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Frequently
Asked Questions
A
F.A.Q. page with a difference, no answers yet but questions
which those with FAP would like answered if possible by the
health professionals. It is very noticeable on the FAP Forum
that most of us are asking GP's and surgeons what we should
or shouldn't be checked for and how frequently any checks
should be. The answers vary a great deal and this adds to
the confusion. You could also let me have any answers you
are given.
Perhaps
there will never be hard and fast rules but perhaps it is
time for someone to think of setting some standards for life
after initial surgery. With having had cancer I had more support
available through the cancer networks than someone who successfully
had preventative surgery. Yet our needs are very much alike
with worries about future health and finances.
Several
of the questions are from the 'ia' Forum
1.
Should I have a check for polyps in the duodenum and stomach
as a matter of routine?
2.
Whilst there are figures quoted for those with FAP amongst
Bowel Cancer Patients. Are their any figures for patients
who have had successful surgery to prevent cancer and do not
appear in those statistics.
3.
We need more help on this disease such as why do we have to
constantly have to ask for regular scopes should this not
be done automatically if they find any polyps? e.g.: every
3 months
4.
How long can you leave polyps before they turn ?
5.
Where is the support from our local doctors ?
6.
We need guidance and counselling, relatives too especially
as they are waiting to see if they have this illness ?
7.
Where is the financial help out there besides disability living
allowance which you can only receive if you cannot dress or
wash yourself ?
8.
Someone to take notice of the constant tiredness and depression
?
9.
How could a FAP Association be formed and would it be a help?
10.What
is Gardners syndrome and why does it only affect some FAP
suffers?
11.
I have FAP and have an ileostomy. What determines whether
you have Gardners?
12.
Does the where the fault in the gene occur affect the type
and severity of other problems?
13.
If I want to know what is known of my own condition in relation
to the gene should I be told?
14.
Can aching joints be part of FAP/GS?
15.
Why did I have a side viewing edoscopy scope as well as a
normal one?
16.
Are there any national guidelines for follow up checks?
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