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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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