Is there a type which is 100% not hereditary?..

I just wanted to add that I firmly believe there are other genetic links that have yet to be discovered. Also, I had no family history of breast or ovarian cancer when I was blindsided with a breast cancer diagnosis out of the blue in 2011 at age 34. I put off genetic testing because I didn't fit the model for a typical "breast cancer family". Imagine my surprise when I tested positive for a BRCA1 mutation after active treatment was over. My daughter subsequently tested positive and had her prophylactic bilateral mastectomy with recon last week. I have since learned that my dad was the likely carrier and his being male along with his small family size that had few females meant the mutation was better able to hide. Even my genetic counselor was surprised at my positive result. If you feel you are at risk and would like to explore it further, it really is best to talk to a genetic counselor. You may find support and advice at facingourrisk.org if you haven't been there already. Best of luck to you both.

Well, I confess I know little about HER2 specifically, and whether or not it indicates hereditary cancer, but not all hereditary breast cancer (or ovarian cancer) are BRCA1 or 2 related. There are other potential genetic mutations, some known, and some not. There are also families like mine where the reason is NOT known (we are BRCA-), and it may be the result of a combination of genetic variants/polygenic factors, but it is clear there is a hereditary pattern. It can be a little frustrating to not have a clear answer as to WHAT the issue is in my family, and I tried searching for a while, but I have accepted the uncertainty of it and that we may never know...or maybe one day we will. I have my suspicions. But either way, I can only go with what I do know now.

I know I have been assessed with a 40% risk from 3 seperate genetics experts. I know that in my family the breast cancer hits in a woman's 40s. I know in my family the cancers are sneaky and aggressive. And deadly. I know that while I am a risk taker in some things, I am NOT a risk taker when it comes to the breast cancer that strikes my family. I know that screening to "catch it early" failed my mother and grandmother. I know that an awareness of my risk has impacted my life and life decisions ALL through my life. I know that screening causes me anxiety. I know that I cannot do that high risk screening for, oh, 40-50 (3-4 different screenings a year!) years or until I am too sick and old for surgery anyway. I know that a PBMX does not remove all risk, but I know it removes enough risk to bring me some peace that I did all I could and won't have what ifs. I know that I am booked for a PBMX on April 24th, 2014 and my family, friends, and medical providers are overwhelmingly supportive. Even if I don't know WHAT genetics are at play, I know in my family there is a genetic risk...or we are INCREDIBLY unfortunate to have such a terrible number of sporadic cancers (or to always be in the 1 in the 1 in 8!). I can remember being in various public places...the gym, the supermarket line, and thinking....there are 20 women around me. On average, a little over 2 of us would get breast cancer (I know not necessarily 2 in THAT line, but I am playing averages here!) and I always thought right away..."I wonder who the second woman in this line would be?" as I ALWAYS felt I was one of them. That plays with your head over the years!

I can't tell you what is right for you. Everyone has their own risk comfort, and there are different clinical guidelines (for example, I know some surgeons won't consider 25% assessed risk as "high risk", here where I am the guidelines do say 25% is high risk BUT a PBMX is more on a case-by-case basis, not "automatically" recommended as it might be for a higher risk).

Anyway, I agree with LRD...your mom's doctor is wrong to speak in absolutes. It is very likely he is making sweeping generalizations based on assumptions or rather superficial genetics knowledge, but he certainly does not sound like a genetics expert!

There are non-BRCA mutations out there, and new ones are discovered every year.  I do not have a BRCA mutations but there are two other women with breast cancer in my family - my mom and her aunt from her dad's side.  We all got our BC in our 40s.  After my mother discovered she had BC (and her aunt also had it), she had the BRCA testing done.  She was negative.  Since she was negative, I was told these exact words: "Your mother's cancer is not genetic, and if she does not have a BRCA mutation, you are not likely to have a BRCA mutation."  And I was really happy.  I ignored the fact that I knew that statement was wrong.  I knew there could be undiscovered mutations in our family line, and I knew the women in my family got their cancers early, and my mom's was a Stage Ia cancer but metastasized several years later.  So, ignorance was bliss.  Since I was told that a PBMX would not be recommended for me, I did not get one.  This is the only thing I regret, that I listened to so-called professionals, and not my instinct.  Now that I have a very aggressive BC (and I am also negative for BRCA), my onc said flat-out: "I have no doubt your family has an undiscovered mutation."  I will not give my daughter (who is only 9) a false sense of security about being BRCA negative.

Papillon,

When I went in for genetic testing, the genetic counsellor discussed with me not just the possibility of the BRCA genetic mutations, but some of the other less known mutations as well.  In looking at my family history of cancer, we decided to only test for the BRCA mutations because these other mutations tend to drive different types of cancer (in addition to breast cancer) and other health conditions, and my family didn't have a strong history of those other conditions.  But when my results came back negative, the counsellor was clear in explaining that while it meant that I do not have any of the known BRCA variants, there was still a possibility of a genetic connection either from BRCA variants that are yet to be discovered, or from another type of mutation (PTEN, as an example).  In fact the counsellor told me that if I wish, I could come back to be retested in the future, because undoubtably there will be more known mutations as time goes by. 

So it was pretty clear to me that being negative on the BRCA test didn't necessarily mean that my breast cancer was not genetic. 

The other thing to keep in mind is that even without having a genetic mutation in the family line, you could still have inherited features that increase your risk.  My mother is in her late 80s and still has very dense breasts.  I'm a few years post-menopausal now, and while my breast density appears to finally be coming down a bit, I still have very dense breasts.  Did I inherit that from my mother?  And did that possibly contribute to the development of my breast cancer and my mother's breast cancer? There is no way to ever know, but I think that's certainly possible.  We know that ER+ cancers are driven by estrogen, and that some women have more estrogen in their systems than others.  Could that be an inherited trait?  I think that there is a lot more to hereditary cancers than just the known genetic mutations. 

Given how little we know about hereditary cancers and all the possible genetic causes, I think it's absurd for any doctor to say that a particular type of breast cancer "is not hereditary".  The known BRCA mutations tend to be HER2- and ER- but there certainly are exceptions to that rule - it doesn't take long on this board to find that out so you would think that any breast cancer oncologist or genetic specialist would know that too.  And then there are all the yet-to-be-discovered mutations that might drive a different type of breast cancer. 

Papillon, I'm sorry that you have been getting so much confusing and conflicting information.  Your situation is difficult enough without having the 'experts' you consult be proven to not really be experts at all.

Hi papillion,

I don't have any answers for you, but I would encourage you to get the BRCA test anyway - just to clear that up. You're probably negative. I can share my story, which is similar to yours. My mom was dx in her mid 40s (in the 1980s) and died about 8 years later  in her early 50s of metastatic breast cancer (well, congestive heart failure probably from the adriamycin, but she had mets in her bones). Her mother (my grandmother) and and sisters (two of my aunts) were fine and all lived / have lived into their late 80s (one aunt is still around at age 87). However, my mother had a first cousin on her father's side who also had premenopausal BC and died from it. And, there is also a lot of cancer on my father's side too - dad died of lung cancer in his 50s, and his sister died of "stomach" cancer in her 60s, though we suspect this might have been metastatic BC, as she'd had a lumpectomy in her early 40s. I have no sisters. My gynecologist and PCP thought I had a moderate familial risk, but thought I was probably BRCA negative. I have very few other risk factors - except not having kids until I was 30 (though I tallied up a total of 3 yrs of breastfeeding between the two kids). My ob/gyn started my mammogram screenings at age 35. I was scheduled for my first MRI when my gyn felt the lump at my annual check up (at age 41). My mammograms had been clear (and the diagnostic mammogram that was taken after the lump was felt was also clear), and the lump really only showed on MRI. 

Long story short: I had the lump biopsied, it came back as invasive lobular. During the wait between diagnosis and surgery I had the BRCA test done to evaluate my risk and help decide surgical options. It came back negative, which didn't really surprise me. My surgeon said what many of the other comments have said - that there are genetic variants out there that haven't been discovered, but that it doesn't mean it's not hereditary (direct genetic, or possibly epigenetic factors - my mom was the youngest in her family by a decade - - a menopause baby - born when my grandmother was 46). 

It was suggested that due to my young age (younger than when my mom had been diagnosed), the type of cancer (lobular has a slightly higher chance of contralateral) and my family history, that my risk of eventually developing cancer in the other side (which appeared healthy on the MRI) was about 15-20% lifetime (if I live another 40 years, which I certainly plan to!). It was a tough decision, but I went with the prophylactic on my healthy side, and mostly do not regret it, as I didn't think I could stand the screenings (two spots that showed on the MRI might have needed biopsy) or live with myself if it ever came back on the other side and I hadn't taken the opportunity now (and I didn't have to have my lymph nodes disturbed on that side). 

What I do know is that I would NOT have done a prophylactic mastectomy prior to diagnosis - especially now knowing I am BRCA negative -- even given the knowledge I now have. That may seem like a crazy statement, but cancer is a crapshoot, and a mastectomy is a major, life changing surgery, and from what I've read and heard from friends, reconstruction is not a piece of cake (I haven't had recon, and my recovery has been pretty easy). I'm not saying definitely don't do the prophylactic surgery - you should think about it and come to a conclusion you're comfortable with, and I completely understand your reasoning - I saw my mother die - and I was barely out of my teens. My kids did not get to meet either of their grandparents on my side, and I definitely want to be around for their adulthoods. 

You can also think about intensive screenings (how old are you now? have you had any biopsies yet?) that includes mammograms, ultrasounds and MRI's. You can also look into tamoxifen as a chemopreventative and see if any of the oncologists would recommend that for you. A few other things to consider - as time marches on, the treatments and screenings will get better - they are already much better than they were when your grandmother was diagnosed, and even when your mom was diagnosed the first time. 

I wish you all the best in this difficult decision. 

Divecat, thanks for that info!

Hi Papillion,

I also hate when people ask "why did you do both when you're BRCA negative" and "isn't that drastic?" and I have to explain the familial and now personal history risk factors. 

That being said, as I sit here on the other side of this now, I can tell you fear is a powerful motivator - and it's difficult to think clearly and evaluate risk. I was terrified when diagnosed and kept having flashbacks to when my mother was dying and I was convinced it was going to happen to me too. I feel a lot better now - my mom's was in her lymph nodes when diagnosed, mine is not.  

Would I do the same thing again? Probably, and there is peace of mind from having both of them removed, but there are days when I do sort of wish I'd only done the uni-mx and kept the other side on high surveillance and tamoxifen (which would have reduced the chances of contralateral recurrence).  And I can only imagine that I'd have similar thoughts if I'd done something completely prophylactic -- though if I had decided to do something at age 36 when I was done nursing kid #2, I suspect that the lump was already there and would have been found at mx. 

I do regret not insisting on getting an MRI at age 36 once I'd finished nursing, as it might have been visible then and I could have had a lumpectomy. Mammograms and ultrasounds failed me in early detection. I'm nearly certain the MRI would have found it a little earlier. I was lucky in some respects as my lymph nodes were negative, I had a low oncotype, and I've avoided chemo. 

I would strongly consider getting an MRI before you decide on surgery - for two reasons ... 1) If there is anything there, you can make plans for looking at your nodes, get an idea of the grade and other tumor characteristics, and 2) There might be nothing there.... which might affect your decision process. 

There are two outcomes for the "nothing there" 1) There are things that pop up on the MRI but are benign on biopsy and 2) Nothing really is there. 

I second what Beesie wrote regarding how ill-informed many people are regarding mastectomy and their personal risk level. Sadly, when it comes to the subject of genetic breast cancer risk (namely as it relates to BRCA and Angelina Jolie, but the subject in general), there are so many people who have read just enough to consider themselves experts when they are anything but.

I was hopeful immediately after AJ announced her BRCA status and mastectomies that perhaps the light that would be shone on the subject because of her celebrity would be a positive thing to come out of her unfortunate situation. Instead, almost immediately, those of us in the BRCA community came under attack from self-proclaimed experts who not only know nothing of breast cancer, but have zero knowledge of what it means to have a BRCA mutation, other genetic pre-disposition, or a truly strong family history. The small but vocal minority of people who attacked AJ and proclaimed that she just wanted a "boob job" make me sick. Those are the people who not only don't understand the genetics of her situation, but who also have taken no steps to learn more about it.

It also irks me to no end when people assume that mastectomy is some simple procedure that is all about the cosmetic results or when someone comes here and complains like Beesie mentioned of growing tired of pre-menstrual breast pain and wants a mastectomy. Ugh. The posters who list a distant relative who had BC and now they self-identify as "high risk" or as having a "strong family history" just shows how much awareness has failed in spite of the too-numerous-to-count breast cancer campaigns. I think most of those women see mastectomy as a slightly more invasive breast augmentation procedure rather than the big deal that it actually is. I wish that were the case and it was no big deal. My daughter had her PBMX last Wednesday and it looks as if she has necrosis on the right nipple. I guess we will find out for sure tomorrow. It makes me want to scream that there are huge risks and people who think it's all for bigger, perkier boobs are woefully ignorant. There is absolutely an "Angelina Effect" and it's talked about on other sites with frustration. The new hurdles those with real reason to seek out PBMX now face because many women fail to see that PB(MX) is indeed a huge deal. In no way do I blame AJ, she was doing what she needed to do and writing about it because she felt that was the best approach; however, I get so frustrated with those who have little to no understanding of her situation but act as if they are cancer/genetics experts. I also agree that the effect was around long before AJ, she just put a well-recognized name to it is all.

As I mentioned above, I don't have a strong family history--almost no family history actually. I just recently learned that my great-grandmother died of breast cancer in 1945, but that means almost nothing in terms of my own risk level. I put off BRCA testing for so long after diagnosis and treatment because I really did not think I'd be positive. I knew that I kept coming up on the wrong side of an unlikely statistic, so I guess I really shouldn't have been all that shocked that I'd again draw the short straw with regards to my BRCA status. These are the circumstances surrounding my BC diagnosis: 

• I was 34
• No family history
• I had fibrocystic breasts which lead me to have mammograms and ultrasounds at 29 and 33 for suspicious lumps
• Clear mammogram and ultrasound 10 months prior to finding the lump that would ultimately turn out to be cancer
• Was given a BIRADS-3 rating by the first radiologist I was sent to for the new lump (I didn't accept this)
• An experienced and qualified breast surgeon told me he was sure it was a fibroadenoma due to my age, the feel of the lump, and my lack of family history. Because of this, he refused to remove it and sent me to another radiologist who only reads breast imaging
• The new radiologist gave me a BIRADS-4A rating and agreed it was likely a fibroadenoma but thought a biopsy would be wise 
• Breast surgeon reluctantly agreed to remove it because it was painful even though he was adamant that breast cancer tumors don't hurt
• Ultimately, I was diagnosed with triple negative breast cancer that is also basal-like

My point in mentioning my history is that there are no absolutes with any of this and before I found my lump, I had no reason to think that I'd ever get breast cancer, let alone be at extremely high risk and that my daughter would need a PBMX. I didn't fit the mold for someone with an elevated risk, yet here I am and it's been a life-changing experience. So, therefore, I view those with a more evident risk level than I originally had as needing to explore their options until they feel they have an accurate picture of the role their genes play. I realize I see the world from the perspective of someone who kept getting hit with all the unlikelihoods and I try not to let that color my responses to people here. I realize that this may make me more conservative in my approach to tell people to check it out and push for answers, but my personal situation dictates such. If you have a family history and feel concerned, please, by all means, look into it until you reach your personal comfort level with regard to your risk.  

Divecat, I am exactly the same as you when it comes to researching the potential negative outcomes in order to feel prepared. That description fits me perfectly also.

Everyone on this thread is very well-informed and my rant does not apply to anyone who has been posting above.

Papillon, speaking for my own post, and I think speaking for the others as well, NO, this isn't referring to you.  

Sorry if I took this off track.  I picked up on Divecat's comments about a PBMX being "a bit drastic" and the warnings that doctors give to some patients.  Some patients (not referring to you) really need those warnings.