our latest newsletter - Prostate Cancer Support Northern

Prostate Cancer Support Group - Northern Beaches
Affiliated with the Prostate Cancer Foundation of Australia
Proudly sponsored by Hammond Care, Health and Hospitals Limited
A program of support serving men of all ages, their families, carers and friends
before, during and after diagnosis
Newsletter No. 145
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May 2015
Our next meeting will be held on
Tuesday, 2nd June 6:30pm
Our Guest Speaker will be Matthew Blandford - PCFA
Prostate Cancer Specialist Nurse
Everyone is welcome,
bring your partners along.
What’s in this issue
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May Meeting Report
May Meeting report
- pages 1, 2
Christmas in July
Cancer Council Research
- page 1
- page 2
Carers
Result Senate Inquiry
Norma’s Quiz
Contact Information
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page
page
page
page
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3
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Monthly meetings
All people are welcome to attend our regular monthly
meetings. No notice is required - simply come along
and introduce yourself, or contact us via the website.
When:
st
Meetings of our support group are held on the 1
Tuesday of the month except in January.
Usual Location:
The Cottage, Mona Vale Hospital, Coronation Street,
Mona Vale.
Time:
6:30pm till 8:30pm
2015
Our speaker for May is Matthew Blandford - PCFA
Prostate Cancer Specialist Nurse.
Come along and enjoy the evening
Christmas in July
th
A reminder to save the date – 7 July - for our mid
year Xmas Celebration at Dee Why RSL where we will
again be treated to a traditional Christmas Dinner,
good company and perhaps Norma’s Trivia Questions.
Our guest speaker, Alan Lawrenson, spoke to us
about his journey to find the right prostate cancer
treatment for him.
After he was diagnosed with prostate cancer he had
differing treatment options from several doctors and so
decided to find out as much as he could about which
treatments were available and what side effects each
procedure would have so that he could make the right
choice to manage his condition.
He described the ‘Cancer Anxiety Factor’ – the numb
feeling you get when you are first told you have this
cancer, the awful thoughts that cloud your judgement
when you are very vulnerable to the doctor’s advice.
He said that you have to remember that prostate
cancer is quite often a slow progressing disease and
you will have plenty of time to research your options
Alan then began looking at the different treatments
and latest research papers available. Working in
science for 46 years gave him a determination to
gather all pertinent facts before deciding on a course
of action.
He focused on three optional treatments: HIFU (High
Intensity Focused Ultrasound) which is available in
Sydney, Hyperthermia only done in Germany and
Proton Beam Therapy from which he could choose
from 15 centres worldwide. He considered all the
treatments available and the costs involved and
decided to go to Korea for Proton Beam treatment.
On the plus side there would be no infection risk, less
damage, the cost was $40,000 less that going to the
May 2015 - Newsletter of the Prostate Cancer Support Group - Northern Beaches.
Page 2 of 4 USA and he could have treatment and a holiday at the
same time.
On the minus side it was very expensive and you have
to go overseas for it, there was no Medicare
assistance and no Health Insurance to cover the
costs. He went to the “World’s Best Cancer Treatment
Centre” which was ultra modern with all the latest
equipment; all the specialists were trained in USA and
spoke perfect English. He and his wife stayed in a 5
star 2 bedroom apartment and a driver came each
morning to pick him up. He said it was the perfect
holiday environment.
After his return to Australia Alan decided to write a
book on Prostate Cancer to show to men that they
must take responsibility for their own health decisions,
get all the answers to their questions and not be
steamrolled by their doctor.
There have recently been two game-changing
developments – mpMRI – Multiparamagnetic MRI
imaging and FLA – Focal Laser Abalation.
Whilst the mpMRI has been around for a while there is
now new 3 Tesla strength units which offer higher
resolution and have better software. This is now often
used PRIOR to biopsy.
FLA was pioneered in New York by Dr Dan Sperling
and the tumours can now be selectively abalated
(destroyed) by laser under MRI guidance. This is now
available in Sydney and generally has no side effects.
Alan stressed that he is not a doctor and that the
information he gave at our meeting is not medical
advice. He has written a book ‘An ABC of Prostate
Cancer in 2015’ to help others diagnosed with prostate
cancer to be proactive in their choice of treatments.
The book is very comprehensive and lists 100
questions to ask your doctor, the very latest diagnostic
tests and ten different proven treatments.
It is written by a layman for laymen.
For more information go to www.anabcofprostatecancer.com.au
Did You Know?
Over the last five years, Cancer Council NSW has
funded over $1.4 million worth of research into
prostate cancer across four different grants. This
research has spanned basic research into the cause
of prostate cancer, diagnosis, and treatment. These
grants have produced some fascinating research. This
includes:
1) developing two new cancer treatments that appear
to have minimal side effects,
2) improving radiotherapy, and
3) investigating the relationship between prostate
cancer and sun exposure.
There are two of current studies, which highlight the
strength of the Cancer Council’s current research
efforts.
1) Living better with prostate cancer - Associate
Professor David Smith, Cancer Council NSW
Cancer Council NSW researchers are improving the
lives of men with prostate cancer by helping to
understand the risks to survivors and changing the
way it is treated.
Prostate cancer is the most common cancer in
Australia, and the number of men living with it in NSW
is predicted to double in the next five years. To
improve the lives of this rapidly rising number of men,
our world-class prostate cancer research group is
focusing on improving treatments and survival. One
research team is investigating whether participating in
a clinical practice network makes doctors more likely
to follow the extensive set of guidelines for treating
men with high-risk prostate cancer. Treatments may
be improved thanks to a national study looking at
whether mindfulness based techniques improve
outcomes for men with advanced prostate cancer.
It’s also important to understand how men respond to
cancer diagnosis. One project is analysing the
outcomes for men after being diagnosed with prostate
cancer, such as whether it increases the likelihood of
heart disease or depression. Another project is
following up a number of men to understand how their
cancer was cared for and whether Vitamin D and UV
exposure are related to the disease progressing. All of
these projects aim to substantially improve the lives of
men with prostate cancer
2) Novel strategies to overcome Docetaxel
resistance in castration-resistant prostate cancer
(CRPC) - A/Prof Lisa Horvath, Garvan Institute for
Medical Research
While localised prostate cancer is now able to be
detected and treated early, a form known as advanced
castration-resistant cancer still leads to the death of
over 2,500 Australian men each year. A chemotherapy
drug called Docetaxel is the standard treatment, but it
is only effective in around half of patients. At the
moment, there is no way to predict which cancers will
be resistant to the drug.
A/Prof Lisa Horvath and her team at the Garvan
Institute are investigating both how to identify the men
likely to be resistant to the drug and how to overcome
chemotherapy resistance. This will allow those men to
be treated with other drugs that might be more
effective. By examining two molecules associated with
Docetaxel resistance , they are hoping to identify new
drug strategies that will help Docetaxel to work more
effectively. If successful, this will help treat thousands
of cancers every year.
Carers
If you are caring for someone who has been
diagnosed with prostate cancer, you may be coming to
terms with the diagnosis and wondering how you will
care for yourself as well as your loved one during the
prostate cancer journey. Many describe it as feeling as
though they are on an emotional roller coaster. Life
may change quickly: prostate cancer can impact your
lifestyle, relationships, work and finances. You may
also find yourself taking on new roles and
responsibilities.
PCFA has published a booklet that will help you as
May 2015 – Newsletter of the Prostate Cancer Support Group – Northern Beaches
Page 3 of 4 you provide practical and emotional support for the
coming weeks, months or years. This booklet is
available at our meetings.
Everyone is different, but the following are some
common feelings and reactions of many carers:
Fear
1.Of how unwell the person you’re caring for is feeling,
2.Of not knowing enough about the treatment as
•
health professionals,
3.Being responsible for giving medications and
assisting in other ways medically,
4.Feeling like everything is out of your control,
5.Not knowing what the future holds,
6.The possibility that the person you’re caring for
could die.
Anger and frustration
1.Having to be the carer
2.The extra responsibilities and demands placed on
you
3.Family and friends not helping as much as you
would hope
4.Changes to your plans for the future
5.Not having as much time for the things you used to
enjoy
6.Feeling that the person you’re caring for doesn’t
appreciate you enough
7.A loss of intimacy.
Carers must think of themselves first, because if they
have to give up, there will be no carer.
TAKING CARE OF YOURSELF
Caring for someone with prostate cancer brings with it
lots of new demands on you. Looking after your
physical and emotional health is important to keep you
going. Some things you can do to take better care of
yourself might include:
Getting out and about: Try to continue to do
activities you enjoy.
Knowing you’re not alone: Talking to people who
understand what you’re going through, like friends,
family and support groups.
Keep healthy: Make time for regular exercise, have
regular healthy meals and get plenty of rest.
Take a break: Ask family, friends and service
providers to help you have regular breaks.
Practice relaxation: Take time to yourself everyday
to simply sit and relax or listen to some music.
Linking up with your local prostate cancer support
group: You’ll meet others in your situation who can
help you at this time. Go along, even if your partner
shows no interest. In time, when he sees the
benefits you are receiving, he may even join you.
PBAC review details, please go to the web page of
Jim Marshall at:
http://www.jimjimjimjim.com/senate.htm
That page has also has links to: YouTube video of
Jim's appearance before the Inquiry (edited), which
includes some of his testimony about the inadequacy
of the current PBAC guidelines
Submission from the Advance Prostate Cancer
Support Group
Other submissions and Jim's opening statement
Worth checking out the website – lots of useful
information - www.jimjimjimjim.com
Meetings for 2015
July 7th
Christmas in July
Dinner- Dee Why RSL
August 4th
Dr Vincent Tse - Urologist
September 1st TBA
October 6th
Research - Garvan Institute
Prof. Peter Croucher or Team Member
November 3rd Brendan Cummins - Exercise
Physiologist on Prostate Cancer
December 1st Christmas Social
Minister Sussan Ley approves PBAC review
The first result of the Senate Inquiry was the
announcement by the Minister for Health, Sussan Ley,
of a review of the Pharmaceutical Benefits Advisory
Committee (PBAC) guidelines into the affordability and
timely access to new, innovative and specialist
cancers drug in Australia.
To find links to the announcement by the Minister for
Health, Sussan Ley of the PBAC review, and the
Norma’s Quiz for May
a. What natural disaster killed 13 people in Newcastle
in December 1989?
b. What is the name of the original yellow Wiggle?
c. What Aboriginal term for a waterhole is also the
name for an Australian clothing company?
d. Which bushranger did Sydney Nolan paint into his
series of paintings of 1946 to 1947?
e. What is Australia's largest inland city?
f. Which prominent heart surgeon was murdered in
Sydney in July 4th. 1991?
g. Which former Prime Minister once managed a rock
band called The Ramrods?
h. What does ASIC stand for?
i. In which city did Australia's first legal casino open
for business in 1973?
j. What worldwide pandemic killed more than12,000
Australians in 1919?
Answers to Norma’s March Quiz
1.Which sport is featured in the films Bull Durham and A
League of Her Own? Baseball
2. What breed of dog is the star in the Beethoven films? St
Bernard
3. Which bird of prey is also known as a Fish Hawk? Osprey
4. What was the former name of the country now called
Myanmar? Burma
5. What does the S in Harry S Truman stand for? Nothing
it's only an Initial
6. Which famous pop star’s first wife was Cynthia Powell?
John Lennon
7. Simnel cake was traditionally eaten on which Sunday in
the year? Mothering Sunday
8. Who died first Gilbert or Sullivan? Sullivan
9. In which other Holy Book, besides the Bible, is there a
Garden of Eden? The Koran
10.Why did the cat sit on the computer? To keep an eye on
the mouse
May 2015 – Newsletter of the Prostate Cancer Support Group – Northern Beaches
Page 4 of 4 Publicity
Contact Us
One of the main aims of the NB Prostate Cancer
Support Group is to reach out to men and their
families and provide information and emotional
support for those diagnosed with Prostate Cancer.
PCFA Ambassador Programme we may be able to
reach more men’s groups and clubs and spread the
word about the importance of regular testing for
prostate cancer.
This year, we are hoping that with the support of the
PCFA Ambassador Programme we may be able to
reach more men’s groups and clubs and spread the
word about the importance of regular testing for
prostate cancer.
If you know of any organisations that may benefit from
having one of the Ambassador speakers visit them
please let a committee member know.
We are always seeking ways to reach the public and
articles about our Group have appeared in Pittwater
Online News and the ‘What’s on Pittwater’ website
provides information about our meetings.
Check these out at
hhttp://www.whatsonpittwater.com.au/category/comm
unity/volunteering/ and
http://www.pittwateronlinenews.com/
Please watch the media for more updates
Disclaimer
From time to time in our newsletters we provide
information about developments in the diagnosis and
treatment of prostate cancer, research articles,
documents, presentations and other interesting
materials. However, the Group's Executive and the
editor of this newsletter do not have the medical
expertise required to make an informed evaluation of
the conclusions and recommendations presented in
such materials, and we have not verified such
conclusions
and
recommendations
through
appropriately qualified medical professionals.
The information presented in this newsletter must not
be interpreted as being endorsed or recommended by
the Executive or the editor. Any recommendations
made in such materials may not be applicable in your
particular
case.
Before
implementing
any
recommendations made in the materials that are
reported, it is essential that you obtain advice from
appropriately qualified medical professionals. The
view of the Group’s Executive is that no two prostate
cancer cases are alike and that no single treatment
option is better than any other in all cases. While the
information in this newsletter should be of interest,
there is no substitute for getting informed medical
advice from your own GP, specialists and other
medical professionals.
Postal address
Northern Beaches Prostate Cancer Support Group
PO Box 324, Mona Vale, NSW 1660
Web site
Our web site provides details about the activities of the
group, meetings, contact persons and lots of other
useful information:
prostate-cancer-support-nb.net
Personal support
If you would like support, advice or assistance contact
any of the committee:
Treasurer - Alan Taylor
Phone: 02 9981 2616
Library - Ron Jones
Phone: 02 9997 2709
Programme Organiser Denise Taylor
Phone: 02 9981 2616
Catering - Jo-Ann Steeves Phone; 02 9918 6575
Eleanor Swansbra
Phone: 02 9918 6428
Norma Norman
Phone: 02 9918 4929
Committee member, newsletter editor and web site
manager:
Mary Jones
Phone: 0409 909 356
Email: [email protected]
Useful websites:
www.pcfa.org.au Telephone: 02 9438 7000
See PCFA Newsletters online at:
www.pcfa.org.au/articleLive/pages/PCFANewsletters.html
Other useful linkswww.prostatehealth.org.au
www.cancercouncil.com.au
www.andrologyaustralia.org
www.acf.com.au
Other Support Groups –
www.prostate-cancer-support-act.net
www.prostate-cancer-support-sydneynorth.org
If you are aware of news, products, publications, web
sites, services or events that may be of interest to
members of the group I’d be happy to be informed of
them. If you have received this newsletter indirectly
and would like to be emailed a copy directly please
send me an email. I’m happy to also add any of your
friends to the email list.
Past issues of our newsletters can be viewed on our
website:
www.prostate-cancer-support-nb.net
May 2015 – Newsletter of the Prostate Cancer Support Group – Northern Beaches