Cowden Syndrome

Public Archive
1

Hello. I’m just back from my genetic counselling appointment. I’m going to be discussed at the team meeting tomorrow but it looks like they will put me through for testing for lynch syndrome or more likely Crowden. I just wondered if anyone else has had either syndrome diagnosed or knows more about it? Thank you x

2

Hi Janey2,

Thank you for your post. I am sure some of our users will be along to share their experiences with Cowden syndrome and show their support soon. 

In the meantime you can always post on our Ask the Nurse board or call our helpline on 0808 800 6000, who will be able to talk you through any questions you have and offer a friendly ear. The opening hours are below:

Monday-Friday, 9am-5pm
Late opening Wednesday, 9am-7pm
Saturday, 9am-1pm

Best wishes, 

Bonita 

3

Bonita. Thank you for your reply. I think it’s quite rare but it maybe something women who have had both endometrial and breast cancer may need to be aware of. I shall follow your suggestion.

4

Janey

 

on the I am recently diagnosed section, diagnosed with breast cancer there is a thread from a lady who has lynch syndrome and bc, it is about half way down on the page - lynch syndrome and diagnosed with breast cancer,  I think is the title xxx

5

Thanks Helena. It’s definitely Cowden syndrome they are looking for and not Lynch Syndrome. I did a site search for Cowden but it looks as if no one else has mentioned it on here. Xx

6

Cowden’s syndrome is definitely to watch because is has a risk to developing cancer particularly breast cancer. You should set an appointment with your and start a treatment. I hope this might help, Good Luck!

7

Thanks Flames. I’ve been told I don’t have the rogue PTEN gene thank goodness. However, they are now testing for BRCA 1 and 2. If they’re negative will possibly look at Lynch. Feeling very supported, it’s just a long waiting game! X

8

Well I’ve now been told I don’t have BRCA 1 or 2 but meeting genetics consultant in a month to discuss next tests and Cowden definitely being revisited, as I meet almost all of the diagnostic criteria, especially with the 2 primaries I had and my family history … watch this space!