Question on calculating risk after family members PBMX

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VanillaPudding
VanillaPudding Member Posts: 36
edited July 2016 in High Risk for Breast Cancer

I have very busy breasts.  6 biopsies, all benign.  I do have many risk factors that elevate my risk though.  My question is this, how do I calculate risk when referring to family history.  My fraternal twin sister had a bilateral preventative mastectomy due to so much atypia.  She had ADH, ALH, FEA, PASH and several other findings on final pathology, but no active cancer.  She was told it was not a question of if she would get Breast Cancer, but when before making the decision.

When I complete any risk calculators, the results vary so much on whether I say yes to family history or not.  All of my reports over the years say I am high risk due to family history.  (We go to all of the same facilities.)  I am going to a large University Hospital in 2 weeks, the same place my sister had her mastectomy and am just trying to get my list of questions together.  Anyone have insight on this?

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2016

    I think only a genetics counselor can really tell you. I learned a lot from mine.

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited July 2016

    I agree. If you are concerned about your family history, you should talk to your doctor about genetic testing.  Some insurance companies will not pay for it unless your family history is significant (several breast cancers.) Other insurance companies will pick up some of the tab. Genetic testing can be very expensive. 

    I have a terrible medical family history. There are 7 cases of breast cancer in my 1st & 2nd generations, including a case of male breast cancer.  There are also another 15+ cases of other cancers, mostly colon, uterine, lung, and pancreatic cancers. I was BRCA negative, but PALB2 and Chek2 positive--my genetics counselor estimated that my risk had been 45+%, about the same as BRCA2.  I was fortunate that my insurance company didn't bat an eye at the cost.  My 23yo DD also tested positive for PALB2 and Chek2--her risk is estimated at 58+%.  Her insurance didn't pay any of it, but she applied for a hardship discount and the company (Ambry) paid the entire bill.

    I wish I had known that I had these gene mutations before. I could have had better surveillance, even a PBMX.  Best of luck you.

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