AFTER DIAGNOSIS – How to cope and stay informed
This page is about how to
navigate doctors, specialists and the medical system in general. Where to go
for information and support. How to get
the medical care you need.
Introduction
The
period after an initial cancer diagnosis is often confusing, shocking and
scary. What follows is some information to help you navigate the medical
system, to help answer your questions and understand your feelings. It is important
to note that the better informed you are about your cancer the easier it is to
make decisions and the more likely you are to have better outcomes.
Today there is a massive amount of
information online that you can easily access, all you need is a few simple
computer skills, but don’t worry there is also help available if you wish to
simply talk to someone or read the information in a brochure.
Have a
list of questions to ask your doctor/specialist. Take an advocate with you.
Before
you visit your GP or specialist doctor it is important to make a list of
questions to ask them, as it is easy to forget them when we are there; also you
can take a pen to write notes about answers to your questions. Do not be afraid
to ask your doctor anything you do not understand and do not allow yourself to
be hurried. You can also ask your doctor to write down information about
treatments etc. It can also be useful to record the conversation with your
doctor on your phone or similar device.
It can be very helpful to take a friend,
partner, family member or support person with you to your doctors
appointments as support and a second pair of ears, if only to help you remember
all the relevant information after an appointment. This is a useful website about asking
questions of your doctor.
If you are in any doubt about any
information given to you by your doctor or specialist it’s important to know
it’s alright to double check the information you have been given with a
secondary source of your choosing and/or to get a second opinion. (Your GP can give you
a referral to any specialist you request) A second opinion can give you more
information and help you feel more confident about the treatment plan you
choose. This is a useful article on asking about your prognosis. Cancer
Survival Rates Article
Computer access and skills.
Access to a computer, tablet or
smartphone is extremely helpful in finding useful information. If you don’t
have one yourself you can go to your local library, internet cafe or find a
friend who has one. If you are able it’s a good idea to get someone to help you
improve your online search skills in order to find and evaluate the more
reliable online information. Be aware not all online information is reliable or
correct, especially from sources such as Facebook etc.
Look up
your cancer on Google or equivalent search web site.
Simply doing
a search on Google for your specific type of cancer can be very informative and
list some very good websites. There are normally specific websites for specific
cancer types. It may also be possible to find an online or email forum for your
type of cancer, these can be very informative and supportive.
It
is possible to set up your own notification system on ‘Google Alerts’ . This
will send you emails with the latest information on Google about any topic you
nominate, for instance ‘clinical trials for brain cancer’. You may need to be
quite specific. This is the web site address https://www.google.com.au/alerts
Cancer
helpline for useful info and support
The Cancer Council telephone support line on 131120 has specially trained staff available to answer your questions about cancer
and offer emotional or practical support and information.
See a
psychologist or counsellor – Don’t be afraid to seek help from a professional
to help you through the emotional roller coaster.
After a
diagnosis of cancer it is normal to be overwhelmed by many different and
complex feelings, such as fear, anger, confusion and shame. It can be very
helpful to talk to a counsellor or psychologist to guide you through this
difficult time. Your GP can help you find one and even get some free sessions
if you ask to go on a Care Plan. Here is a useful website. Feelings
and Cancer
Remember,
it’s your life, you’re in charge…….
Sometimes
it’s necessary to be assertive with GP’s, specialists and nurses, particularly if you are not getting
the treatment, respect, answers or results you need. It is perfectly ok to ask
questions, ask people to repeat things and to question if your treatment is the
best or latest available.
It can be
overwhelming in certain situations and it is important to speak up if you need
more information, or you are unsure of what is being discussed or done to you.
Your GP may not be aware of how you are feeling emotionally, it’s good to tell
them. Again a support person with you can be most helpful in these situations.
Organise help and support from family and
friends if you can.
It can be
difficult to ask for help sometimes, but it may be necessary to ask your
partner, family or friends to step up and help you. Most people are happy to
help but may not know how to. Your family may also need help with
their feelings and how best to support you.
Remember that your partner may be
struggling to cope emotionally with your diagnosis and it may be necessary to get
support outside of your relationship.
Support Groups
It can be
really beneficial to get support from a local cancer support group if you can
find one. (you can ring the Cancer Council to help you find if there are any in
your local area on 131120 ) They can be good sources of information
about local doctors, specialists and relevant medical knowledge. It can also be
great to connect with other people with cancer who really understand what you
are going through and can often help with helpful information.
If you
need financial support ask your GP or ring the Cancer Council helpline.
Cancer Organisations
There
are many cancer organisations that can be useful sources of information and
help. Here is a web site link for Australian cancer organisations. Cancer Support Organisations
Below is a list of useful Australian and overseas websites.
It is important to note that whilst Australian
websites contain specific information relevant to Australians, overseas web
sites may contain more detailed and more specific information.
·
Commonwealth Department of Health and Ageing
·
Health
Direct (Australian
Gov. Health Site)
· Lab tests and blood tests explanations
· National Centre for Cancer Survivorship
· Australian Clinical Trial Information
· Gather My
Crew - organize help
Overseas web sites
· International Agency for
Research on Cancer (IARC)
· Memorial Sloan Kettering
Hospital
· National Comprehensive Cancer
Network (NCCN)
· Union for International
Cancer Control (UICC)
·
About Cancer (UK Cancer Research)