This
is the fourth step in a series aimed at helping newly diagnosed people understand
some of the basics of a complex disease. Our recommendation is that the steps
are followed in sequence - the final step after this one is TREATMENT CHOICES.
Each of these steps is linked to the next. If you missed the first three steps
go here DON'T PANIC : GOOD
NEWS! : DIAGNOSIS
SURVIVING
PROSTATE CANCER
Some
of these suggestions may seen as fairly basic and obvious, but in the rush and
scramble that often follows a diagnosis, sometimes the obvious can be overlooked.
INVOLVE
YOUR PARTNER
This
is a long road that you have started on and it is difficult in the early stages
in particular to do it on your own. It is vital to have your partner and family
on the journey with you. You should go to all medical meetings together or with
a companion. In trying to absorb and translate what is being said, you may miss
something important or misremember what was said. Take a tape into meetings, as
long as you have discussed this with the doctor and obtained his agreement.
Discuss the meeting as soon as possible and make notes. Your family will
suffer different stresses to you. Encourage them to talk to the people on our
Mentors pages. There is a special page RESOURCES
FOR THE PARTNERS OF PROSTATE CANCER MEN which may be useful. One
of the most neglected aspects of diagnosis is depression. It may be worth reading
DEPRESSION to help
you realize that you are not alone in this.
DON'T
KEEP IT SECRET
Apart
from your partner and family you should not hesitate to discuss your diagnosis
openly. Keeping it a secret makes it much more difficult to deal with. People
are usually very supportive to those diagnosed with cancer - and you will be surprised
at what you may learn. Time and again I have heard from men who have been in contact
with some of the Mentors on the site. The common theme is that they cannot believe
how generous these people are to complete strangers. The only downside is that
well meaning people may flood you with information - books, pamphlets and alternative
medicine ideas - and that can be overwhelming. So it may be best to start talking
to a few people at a time.
LOOK
FOR SUPPORT
There
is a great deal of value in joining a Support Group. A STUDY
published in 2009 sets out why this is, but perhaps the key is in this extract
from the report: "... …….the presence of healthy men at the groups provided
important "proof" and "hope" that survival was possible, regardless of the specificities
of men's PCa biomarkers." Your doctor may know of such a group or you
may get the details from your hospital or from your local newspaper. On line you
can find details of US Support Groups at US-TOO;
MALECARE; MAN
TO MAN. PSA RISING
has details of local Support Groups in many US States and internationally, such
as CPCN (CNAADA)
, PSA (UNITED KINGDOM)
, PROSTATE
CANCER FOUNDATION OF AUSTRALIA.
ANOTHER
STUDY which looked at Internet on-line support concluded:
......the
results indicate that certain members of PCa online support groups, both the patients
and their female relatives, benefit greatly in terms of positive outcomes achieved
through participation in the groups, especially in terms of improved knowledge
and confidence in dealing with the disease. In conclusion - PCa online support
groups can significantly contribute the empowerment of those patients and their
relatives who choose to participate in the online support groups.
On
the RESOURCES page, which is linked to the last page in this series, you will
find details of some of the many places on the Internet where you can talk to
people, apart from the YANA
FORUM. With the large number of people on these sites there is
a great deal of experience and you will get answers to most of your questions.
You can put your story on the site by going along to JOIN
US. This usually results in support
and offers of help from men who visit the site regularly.
TAKE
YOUR TIME
Many
medical people will urge you to immediate action but this is very rarely necessary.
Of course you must not neglect your disease. But since most Prostate Cancer is
slow growing you should have time on your side. Time to go through these steps
which we recommend and make the decision that you feel is best for you. The "window
of opportunity" is a lot larger than most people think. The tumor detected
has in all likelihood been growing for many years - a month or two is unlikely
to make any difference in outcome.
ASSESS
STATUS BEFORE DETERMINING STRATEGY
The
steps described below are all part of this process.
They will help to focus on what are considered the three most important aspects
in the successful treatment of prostate cancer:
Selection of a treatment that is most appropriate for you
Your preparation for the intended treatment
Your choice of the doctor or team most qualified to treat you throughout the course
of the illness
Medical
Oncologist Dr Stephen Strum describes in great detail how, in his opinion A
STRATEGY OF SUCCESS IN THE TREATMENT OF PROSTATE CANCER can best
be developed.
ASK
YOUR DOCTOR THESE QUESTIONS
There
are some basic questions that we suggest are answered at any meeting with doctors
for each of the treatment options they may suggest. It is a good idea to make
notes of what information you need before each appointment, so that you do not
forget any items:
What are the positives from this treatment and what is the weight of evidence
for the treatment?
What are the negatives/side effects of the treatment both long term and short
term? How do we deal with them?
Where can I go to get articles or studies that will back up the information you
are giving me?
Can you give my contact information to patients who have been treated with this
protocol and ask them to contact me to talk about their experience?
What are our other options?
Most
doctors will like the questions, because it is easier for them to deal with people
who take an interest in their diagnosis and their options. It may be worth considering
changing doctors if they don't answer the questions or object to them.
There
is a more comprehensive LIST OF QUESTIONS
that expands on these basic questions and will give you invaluable information.
Don't forget the suggestion that you should take along a tape recorder so that
you can review your discussion. You must ask the doctor's permission - and consider
the advice that, if the doctor objects to your tape recording, you might consider
find another doctor.
UNDERSTAND
YOUR DIAGNOSIS
It
is of utmost importance that you understand your diagnosis and what the terms
used mean. All of these will be foreign to you and the medical people often will
not have time to explain them all. It is also important to understand that there
is very little certainty in the process of diagnosis. The reports you will receive
will represent the interpretation of the data gathered by the tests or scans.
You might find it useful to read INTERPRETING
REPORTS
We list some of the
common terms you will come across on our DIAGNOSIS
page and give you links to find more information there. If you have not visited
there, please do so now.
COPY
YOUR MEDICAL REPORTS
Always
obtain copies of every medical report and test which you undergo. You are entitled
to these and although there may be a small charge for making copies, it is worth
paying this. Keep these reports in a safe place. Go through them thoroughly and
make sure you understand them.
Look out for typographical errors and
any personal information which you know is incorrect - they will give you a feel
for the potential for inaccuracy in other, more technical matters. Make notes
of anything you do not understand to discuss with your medical people and/or your
Mentor.
SECOND
OPINIONS
You
should get at least one other opinion on your diagnosis as a matter of course.
This is not implying that your first medical adviser lacks competence in any way.
But diagnosis is not an exact science and one opinion may differ significantly
from another. If you have not read INTERPRETING
REPORTS go along there now to gain
an understanding how differing views can be developed. Some
people suggest that a minimum of three specialists should be consulted: a surgeon/urologist;
a radiotherapist; a medical oncologist. It may be difficult to track down a medical
oncologist who is knowledgeable about primary treatment for early stage prostate
cancer. Most of the oncologists deal with late stage disease. In the majority
of cases the doctors will most likely recommend their specialty, but in doing
so they should explain clearly why they are making that recommendation over any
other.
You should certainly get another opinion if you feel you are
being pushed into a decision that you are not comfortable with or if you cannot
get satisfactory answers to your questions from your medical adviser.
GET
INFORMATION
There
is an amazing amount of information available. So much so that it will confuse
you. On the RESOURCES page, which is after the next page - Treatment Choices -
we list some sites that we think may be most useful. We try to keep this list
as up to date as possible based on feedback from Members. If you find a site not
listed which you think would be useful, please tell us.
CONSIDER
ALL TREATMENT OPTIONS
The
radical prostatectomy is often referred to as the 'gold standard' of treatment
(especially by surgeons), although this is rapidly being overtaken by what is
commonly referred to as the Da Vinci procedure - laparoscopic robotic surgery.
Surgery is closely followed by external beam radiation as being prime recommendations
for treatment. There are many variations on external beam therapies, often referred
to by their trade names.
But there are other treatment options which
you should consider. It is very important that you believe that the treatment
you select is the best one for you. This belief is one of the key
factors in survival and recovery. The next page provides a full list of choices,
including some still regarded as experimental.
DISCUSS
YOUR CHOICE
Once
you have selected a treatment which you feel will suit you best, discuss it fully
with your medical adviser. If you choose a treatment which is not regarded as
'main stream' you may encounter considerable opposition. Listen to and analyze
what is being said to you. If necessary obtain other opinions. You might find
it useful to join a Discussion List, details of which you will find at the end
of the next page - Treatment Choices.
If you have found a Mentor who
has had the same treatment as that selected by you he may be able to give you
information with which your medical adviser is not familiar.
CHANGE
YOUR LIFESTYLE
Most
people, when diagnosed with a potentially fatal disease, wonder if their behavior
was a cause of the disease and, if so, whether changing that behavior might change
the outcome or progression of the disease. Like all other aspects of prostate
cancer, there is no clear evidence of either of these issues, although there are
quite literally hundreds of thousands of sites on the Internet and books published
that present 'silver bullets' that will cure anything. Be very wary of such vendors
- they make a good deal of money out of desperate people. Dr Charles 'Snuffy'
Myers has some good basic advice in his piece COMPREHENSIVE
MANAGEMENT OF PROSTATE CANCER while the DIET
AND CANCER REPORT gives some scientifically based information about
prostate cancer and diet.
SHARE
YOUR EXPERIENCES
If
you have found this site to be of value, then others will probably do so too,
so spread the word and JOIN US
and help others on their journey. Please tell everyone on your e-mail address
list about this site - they may know someone who will benefit from visiting us.
NOW,
PLEASE CONTINUE TO THE LAST STEP IN THIS SERIES... - TREATMENT
CHOICES
