Fap bowelgene

Hi Cranagh

Thanks for getting in touch. Welcome to the online community.

My name is Paula and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

I can see you have joined the Bowel Cancer forum. I hope you’re finding it helpful talking to others.

I hope you’re well post Familial Adenomatous Polyposis (FAP) surgeries and continue to be regularly monitored for your condition.

It’s always difficult when you have a hereditary syndrome and the uncertainty it brings. Especially as you know the condition runs in families and can appear at a young age. From what you say, your daughter has previously been checked for the condition and the results were good which is reassuring.

Sorry to hear how difficult it has been for you trying to get hold of your GP or the hospital, but it would be worth trying again. If you’re still being monitored by a hospital team for your own condition you can also contact them to discuss your concerns. They are in an ideal position to refer your daughter to a genetics team for further testing if required.

Many parents find it difficult having conversations with their child who may be at risk of inheriting a genetic condition. There is no right or wrong answer how and when that information should be shared. Every family has a different approach.

However it’s better that your daughter hears this information from someone she trusts rather than finding out by chance from other means. You might find this link helpful to look at before you talk to your daughter. It offers useful tips and advice on how to discuss the subject with her.

You can always give us a call. On our helpline we offer a range of support where you can talk through what’s going on and how you’re feeling. If you would like to talk through your concerns, we are available 7 days a week from 8am-8pm on 0808 808 0000.

Ref: JD

We have never had my daughter referred to

gene counselling I was at one session years ago

and that was it councillor said I had ptsd dmfrom my teens but nobody offer me any help at last scope I had I couldn’t eat for weeks before and on day of scope had panic attack abd doc who reassured me it be ok wasn’t there I begged for sedation as it only way I can cope with tests but the doc in charge said wasn’t possible only gsve me light drug and it never worked until

i was home in car I remember it all

the tears and pain and now I will have to try and help

my daughter threw it all I take panic attacks then bowel

Infection  after last scope I was in hosp for week with pneumonia and bOwel

agsin I feel

rhus is happening me already as anxiety high but my own doc can’t see me have been trying last week and this week I need something to settle me before Wednesday in Belfast as I will start to cry and make it all worse 

unfevti

Hi Cranagh,

My name is Liz and I’m one of the Macmillan cancer information nurse specialists on the Macmillan Support Line.

Thank you for reaching out to us for further support, I hope you found the information, my colleague Paula posted, helpful.

I’m sorry to hear that you might be experiencing PTSD following your colonoscopy as a teenager. I can understand how seeing your daughter needing similar investigations could be very traumatic for you and increase your anxiety.

It is important that you care for yourself as this will enable you to continue caring for your daughter. That is why it’s so important for you to seek help to manage your anxiety at this time.

Although it can be difficult to speak to your GP please keep trying the surgery today. If you fail to speak to anyone then call the out of hours GP. There is also local mental health advice and support.

If at any time you feel that you are unable to keep yourself safe, you must call 999.

I hope this information has been helpful.

Take care.

Liz

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. Ref LZD/IY