Angelina Jolie's prophylactic surgery

Wow, that was a fantastic article.

People on these boards have not been very kind on another thread and it really floors me.

For all we know AJ may be on here with us, looking for support, helping others and bitching just like the rest of us about how scary the cancer experience is. While she may not have had the dx, she is the daughter of someone who passed from cancer. That sucks, it's frightening and any one of us that could do what she did probably would have jumped at the chance to avoid the road we were forced to travel.

AJ- If you are with us here on BCO, sorry for your loss, glad you have support and thank you for your willingness to share.

As to the tiny scars remark some people have taken offense to- who wouldn't try to minimize the impact on their children?

How many of us have glossed over the gory surgical or treatment details in mixed company? How many of us don't want to talk about breast cancer all the time?

When she is ready, I'm sure she'll say or do more.

No one of us is perfect, it's easy to be critical and pass judgement, but how often have we all bitched about people's comments and stupidity in the face of our personal challenges related to breast cancer? Cut the woman some slack.

Good luck to you AJ.

Joan, what a fine piece of writing.  thank you.

The lack of empathy for what its like to have six kids and such a risk saddens me. 

Joan so nicely put. AJ has made a very personal decision and has chosen to share her decision with the world. I would have hoped that others could be more understanding and not pass judgement. I only had a single MX and it was one of the most heart wrenching decisions I have ever had to make. I had many women tell me it was a personal decision and something I had to be able to live with, and I'm still working on that. What we have to realize is that what works for one person may not work for another. We have to make a decision with the information we have and what we feel will give us the best life possible. We all have our own journey in life.

I am terribly sad that women who have tested positive for BRCA, some of them very young, and are struggling with the decisions they need to make are going to come here & see some of the ugly comments made today. They will not feel welcome here. We get lots of them in the high risk threads. Obviously some people don't read beyond what affects them directly.



I was very fortunate that I was almost menopausal when I had to have my hysterectomy for ovarian cancer. There was no thinking about it. It had to be done. I can assure you I would have felt very differently about it if I had been 25 with no children and thinking that getting rid of my ovaries might be the only thing that would save my life because of a gene mutation. I think it would take a great deal of courage to go ahead with a surgery when there was nothing wrong YET, because you knew in your heart it was the right thing to do.

I think she is a brave woman.Very glad she went public with her decision and why.

Well said, Joan.

We should not judge others until we have walked a bit in their shoes.  There is so much ignorance about breast cancer and its risks not only in the media, but also among our medical professionals.

After my dx, I had the BRCA testing done because of a strong family history and luckily I was negative for both BRCA and BART gene expression.  I had to have the MX on my left cancer side because of the high grade multi focal/multi centric DCIS, but I was hoping to save my right breast.  But, if the genetic testing would have been positive,  I was prepared to take both breasts as well as remove my ovaries.   So glad that I did not have to  make that decision.

Most of us on this board are here because we did not have the choice that AJ did to drastically reduce our odds of developing BC.  And  for those of us who do not have the BRCA expression,  I think it is important to really understand what the stats are telling us and try to not make these decisions from a place of fear.  I think that there are many women who are choosing to have a BMX based on their desire to never have to worry about cancer again....and unfortunately, there is no such guarantee.

I, for one, will not second guess another women's very personal decision to try to be around to see her children grow up.  I wish AJ nothing but the best and continued good health.

Joan--you wrote a great article.  I am also dismayed by comments made on other threads.  For those who already have a bc diagnosis and have endured great suffering, I am sorry.  I was lucky to just have what I have, and I have tremendous empathy for you. Like many others, I do lurk on the Stage IV boards at times, to fully appreciate what women go through in late stage bc. This does not negate, in any way, the tremendous burden placed on those who have received a BRCA diagnosis, both those who have breast cancer and those who fear it.  It forces individuals, many times, very young individuals, to contemplate drastic surgeries to avoid these diagnoses.  The surgeries aren't minor.  I don't care if the scars are small, medium, large, etc.  The surgery, even prophylactic, is very invasive.  As I stated on another thread, those with a BRCA diagnosis have a particular, unique burden because they possess defects in tumor suppression genes that put them at risk for a multitude of cancers;  not only breast and ovarian, but also colon, pancreatic, melanoma, etc (and risk of primary peritoneal cancer--which is the cousin of ovarian cancer).  So, they have the Sword of Damocles over their head even after removing breasts and ovaries. And, as noted by AJ, even after getting the mastectomy, their risk of recurrence is higher than many others for bc (5 percent as opposed to 1 to 2 percent).  So, I won't minimize AJ's situation both pre and post-surgery.  I don't have brca in my family, but several near and dear to me carry the gene, some of whom have suffered greatly.  One of my close friends had both IBC and Triple Negative IDC, and even had a bone marrow transplant when those were done.  She has to have frequent colonoscopies, etc. beyond her fear of recurrence of bc.

Joan - great piece.

My own personal experience, just inquiring about the brca test when it first came out, was dismal, so I am very pleased to see someone like AJ come out about the testing and her decision.

Myriad's stock rose 4% today on the news.  I suppose that presumes more women will get the testing done, but in my case, if it wasn't for a doctor telling me "what would you do different if you find out you are brca+" or "you'll have to go to a big city to get tested and it's expensive," or having an insurance company that only pays for the test "if one already has cancer," I might not be where I am today, worrying about my cancer coming back.

So perhaps AJ's coming out will enlighten both potential brca carriers and their physicans that both getting the test (including the hows and whys) and doing a PBMX is not some horrible thing or arcane thing to do.  I honestly can't think of a better "role model," given how breasts are tied up with our femininity and who is revered more than AJ, in that department?  Maybe insurance companies will loosen their restrictions on who can be reimbursed.

Atleast for most brca carriers, we have seen someone in our family (in my case my mother and 2 aunts) die of breast cancer.  We sort of know what a means, though I don't think anything supplants personal experience.  Nevertheless, the "what would you do different" response is uncalled for.  (For one - how about an ooph?)  To those of us who think we are crazy for doing a PBMX (without cancer), I've found they don't have the ability to understand, so it is not worth engaging these folks.

To FarmerLucy's question:

Oh - and I think I heard mention that AJ had some type of nipple procedure a few weeks before the mx. Does anyone know about that?

I have the same exact question!! I was told, unless an A or B cup, you don't qualify for a NSPBMX.

My own process began on Feb. 2 with a procedure known as a “nipple delay,” which rules out disease in the breast ducts behind the nipple and draws extra blood flow to the area. This causes some pain and a lot of bruising, but it increases the chance of saving the nipple.

She was treated at the Pink Lotus Breast Center in Beverly Hills.  Is this procedure something only the rich can afford?

I also have a question about this and anyone who knows the answer, please chime in:

My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.

Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.

AJ seems to imply that her particular version of her brca1 mutation has a higher risk of BC than the average for brca1.  Am I reading this wrong.  I never got a set of separate statistic for my 866delGT?? Did she pay for more information from Myriad than my $4000 bought me?

As much as I have had enough of the pink quest for "awareness" at the cost of basic research into the causes and cures for bc,  I think that AJ's story will do a lot to educate the public about the very real risk to a small minority of women who may have the BRCA gene mutations and what their options are for testing and further treatment. 

Even though she cannot understand how it feels to hear those words, "you have breast cancer", I cannot imagine how hard it would be to amputate perfectly health breasts when there is no guarantee she will or will not eventually get cancer.  I only wish her the best.

JoanQuilts - I really appreciated your response to this.  I am the 3rd generation with breast cancer, but the only one so far to go to stage 4.  We are BRCA- which makes me worry for my sister even more b/c she doesn't even have the option of making this type of decision even though she is dealing with biopsies every 6 months.  It is such a personal decision, and should be just that - personal.

Wow, anderson111.  That's brilliant information.  Who knew?  

I did check back on your previous posts and noticed that they've been "Deleted by the Community". I guess that means that the consensus of this community is that you are a spammer and/or you are here only to lead us to your webpage. 

Beesie, you kinda have to love a medical spammer called Dr. Viral.

I was also a little taken aback by the critical comments on a lot of news sources online about AJs decision.  Some mention that only the rich can even afford the BRCA testing - but the more it is brought to light, i believe, the better.  Hoping that someday any woman who needs the testing will be able to get it affordably

well said Dyvgrl!  good luck with everything!

Momine, I never even noticed the name.  It's perfect!