Weekly Round Up – The Angelina Jolie Edition
Time for this week’s round-up of the best of the blog posts which I’ve read over the past week. These are the posts that have moved me, taught me something, inspired me, and which I’ve wanted to share with you. Don’t forget if you have written a post which you would like readers to see, just leave a comment below.
Unless you have been hiding under a rock, you will be aware of the big news story this week – not just in the breast cancer blogosphere, but on all news channels – the Angelina Jolie story of her preventative mastectomy following a BRCA diagnosis.
Predictably the story led to dissenting views – which is part and parcel of the internet – but I must say I found it hard at times to read the opinions expressed by those who have had no experience of breast cancer, let alone any experience of having to face a decision such as Jolie did. Or, as Anne Marie so perfectly headlines it for us:
Woman Makes Personal Decision About Her Health, Suddenly Everyone on the Internet is a Doctor.
Isn’t it amazing the buzz this story has generated? Even more amazing is the fact so many are judging her decision. I’ve been reading a few posts and articles with some rather negative comments about Ms. Jolie’s decision. Reading them made me wonder how many of those commenters have witnessed a loved one dying from cancer. It made me wonder how many of those commenters are BRCA+.
I have a message for people of the judgmental persuasion. Until you know what it’s like to hear the words “You have cancer,” or to lose your mother or sister or daughter to it, you don’t get a vote. (Even then, you don’t get a vote; but you’re far less likely to want one.)
But, and I stress, none of this is meant to say we shouldn’t have the tough conversations, shouldn’t feel as if we can’t disagree with each other, a point so convincingly made at The Sarcastic Boob, where the writing always challenges me to think and shakes me out of any complacency I might have unwittingly stumbled into. Scorchy writes about our relationship with our breasts and this theme is also echoed powerfully by Lani in her blog. I strongly urge you to read both.
In a thoughtful piece, The Pink Underbelly touches on the “celeb factor” of the story:
Normally when a celeb comes out with a revelation about cancer — particularly breast cancer — the world takes notice because it’s happening to a celebrity. We get all atwitter about the person rather than the disease and the many ways in which it affects them. It becomes about the celebrity instead of about the cancer.
However, that’s not a place the blogosphere stops at it! The story was excavated and mined in the blogosphere to bring up much wider issues. To those who are not immersed in the complexities of the BC world as we are, the issue may have appeared quite simple – “brave celebrity cuts off breasts to save her life” (or words to that effect) but dig a little deeper and it doesn’t take long to discover that the issues are so much more than they appear on the surface. As Audrey writes:
But let’s not forget what we really need are far better options for people in this situation. Investment in research and collaboration to understand more fully how to prevent the disease has to be the best option for the longer term. And therefore better options than an are more available to frightened young women than this. They all deserve better.
Angelina urged women today in her article, “My Medical Choice” to get tested for a BRCA mutation if possible – except many women won’t get tested because it is NOT possible. Why? Because it’s really damn expensive. One company has the patent, and so the research cannot extend beyond and it will remain damn expensive to test. Unless . . . unless that patent gets kicked out, and we’ll see what happens in the coming weeks.
Please, please remember that the world is a diverse place. Please do not forget that many women (and men) live in very differing contexts and situations. What many of us can take for granted, is way out of reach for many, many others.
The reality is that Angelina, unlike many of us, has millions of dollars at her dispense, a team of nannies and staff and has access to the absolute best in medical care. For the rest of us it is not so simple. Living in a country like Norway and its amazing health care system, I still struggled through my own experiences. Just last year, I decided against reconstruction for my one healthy breast when I removed for preventative reasons. Why? After a year of treatment and procedures, my husband and I could not imagine having to deal with a long recovery again and the stresses of looking after our daughter through it all.
I’m happy for Angelina that she has improved her chances of avoiding breast cancer by such a large margin, but her description of her bilateral mastectomy and reconstruction gives the impression that the decision and the procedure itself were easy peasy. Good lord, where did my medical team go wrong? How come I wasn’t back to work a couple of days after surgery? The thing is, my story is easy peasy compared to some of the stories I’ve heard since joining the BC Club.
We are all people and all individuals. We can make different decisions and still respect each other. It doesn’t matter whether we are in the “pink crowd” or not. Breast cancer prevention and treatment options are still gray. I made my treatment choices. Time will tell whether I made the right decisions but to me, they seemed the best decisions I could make based on the information that was available at the time. We are individuals, we have brains, and we have the right to make decisions that we believe are best for us.
I realize that even these words will cause some readers to get up in arms as it raises the question of how we make our decisions, where we get our information from and how it is presented to us. As Judy Norsigian writes in Our Bodies, OurSelves “it is now up to women’s health advocates to ensure that the media coverage and public debate that follows does not offer false information” Ah, but that’s a discussion for another day….
Meanwhile, keep on having those important discussions and keep on respecting each other.
Until next week..
Finally, apologies to those of you who have written wonderful blogs this week and I have not included – I really wanted to keep the focus on this story for now. Please, do leave a link in the comments below to your blog and normal service will resume again next week.
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Great Info. I salute Angelina Jolie for being so brave and an inspiration to all women.
So many wonderful voices out there this week (well, every week–we’re all just focused on one thing). The celebrity factor is huge here. From Jolie’s perspective she wanted to use her unique position. From another perspective it’s just all superficial–news about yet another celebrity. From another treatment options and what we’re willing to accept as part of women;s healthcare. From another gene patents. From another still about access and class. All atoms are colliding on this one and it’s fascinating. Needless to say, I wish Angelina Jolie well and the hundreds of thousands who have made–and have yet to make–such important decisions. (Many thanks for including me in this week’s round up.)
You are always so respectful of the many different points of view that are out there Marie and I appreciate you showing the klaiedescope of views each week
Ok, i admit it – i was one of those who viewed this story on a one dimensional level – boy can i see how wrong i was on that! thanks for opening my eyes to the multi-dimensional aspects of this topic
Impressive line up of diverse voices – thanks for bringing them all together in one place like this
So many issues! you are so right once you scratch the surface you reveal the underbelly of the reality of cancer.
Thank you for putting all of our varied views together. I am honored to be included among these authors.-Elizabeth
Marie what a wonderful round up on the topic of Angelina Jolie. I love that you included so many different voices with many different thoughts and brought them together.
Thanks, so much Marie…
I can’t take credit for the quote! Because I have such lousy chemobrain, I can’t remember the name of the girl who wrote that on Facebook. I will hunt down the conversation but I did think it was an ingenious way of summing the whole thing up….. She said that within an hour of the information going viral.
As usual… tied together quite beautifully…
Wow! I was wondering how a Round Up would be possible on the topic of Angelina Jolie’s article, especially because of the scale and diversity of the discussion. This must have been a huge task, as your analysis and the comprehensive coverage of the debate is first class. Thank you for highlighting the different issues which have been brought to the fore. I know that the blogosphere has been a-buzz, and surely that is a good thing.
Thank you for including the diversity and for giving my own slant its very much appreciated space.
Thank you Philippa – your dispatches from the east are so important – keep them coming.
Another good article to read on this: http://e-patients.net/archives/2013/05/angelina-jolie-brca1-public-health-patent-law-the-empowered-patient.html
Great wrap up of this Marie…I loved reading all of these…I am left with the idea that we all have to make our own informed decisions. And who are we to question someone else’s decision…it assumes we are right, they are wrong, or they are uninformed. I have more faith in people than that, and less egocentricity. While I do get that her celebrity status made guide people secondarily, I think her intent was to say why she made the decision for herself. But it has become quite the springboard for education, and that is a good thing.
Thank you, Marie, for including me in such a great post. You amaze me with how you are able to tie so many voices together. Your Round Ups allow for a ‘peer review’ by such diverse view points which is truly invaluable. JoAnn 🙂
Coming from an academic background JoAnn I am tickled pink (no pun intended!) that you call this a “peer review” 🙂