The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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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?