Mom & cousin on mom's side, diagnosed at 37

The Myriad test is not comprehensive - depending on your family heritage & ethnic background, Ambry's BreastNext panel might be something the genetic counselor would suggest that your mom and/or cousin have done. Your analysis would probably wait until their results were rec'd (rule of thumb is to examine a case with confirmed diagnosis first if available). Generally, minors are looked at once they turn 18 and can independently provide informed consent.

I am so sorry to hear about the stage IV status of your mother, she's actually close to my age. As farmerlucy mentions, we have new treatment methods to utilize and I personally know of people surviving well for many years with bone or lung mets. Young onset is a possible indicator of mutation existence: insurance questions regarding screening should be fewer.

It is overwhelming to consider all the ramifications but help in understanding and making decisions is out there. Any knowledge we gather now can be useful to those who follow. Once things settle down for you, the FORCE and PROMPT study websites are good to look at in terms of information and sharing experiences others have already gone through.

Your family history is very similar to mine.  My Mom was diagnosed at Age 38 and a new primary cancer diagnosis in the other breast at Age 42.  Thankfully she has been cancer free since then and is 66 now.  I am so sorry your Mom has had to deal with ongoing recurrences.  My Mom is an only child so I have no aunts or cousins on that side of the family.  However, most of her aunts and cousins have had either breast, cervical or ovarian cancer.  There are definitely genetics at play here.  Although, like your Mom, she was tested in the 90s and came back negative for gene mutations.  Either the testing missed something or there are more gene mutations to be identified.  I was refused the option of genetic testing about 10 yrs ago because my Mom's testing was inconclusive.  I met with a genetic counsellor made the point that even if genetics were a factor for my Mom (which I am 100% certain they are) that I inherit 50% of my genes from my Dad.  So I had 50% chance of inheriting the mutation that still did not guarantee a breast cancer diagnosis, just a higher risk. 

Fast forward 10 yrs and I was diagnosed this past Fall with Grade 3 (fast growing) Stage 3a (locally advanced) triple negative breast cancer at the Age of 37.  I am currently undergoing chemo treatment after a lumpectomy.  I will then have radiation and bilateral mastectomy.  My twin sister was also diagnosed with breast cancer in January 2015.  While we don't know her exact staging as she started with chemotherapy and not surgery, there was definitely lymph node involvement and a 5cm tumor so likely the same as mine.  This was after a clear mammogram in the Fall following my diagnosis.  (She was 35 weeks pregnant at the time so they induced labour and she delivered her son 5 weeks early so she could start chemo later that week  When she found out she was pregnant, I was hoping for a girl but I'm now so thankful for that little boy!!)  I was quite certain there were genetics involved prior to my diagnosis but I am now absolutely certain.  The doctors inability to identify the gene mutation only shows how much more there is to learn in this field.

Everyone's feelings on the genetic testing and whether or not to take any proactive action are so personal and going to be based on your own experience.  I have a younger sister who is 35 and obviously very concerned.  Having grown up with a Mom who had a bilateral mastectomy with no reconstruction at my Age 13, I have never been particularly emotionally attached to my breasts.  I would have gladly done a preventative mastectomy with reconstruction had the genetic testing indicated that would be covered.  Unfortunately, it did not.  Having now suffered through some of my treatment, I told my sister that in her position I would have the preventative surgery even if the genetics cannot be identified and simply pay out of pocket.

The genetic counsellor will definitely help provide a lot of insight.  Having said that, I went to my appointment feeling certain I would one day be diagnosed with breast cancer.  The geneticist very much downplayed my risk based on the stats and I now wish I had listened to my gut and pushed for more extensive testing.  Of course, hingsight is 20/20.  Feel free to PM me or post more here with any questions.  Our situations are very similar although I certainly hope the similarities end with our Moms.         

Yes, we are definitely working on the genetics some more.  We have an appointment for the end of April.  At this point, it will make little difference except for my younger sister.  We are in Canada so the medical system is a little different but we have definitely been offered the genetic counselling, even prior to mine and my sister's diagnosises.  My younger sister is in Denmark so she has started the genetic counselling there are well.  She will be home for a visit at the end of the month and taking back my blood samples with her for testing.  Will be interesting to see which country is faster (so far it appears Denmark!) and also if they end up with any different results. 

Hoping your Mom continues to tolerate the Adriamycin and her cancer responds.  I definitely had a rough time with it but everyone is different.  And having said that, although it was tough, it was not as tough as I anticipated.