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Ampulla /FAP

Lastsibling

Hi, 

As an FAP sufferer, previously undergone numerous surgery complications for it. Now ampulla looks affected..

Lost my mom and my brothers and sister to fap, including younger brother cancer returned. 

Lost my father 6 months to non FAP ampulla cancer. Fast.

Guess I looked after all of them. Esp younger brother,  who I brought up when child.  

Now all alone.  I'm scared.  Possible resection by endoscopy.  Not prepared to accept open surgery again.  Nightmares before and nursed my bro through hell for 4 months.  

Is endoscopy cure. I read of return in frequent fap cases like mine. 

  1. Thanks 

  • Hi Lastsibling,

    Thanks for getting in touch. My name is Helen and I’m one of the Cancer Information Nurse Specialists. Welcome to our online community, I hope you’ll find it a supportive environment.

    I’m sorry to hear about your history of FAP (familial adenomatous polyposis) and the loss of your family members. It must be very hard for you being the last one alive.

    FAP is a disease that causes abnormal growths in the large intestine (also called the colon), rectum, and other areas. Doctors call these growths polyps. They are not cancer but can turn into cancers called periampullary neoplasia and ampullary cancer caused by FAP is one example.

    The only potentially curative treatment for ampullary cancer is surgical resection.  Pancreaticoduodenectomy (Whipple operation) is considered the standard approach for this, but endoscopic ampullectomy is a more suitable option for some people.

    It sounds like you’ve been through a lot of treatment already, so it is understandable you don’t want to have further open surgery. Unfortunately, as we don’t have access to individual’s medical details, we are unable to say which might be the best option to achieve curative results for you.

    You can speak to your nurse specialist or consultant about this further.

    It’s understandable you are worried about the recurrence of cancer linked to your FAP, especially as it has affected so many members of you close family.

    If you haven’t already had professional support with your losses, there are lots of organisations that can help.

    Cruse can offer face to face bereavement support and MIND support people with a range of help for people struggling with their emotions. You can also use the Hub of Hope (a UK-wide mental health service database) to get support that is near you.

    I hope this has been helpful.

    Kind regards 

    Helen K, Cancer Information Nurse Specialist.

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Our Ref:  HK/RH

  • in reply to Helen K- Macmillan

    Thank you Helen for your reply.  It's very appreciated  

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