Dear Angelina,

Dear Angelina,

You rock girl. Thank you for sharing your story with the world. By going public in revealing your genetic predisposition to cancer years ago and the choices you have made to ameliorate it, you display a level of courage that exceeds that which is necessary in dealing with this on even a private level. You again spotlight the fact that people have medical options and should be allowed to proceed in whatever manner they and their physicians feel is best. And if it means removing perfectly normal organs from one's body because they may one day develop cancer that goes undetected until in an advanced stage, then so be it.

It is unfathomable to me the number of people who decried your decision to undergo prophylactic mastectomy two years ago. People who know nothing about hereditary cancer, people who are completely uneducated about risk statistics, people who just decide they need to put their ignorant opinions out all over the internet. No doubt such people will be making the rounds again now that you have revealed your most recent preventive surgery. It a shame really that so many don't bother to learn about the things they don't understand.

At least you and I and countless others are comfortable in our decisions because we have been empowered with the knowledge necessary to navigate the web of hereditary cancer and are able to make truly informed choices.

I wish the best to you,

-Me

So for everyone reading this who may not be aware, two years ago film actor Angelia Jolie Pitt wrote an op-ed piece in the New York Times announcing that she had tested positive for the BRCA1 gene mutation and had made the decision to undergo prophylactic mastectomy. It opened up a brief public dialog about hereditary cancer and preventive surgery, among other things. 

Sample pedigree showing hereditary cancer pattern

Coming from a family with a hereditary cancer syndrome caused by a CDH1 gene mutation, which raises gastric cancer risk to >80% and lobular breast cancer risk to 39-50%, I applauded Ms. Jolie Pitt for her candor and honesty and willingness to bring hereditary cancer information to the general public. I expected people to ask questions and learn from her story. What I didn't expect to see was the backlash.

I was horrified by many of the comments I saw people making about it on social media. Most notable was a few women (I think they were women-it was Twitter, so one never knows) who stated that Jolie Pitt was "crazy" and that the surgery was "reckless" and "unnecessary" because of the fact that "hereditary cancer represents less than 10% of breast cancer cases."

WHAT!? That last bit really got to me. Because you can't take a statistic based on the general population and apply it to the risk percentage of someone with a known gene mutation. That's just bad math. It's politician-level distortion of statistics right there. Yes, it is true that breast cancer associated with BRCA and other genetic mutations is less that 10% of all breast cancers, but that has nothing to do with any one woman's individual risk. 

The fact that hereditary breast cancer makes up such a low percentage of all breast cancers goes right out the window when a woman tests positive for the gene mutation. As Jolie Pitt explains in her editorial, her personal risk of developing breast cancer became 87% the second she found out she carried the mutation. That's quite an increase from a 12% risk, which is the average woman's, don't you think?

Today, she has another piece in the NYT because she recently made the choice to have her ovaries removed to prevent ovarian cancer. She goes into great detail about what the doctors looked for in screening tests, it's actually pretty cool. I'm sure she agonized over the decision and clearly waited as long as she could until she reached the point where the risk of keeping them was just too great. I admire her honesty and courage to face the consequences of her decision, which include early onset menopause and of course the scrutiny of an ever-devolving internet culture.

It's very easy to comment on something when you have no idea what you are talking about (ignorance is bliss I guess?) but let me very clear here: unless you have been told that you carry a gene mutation that increases your risk of developing any kind of cancer, you should probably hold off on judging Ms. Jolie Pitt's decisions. 

You can philosophically ponder what you would do in a similar situation all you want (incidentally, the decisions you think you would make and the decisions you actually do make when put in that situation can differ greatly-I speak from experience), but don't for one second admonish or ridicule the decision of someone else. People are not cavalier in making this decision, trust me. Though my gastrectomy was not preventive in nature - there was a pocket of cancer detected upon endoscopic screening - I still faced the possibility of having the surgery even if cancer was not detected, as did many in my family.

I am thankful that I was able to learn about my genetic predisposition for cancer so I didn't have to die like my grandmother, father, sister and two aunts. Just as Angelina Jolie Pitt has stated she is thankful she does not have to die like her mother, grandmother and aunt.

I can say that the comments on today's NYT post seem to be mostly positive and supportive so far, so I can only hope that many people have a greater understanding of how hereditary cancers work. 
(Edit: In looking at the comments on practically every other site that put up an article about this, it appears that people are as uninformed and irrational as ever.)

So here's to medical science, informed choices and better outcomes. As Jolie Pitt and countless others have stated, Knowledge is Power!