Strong Family History -- on father's side

Breast cancer on my father's side. Not on my mother's side. I am BRCA1. My mother is negative for it, so it came from my father's side. There are no women for a couple of generations back. I had to do some research. When I finally found women, they all had breast cancer. Luckily none of the newer generation males every had Male breast cancer.   

It is well know that these mutations (BRCA and other recently discovered breast cancer mutations see bc.org link below) can easily be carried through the paternal side and then inherited by a woman. 

http://www.breastcancer.org/symptoms/diagnosis/oth...

There are also a number of different types of genetic testing that can be done to look for a BRCA mutation. 

http://www.facingourrisk.org/info_research/heredit...

 A physician who knows his stuff should be questioning you about your paternal as well as your maternal side.  If they are not it is a red flag and personally I would strongly consider seeing someone else.   There are other known mutation besides the BRCA mutation that are associated with breast cancer.  Doctors are also pretty sure there are also additional yet to be identified bc causing mutations. 

 Have you considered seeing a certified genetic counselor? 

http://www.facingourrisk.org/info_research/heredit...

These are the professionals who really know about testing and can help you arrange for the appropriate types of tests based on (both a maternal and paternal) family history.  The "Force" link below is a great source of information.

   www.facingourrisk.org

(I had absolutely no problem with insurance paying for my BRCA testing even through the information sent to my insurance company by my genetic counselor indicated that if a mutation was found it would most likely have been carried though my paternal line. )

I have a history of BC to beat all (every female on both sides).  I found this out overnight (I was adopted at birth) and went all TV to talk about the importance of adult adoptees to have access to their genetic history.  (MSNBC with Soledad O'Brien, etc.).  I got tested TWICE (first and second time of dx) and I'm not a carrier - despite finding out that my birthfather is.  

Then - last month, I got an extended panel.  They have discovered more BC mutations and something called BART (rearrangements) that weren't always tested in the past).  It made me feel much better to get these tests (my insurance covered them - or at least, the co is going to fight for it).  You should definitely go to a genetic counselor.  I have never heard that they don't pay for paternal side testing - BRCA can come from either side!

Deb

JudeMama - when was your BRCA testing?  It's my understanding that the knowledge of BRCA mutations being carried by males and females is fairly recent.  I posted on another thread the NCCN guidelines of when to refer a patient to a genetic counselor and they always refer to "same side" of the family, rather than maternal or paternal.  We are still in the very early stages of understanding genetic's role in cancer and a lot of primary doctors/obgyns/oncologists really don't know much about it.  There are a few known familial cancer syndromes associated with breast cancer and all but a couple are autosomal dominant - meaning you can inherit the mutation from either parent and it might cause problems for you.  I had a test out of the University of Washington (I've posted about it a lot) called the Broca Panel that looks for pretty much every known harmful mutation out there.  I have no cancer on my mother's side and only my paternal grandmother (died of liver cancer but no one knows if it was primary or mets from somewhere else) on my dad's side.  I was eligible for the testing because of my personal history of multiple cancers presenting at an unusually young age, but I had to request it from my genetic counselor after Myriad's BRCA testing - including BART - came back negative.  I know I don't know anything about your particular situation, but I wanted to share my experience.  Maybe you did have a genetic counselor guiding you and there are reasons that they felt only BRCA testing was relevant for you.  I hope you get the answers that you are seeking soon!

My family history is on my father's side, though I tested negative for BRCA. My genetic counselor requested my permission to use my genetic material for research since there are literally thousands of BC patients with a strong family history who are BRCA- and research for more genetic links is ongoing.

My onc's tx recommendations for me are the same as for someone who is BRCA+.

Leah

JudeMama,

I am glad you are pursuing testing again. A lot has definitely changed in testing since 2004...including the addition of large rearrangement testing (Myriad calls it BART, but other testing companies have similar testing). They do it now usually automatically as a reflex test if someone with strong indications of BRCA+ test negative on the BRCA1/2 panel. Very few people test + on BART/large rearrangements, but some do (seems more common to test + in it with certain ancestries). Even BRCA-testing has become more advanced in last 10 years, with more mutations known, so people who were negative years ago now sometimes test as positive.

Until there is a known mutation in the family you can test against, you are an uninformed negative. True negatives do have "average risk" (which is obviously not 0%, but that average of 12%) but us uniformed's can still be high risk. I am an uninformed negative, in that there is no identified mutation in my family (the cancer runs on my maternal side in my case but I will tell you I still had some doctors tell me there was no higher risk just because my mother, grandmother, and 2 great grandmothers all had early, aggressive BC...all but one ended up metastatic and that was the great grandmother out of the direct line, the only other female blood relative I have is a sister who is quite younger and does not have a diagnosis...I don't have aunts, etc), fortunately I did not buy that and ended up getting in touch with genetics counsellors, and a high risk clinic that were all more informed about hereditary cancer and risks).  As you have had a diagnosis (and now facing possible recurrence)  at this point I think it becomes about having as much information as you can in terms to risk of a new primary, of other cancers like ovarian, and of risk others in your family might have.