My risk and a few questions

I have LCIS and ALH.  I was not offered a PBM.  I see an oncologist (as I cannot stand my breast surgeon.)  I was taking tamoxifen (stopped earlier this month.) 

I'm in the US.  When I went to a high risk clinic at a major university as a consult, they said they do offer tamoxifen to their LCIS patients.  Even the women who get tamoxifen are not seen by an oncologist, but are followed by their breast surgeon.

 RE: Risk.  At this high risk clinic, they said my risk was somewhere "between 10 and 60%, but probably closer to 10%.  To get any more accurate, they would have to look at academic journals." My oncologist gave me a risk of about 30%. I am 54 years old.  When you stick my numbers into the modified Gail model http://www.cancer.gov/bcrisktool/  and *ignore* my LCIS, you get 22%.  Go figure.  You may also want to take a look at this editorial. http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf

However, I would put a lot of stake into what your genetics councilor said.

So in the US, the use of an oncologist for high risk women probably varies from institution to institution.

It is definitely not a dumb question!!!!!

Tanya - I also am high risk due to LCIS, dense breasts and some family history. I was referred to an oncologist who strongly recommended a prophylactic bilateral mastectomy for my situation. I will probably move forward w/ the surgery this fall. However, if I had opted for the close monitoring and/or tamoxofin route, I would have continued to visit my oncologist. He would have worked in conjunction w/ my breast surgeon to coordinate my care. Hope this helps. - Jean

Hi there.  Hbn- you're right.  I never figured out how they came up with 10% either. This is an NCI certified center too.   I guess they thought this might 'reassure' me. Maybe they didn't know I've read all (at the time) some 200+ Pubmed abstracts (http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed) that come up when you put in 'LCIS'. They also seem to have misplaced this 2nd opinion - I have requested copies of it at least 5 times, including going there in person.  In addition they said I should not have a screening MRI, even a baseline one, because I have too much scar tissue.

There is another point, however.  Multiple risk factors do NOT HAVE to be additive.  In fact, for some risk factors, it looks like they are NOT (such as some risk combinations that involve alcohol consumption).  This means if factor A is 10% and factor B is 15%, your total risk may be 25%,but it may be 10%, 15% or 5% or 30%. What they have to do is look at the population of people with BOTH risk factor A and B, and find out their risk.  (This is called comparing the model to the population.)

 It is hard to say what to look for in Lobular cancer.  It is commonly known as 'the sneaky one'.  It is often found when it is larger than IDC.  However, it is often slower growing, and, maybe it may be less agressive???  (I have NOT looked at all the Pubmed abstracts for ILC.)

ILC is almost always E-cadherin negative.  E-cadherin is thought to be associated with cell adhesion.  ILC often forms sheets (thickenings), rather than the lumps found more often in IDC.  That's why it often is harder to detect.  Some women have nipple retraction, or their nipple changes direction.  Or their breast changes symmetry slightly.  A few months after my excision, I saw a shadow in my breast when I was in the bathroom with the light above the mirror that was a new phenomenon.  Eventually, it was biopsied and found to be scar tissue.

Best wishes to you.