Weekly Round Up – The Angelina Jolie Edition

girl_with_lassoTime 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.
Nancy expands on the headline with these thoughtful words:

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+.

Jackie is even more forceful in her opinions:
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.
The issue of gene patenting is one that needs serious discussion and Yvonne does a wonderful job of it in her blog. Meanwhile, Catherine had this to say:
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.
Philippa  points to another important perspective – that of the “have nots”.  Not everyone has access financially to the surgery on demand as Angelina did  – nor even the most basic information and let’s not forget how cultural differences also come into play.
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.
And even in countries with accessible healthcare for all, it’s not so simple, as OBB writes from her own personal perspective:
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.
From the Searching For EMWA blog:
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.
I am leaving the final words to Elizabeth MacKenzie because they encapsulate what I so often write about here. Whether or not you agree with Angelina Jolie’s decision, her words, her lifestyle choices or indeed that of any other woman (or man – but it always seems to be the women who garner the most divisive comments!) when it comes to making healthcare decisions is not the point…. the point as Elizabeth writes is:
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..

Yours thoughfully,
Marie 

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.