PTEN mutation

Hi Bagpuss73 

I noticed that your post hadn't had any replies yet so I've searched the group for any previous posts which mention PTEN and found these for you to have a look through. Some are quite old but they might still provide you with some helpful information.

x

Thank you. I realise it’s not very common…

A very dear friend of mine had Cowdens Syndrome with is one of the sub-varients of PTEN.

Her son also has it - but generally it's less of an issue for men as they lack some of the organs that tend to be at risk.

Another friend - who drops by the forum occasionally - was suspected to have PTEN (she had a lot of the physical signs that would have suggested she had it) but it turned out she didn't when the tests were done.

I'm not aware that any current members have PTEN. 

There are some good PTEN groups on Facebook. 

I've written you a reply but it's disappeared into moderation so I have no idea if it's going to come through.

Thank you. I’ll have a look on Facebook and see what I can find. 

Hello just joined the group I have pten harmtona syndrome mutations of lumps linked to cancer . I have thyroid cancer had 2 lumps nodules taken out of my neck. I'm awaiting radiotherapy in April.  My condition is genetic my daughter has this as well she is 13 and has special needs. If I can help with you with anything I will try .

Hello, thanks for replying. I don't have a known PTEN mutation, but the genetics team think I do (family history of a range of cancers and I've grown a lot of polyps and other lumps). I had thyroid cancer 5 years ago and am deemed at high risk of breast and bowel cancer due to the wider family history and the probable PTEN issue. My concern is around how many people tend to get a second cancer as I'm finding all the other screening quite intense at times. I don't know anyone else out there who goes through this. I'm not sure what you're facing and I'm sorry if my message makes no sense as I've not really read much about PTEN

I do