To excise or to not excise: the ? for newly diagnosed LCIS

leaf

Hi there Paula!  The way to PM someone is to click on their name.  In the upper right hand corner, in blue is "Send this person a message" or something to that effect.  Click on that and you can write in your personal message.

hey leaf--my oncologist also used Gail model on me! Not even an NP but an oncologist!! Why do they do that? So crazy!   It may be because there aren't (to my knowledge) any proper models for LCIS women - it is too unusual of a condition.  I would be much happier if they gave you some idea how UNCERTAIN they are about numbers that they give you.  When you compare randomly selected women with breast cancer and women without breast cancer, the Gail model, or other models that included more risk factors including breast density,  about 60% of the time the woman with breast cancer had a higher Gail score than the woman without breast cancer, but about 40% of the time, the woman withOUT breast cancer got a higher Gail score than the woman WITH breast cancer.http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf

Kimber said her onc used a Tyrer Cuzik model. http://community.breastcancer.org/forum/47/topic/744846?page=1#idx_15  I haven't found an online Tyrer Cusik model, but since it UNDOUBTEDLY has had fewer women tested with it than the Gail model, and, as this source says, all models are estimates.  I don't know what the concordance value is for the Tyrer Cuzik model.  caonline.amcancersoc.org/cgi/data/57/2/75/DC1/1

Best wishes on hashing through this and coming to a decision that is right for YOU!

Anonymous

Leaf----I haven't been able to access that Tyrer-Cuzik model either. I think I'll mention it when I go for my genetic testing in Jan and see if they have any info on it. When I was first diagnosed 6 years ago, my oncologist used the Gail model to try and assess my risk and admitted it was really just an estimate because of the LCIS.

Anne

Kimber

Hi Ladies,

It was a breast surgeon whom I saw for a 2nd opinion that did the Tyrer Cusick on me.  He said it is in a database that doctors use.  I had never heard of it, but he put all my info in the computer and then gave me the number.  He said the LCIS is what made it really jump up.  He gave me a print out....He input my age, age at 1st period, that I am nulliparous (never gave birth), my ht, my wt, if I have used HRT, and that I have had LCIS.   He makes a note of "IBIS" in his notes on my print out.  This is perhaps the study that was done or the database.  leaf may know.

 Mine came back at 91.88%.  Waaaaayyyy to high for me.  I need to move on with my life.  When I explained to  my 12 yr old daughter last night  about my upcoming surgery, she just cried and cried and said "You mean it will be OVER???"  That was worth it right there for me.

awb, your genetic counselor is going to ask you all the questions above plus many more about family history.  Be prepared when you go in.  Good luck to you!