Anyone else with PTEN mutation?

Akitagirl

Hi everyone.  I received some bad news today...I do have the PTEN mutation.  BRCA1/BRCA2 are negative (praise God), but I do have the less known and less common gene mutation.  On one hand, this is good, in that it finally places into clarity several health events that have not seemed to make sense in my 42 yo life of an otherwise very healthy and active lady:  Epidermoid brain tumor x2; melanoma; stroke and probable lupus.  So, I guess it is a relief to finally validate the fact that I am not crazy and there is a cause...  However, right now my plan is for a unilateral mastectomy for my 1.8 cm IDC.  Yet research shows an 85% correlation of decreased PTEN expression with BC.  So, now I am considering bilateral mastectomy.  This is something that I was not even considering.  However, with this new twist of fate, would this be a valid course of action?  

Anyone else out there with my "interesting case" history???

P.S.  I am extremely tired of being interesting...for once, I would just like to be boring.

Akitagirl

vlnrph

So sorry you have had that many things going on: being such a cute young gal you deserve to have a few ordinary situations happen! 

There was an active thread earlier this year on the "HIgh Risk" forum talking about that gene and Cowden syndrome - you can find it by using the search function and then perhaps send private messages to some of the participants who may not see your posting here.

You could also go to the website for hereditary breast & ovarian CA run by the group called FORCE which stands for Facing Our Risk of Cancer Empowered for discussion of these issues.

Does your genetic counselor offer any support/ideas? I agree, it's not always fun to be unique or interesting but at least you have the information now and can move forward from here.

Akitagirl

Hi vlnrph - thank you very much for your kind words and your recommendations.  I will certainly look, as what I am seeing published does not look very promising.  I meet with the genetic counselor next week and have many questions...just need to know how I can live the longest and healthiest, right?

Have a wonderful weekend!