 men who responded, 10.5% had used PDE5 inhibitors (the
main class of medicines for ED) in the past 12 months and about
one third of those men had bypassed the healthcare system—with
about half using the internet to do this.
This study confirmed the main reasons for bypassing the healthcare system related to avoiding the embarrassment of speaking to
a health professional and/or the perception that the drugs were
cheaper. Anecdotally, it appears these factors also influence
Australian men using the internet to access ED medications.
There are some legitimate cut-price Australian pharmacies that
require a prescription and may offer a good deal for men. But overseas-based pharmacies, many with sophisticated websites, are
often unreliable. Some do sell legitimate medicines, but more and
more there is evidence of significant drug counterfeiting.
Counterfeit medications: are they a big problem?
Counterfeit medication is defined as “products deliberately
and fraudulently produced and/or mislabeled with respect to
identity and/or source to make it appear to be a genuine
product”. Drugs of all kinds are subject to counterfeiting but
drugs for ED (part of the genitor-urinary category) make up
a significant proportion.
It is estimated that half a million counterfeit tablets are sold
per month in the USA and nearly half (44%) of these are
internet purchases. In Europe, between 2004 and 2008, 35.8
million tablets were seized by authorities. Studies in Europe
of seized tablets showed little of the active ingredient required
and others contained totally unrelated substances. Some
tablets contained talcum powder, paint or printer ink.
What can happen if men take counterfeit medicines?
Depending on the ingredients used in counterfeit medicines,
effects can range from no effect to death. There have been
two published reports from Asia documenting severe
hypoglycaemia (low blood sugar that can lead to coma and
even death if not treated) associated with taking counterfeit
medicines for ED or herbal remedies promoted to enhance
sexual performance.
Commercial sexual medicine clinics: are they a problem?
The promotion of sexual medicine clinics is all around us —
on billboards, in newspapers on radio, TV and the internet.
These clinics do not offer proven, effective treatments
endorsed by experts, instead offering ‘in-house’ compounded
preparations of unproven quality and efficacy. The products
are often sold on long-term contracts or at inflated cost.
What is the way forward for Australian men?
Although there has been some government scrutiny of these
practices, it remains necessary to lobby governments to
enforce laws that already exist. The reimbursement of
legitimate ED medicines through the Pharmaceutical Benefits
Scheme (PBS) could also help the situation, as the much
lower cost of medicines available over the internet is a factor
in why men choose to use them.
In the meantime, the most effective means to help men in
choosing a safe path to look after their health is through
education and raising awareness. Community education
targeted at men and women is needed to alert them to the
potential dangers in using services or pharmacies outside
the health system. If men are able to distinguish between
legitimate sources of health information, medicines and
services from those that might be either ineffective or harmful
to their health, they will be much better able to make informed
decisions. More open discussion about sexual and reproductive health could help as well as providing reliable sources of
health information and advice that men can find easily and
can understand.
Men with sexual problems should discuss their concerns
with their urologist or local GP. They should expect to have
a medical history taken, to be examined and have tests
ordered if appropriate. If medicine is needed, this should be
obtained on prescription through an Australian pharmacy.
Education of health professionals is the other side of the
equation — to allow more open discussion about sexual
health issues and to improve knowledge of health
professionals so that they feel equipped to speak to men
confidently.
Studies have reported low levels of discussion about sexual
health issues between men and health professionals.
More importantly, men would like doctors to initiate these
discussions more frequently, as they often do not raise issues
around sexual health despite having concerns.
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SAH Prostate Cancer Support Group Details - Cancer Support Centre Jacaranda Lodge
Group Leaders: David Sandoe OAM
Pam Sandoe OAM
sandoe@optusnet.com.au
Graham & Adele Staggs
gstaggs@accsoft.com.au
Graeme & MargiePostlethwaite gpostlet@bigpond.net.au
Phone: 9983 0877
Phone: 9872 2542
Cancer Support Centre:
Shirley Lofgren
support@sah.org.au
Cancer Support Centre phone number: 02 9487 9061
Useful websites:
www.prostate.org.au
www.pcfa.org.au
www.prostatehealth.org.au www.beyondblue.com.au
www.prostatecancer.com.au
www.cancercouncil.com.au
www.andrologyaustralia.org
www.apccbioresource.org.au
Useful websites USA: www.ustoo.org
www.prostatenet.org
www.pcri.org
You can find us at: www.sah.org.au. To view previous newsletters from homepage, click “View all our services”
at bottom left hand side; then click “Cancer Support”; click on Support Groups; click newsletter: click Monthly
Prostate Cancer Newsletter or the word here for previous newsletters.
It’s fast approaching that time of year again:
Movember!
Each year Movember is responsible for the sprouting of moustaches on thousands
of men’s faces in Australia and around the world, with the sole aim of raising vital
funds and awareness for men’s health, specifically prostate cancer and depression
in men.
Men sporting Movember moustaches, known as Mo Bros, become walking, talking
billboards for the 30 days of November and through their actions and words raise
awareness by prompting private and public conversation around the often ignored
issue of men’s health.
Supported by the women in their lives, Mo Sistas, Movember Mo Bros raise funds
by seeking out sponsorship for their Mo-growing efforts. The rules are simple:
Register online at Movember.com and start the month of Movember clean
shaven, before growing a Mo.
Good luck growing your mo and thank you for your support!
‘Host a BBQ for Prostate Cancer’ goes International
These young ladies work for the
Union for International Cancer
Control (UICC) in Geneva,
Switzerland. Pictured in the middle
is Aussie Vanessa Von der Muhll.
Vanessa attended the UICC
Conference in Shenzhen, China in
August and was so pleased to hear
about the concept of hosting a BBQ
for prostate cancer awareness
month, she hosted one back at her workplace in Geneva. Good on you
Vanessa! PCFA barbecue packs, including a “Host a BBQ for Prostate
Cancer” apron, tongs and stubby holder are available through PCFA.
Disclaimer: The information in this newsletter is not intended to be a substitute for professional medical advice, diagnosis or
treatment. Always seek the advice of your qualified medical professional.
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