Angelina Jolie's prophylactic surgery

25% of brca2's are TN also.  Keeping breasts or Tamoxifen?  After being on an AI for 10 months, forget the Tamoxifen choice if anything like AIs...the SE's can be pretty miserable.  Other than that, I can't imagine "waiting for cancer."  Basically, that is all one is doing, statistically.  Catching it early does not guarantee anything. (Ok, stating the obvious for most of us.)

Susan - the prophy concept is difficult to phathom for many, including myself.  Before I was aware of my brca2+ mutation, and BC, I was watching a newswoman on The View talking about how BC ran in her family and that she was scheduled to do a PBMX.  If I recall, my own reaction was "That's a drastic measure."  I also remember feeling she was brave.  Fast forward to BC and brca2+, I don't think of myself as either "brave" or taking a "drastic measure."  I feel like I've done what needs to be done.  

I know of one brca2+ woman, with no cancer, and she's not doing a thing except procrastinating, but certainly has no plans to do a PBMX..only a PBSO, "when she finds the time."  In part, our perspectives on the matter are greatly influenced by dealing with actual cancer.  

Susan - is the "variant of unknown signifigance" because Myriad doesn't have a big enough sample or this is a new mutation variation to them?  I never heard the discussion on NPR about the SCOTUS brca case (before the decision), but as it was relayed to me (and I my have gotten this wrong, second-hand), if their database was available, there could be more findings on this type of variants.  Not sure I got it right or understood it.  Maybe you do?  

Joan, did you have genetic counseling or just BRCA test? They actually thought I was more likely to have Lynch Syndrome or another I can't remember. They checked me for CHEK2 & PTEN gene variants before they checked me for BRCA. Lots of colon cancer in my family besides my ovarian & now the breast high risk stuff.

Papillon "And I am yet to find a good enough reason to keep a body part I no longer need that just MIGhT kill me if I keep it." Papi that was one of the thoughts that so influenced me when I was making my decisions. Since the odds were so against me with 12 of 21 women on my dad's side having CA--9 BC. I felt like I had time bombs sitting on my chest! Just noticed the "variant of unidentified significance". That is the exact phrase on my Myriad report.

edot - I know nothing about PTEN; the geneticist never mentioned it to me, but on the topic of surveillance as a brca2+ woman, I cannot fathom waiting for a second cancer to appear rather than being proactive with a PBMX and reducing one's risk to 1%.  Others have said this more eloquently than me, for sure, but there are no guarantees even if it is caught early with monitoring.  As you will see from my profile, even at Stage 1, my Oncoscore gave me a 27% chance of recurrence; 18% with chemo, but that assumes I'm one of the one in three where chemo actually works.... and these numbers assume Tamoxifen is doing it's thing too.   And this is one of the better subtypes to have - ER+ (Luminal).  At the bottom of my initial biopsy pathology report, it states that those that are ER+ with low PR+ or PR-, only have a 30% chance of hormone therapy working.  So that 27% chance of recurrence rises considerabley if I'm not in that 30%.  

I was open to monitoring too before my first surgery, but looking back at 2012, even ignoring my personal Stage 1 stats, BC took a full year of my life from me.  Five months of chemo.  No breast(s) is worth keeping for that.

Edot , I'm with Kam I have know idea what PTEN is? I was recommended to get a genetic test based on types of cancers in the paternal side ---forget what it was, OH well... AND my  geneticist got it approved--full coverage. All I had to do was get a blood test. DH was dying at the time with Lymphoma, it went on back burner. Then when I resurrected the letter approving the blood test --it was out of required dates. Then called to see if it still could be done. The geneticist grant had run out and they weren't receiving further calls.

Kam-I can't remember if I put family stats here or on the other Jolie thread. But as noted the females are at risk for trouble. 12/21 for cancer in some form for the women. 3/21 were the aunts.  The ten paternal aunts and uncles 3 f and 7m.  Of the 7 males, 1 died young- motor vehicle accident, 1 died at 75(dad no cancer) & 1 died at 80 cardiovasc(no cancer), N&T&D&J all had cancer from skin, colon, kidney/prostate, throat. So, of my dad's family of ten kids, 7 had cancer.

Have a full second cousin who researched back to IRELAND for the greatgreatgreatfather--no cancer, just cardiovascular. Grandmother raised in Ontario farm community in the early 1900's. Pesticides were unregulated and kids were exposed. I'm taking a great leap in that statement. But no one on that side of the family has done a cancer tree. Based on word of mouth, lots of cousins on the GM's side have died of cancer and their spouses. Numbers unknown. Based on what I have told you, I empirically concluded the genetic break is on the paternal-grandmothers side.

Can you believe I have not been able to get someone to study the family. Conversely, when i talk to family, the greatest concern is whether they would be uninsurable or a job risk. DUH "What about your life and your kids".

Then there's the geneticist. She took all the information. We set up a time to talk. Had a female cousin on skype, and one on a conference call. All 3 of us are nurses. Geneticists-masters nurse. Defines risk for the the two based on a system defining this stuff. BUT she looked at it from an individual risk within a family unit, not in the total paternal group. The person designing the chart to determine risk, I am sure would have said WTF.  But too much was happening in my life to do windmill conquering.

The point here is, if you have a genetic analysis, have the final analysis done by a doc geneticist. Do allot of research beforehand, do a family health tree.

Another scary thing about doing my Dad's family cancer tree. I circled all that had pre dementia signs at time of death or since developed dementia.  10 siblings---1  male -Motor vehile accident-no data, of the remainining 6 m's--- 5 of 6 had pre dementia signs or full dementia at death. Of 3 aunts-- 1 had predementia, 1 had dementia, both of these are deceased. I aunt who had BC and a recurrence with individual mx's , is now in dementia.  So, of ten siblings-- 8 of 10 had dementia pre or actual.  So, hope I got my Mom's genes, . Wish I got her cancer genes.

What I do know is we carry the Hemochromatosis gene. This gene can lead to dementia, cardiovascular disease, cancer, cirrohsis, arthritis. 1 in 12 americans carry this gene. Usually is not expressed, meaning by disease happening. Usually youhave to inherit from both parents. BUT since the family has such undeniably terrible stats SOMEBODY in the scientific community should blink an eye and say "Hmmmm there is a cluster we should study them"...............................

Edot, for anyone wanting to look into it, it is Cowden, not Crowden syndrome.

@JoanQuilts, was your second diagnoses a recurrence or a new primary?

I know this topic is so over at this point but I was in the grocery line-up yesterday and picked up a copy of the Star mag. Now I know this isn't the most credible source so take this with a grain of salt but in it the article states that since her surgery AJ has had back and shoulder pain issues and feels she went to fast on the total recon process. Anyway thought I would share since the media reports made it seem like it was a breeze and she had none of the crap we deal with after surgery