Angelina Jolie Tackles Cancer Head-On
My Twitter stream this morning was filled with references to Angelina Jolie’s “medical choice” so I clicked on one of the many links to the New York Times Op Ed piece by the actress and director to find out what this choice was. Turns out that Jolie is a BRCA1 carrier, a gene which significantly increases her risk of developing breast cancer and ovarian cancer, and she made the decision to have a preventive double mastectomy.
Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.
A preventive mastectomy (also called prophylactic or risk-reducing mastectomy) is the surgical removal of one or both breasts. It is done to prevent or reduce the risk of breast cancer in women who are at high risk of developing the disease.
Why would a woman consider undergoing preventive mastectomy?
Women who are at high risk of developing breast cancer may consider preventive mastectomy as a way of decreasing their risk of this disease. Jolie’s mother died of cancer at the age of 56 and Jolie writes movingly of how her mother ” held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was.”
She says that she kept her surgery private but is now writing about it in the hope that other women can benefit from her experience.
I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.
Jolie acknowledges that the high cost of the test in the USA is a financial barrier to many women who would benefit from the test. “It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.”
The theme of taking control features throughout the New York Times piece.
Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action. Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.
Whether or not to make the decision to have a preventive mastectomy is obviously a very personal decision.
Someone asked the question on Twitter if Jolie’s piece will increase the numbers who will now seek mastectomies as a preventative measure. I do not imagine that is as simple as that for anyone. It’s a very individual choice. It’s important to note that doctors do not always agree on the most effective way to manage the care of women who have a strong family history of breast cancer and/or have other risk factors for the disease. Some doctors may advise very close monitoring to increase the chance of detecting breast cancer at an early, while some doctors may recommend preventive mastectomy, while others may prescribe tamoxifen or raloxifene, medications that have been shown to decrease the chances of getting breast cancer in women at high risk of the disease.
While I am glad that Jolie’s piece has raised awareness and stimulated an open discussion, it is also important that we balance the discussion with facts and also heed the stories of the “ordinary” women who have been sharing their experiences online for much longer. The decision to undergo a prophylactic mastectomy is a very individual one. The celebrity factor has raised the discussion to the consciouness of the Twittersphere today, but the fleeting nature of celebrity news means something else will take its place tomorrow. Meanwhile, for thousands of women and men across the world who have been effected by cancer, the issues will continue to be debated and discussed every day. Don’t forget their stories too!
Facts About BRCA Gene
- BRCA1 and BRCA2 are human genes that belong to a class of genes known as tumor suppressors.
- In normal cells, BRCA1 and BRCA2 help ensure the stability of the cell’s genetic material and help prevent uncontrolled cell growth. Mutation of these genes has been linked to the development of hereditary breast and ovarian cancer.
- The names BRCA1 and BRCA2 stand for breast cancer susceptibility gene 1 and breast cancer susceptibility gene 2, respectively.
- A woman’s risk of developing breast and/or ovarian cancer is greatly increased if she inherits a BRCA1 or BRCA2 mutation. Men with these mutations also have an increased risk of breast cancer. Both men and women who have harmful BRCA1 or BRCA2 mutations may be at increased risk of other cancers.
- Many research studies are being conducted to find newer and better ways of detecting, treating, and preventing cancer in BRCA1 and BRCA2 mutation carriers. Additional studies are focused on improving genetic counseling methods and outcomes. Our knowledge in these areas is evolving rapidly.
- Have you or a close relative been diagnosed with cancer at an early age?
- Do you have more than one relative with the same type of cancer? If yes, is the same type of cancer found in more than one generation?
- Has any one person in your family had more than one type of cancer?
- Has anyone in your family been diagnosed with bilateral (both sides) cancer of paired organs (e.g., breasts, ovaries, kidneys)?
- Are you related to someone who is known to have an inherited mutation that can cause cancer?
You might also like to read:
Michelle Heaton speaks about her brca2 diagnosis
Tough decision, especially for someone in her profession. My hat is off to her for going public, in the hope that it will help others. How terrible that some people in the USA can’t afford to have the test – healthcare is something we take for granted here in the UK.
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Just read her post on it – not an easy decision to make and yet with an 85% chance of getting cancer, it was the only one. How readily available is that test in Ireland Marie and the cost?
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That’s a good question Lorna and as Julia says for all the complaining (often justified!) we do in Ireland about our healthcare service, we have access to this test through the public service – although this is subject to the usual wait times.You can also chose to go private – not sure what cost would be – I heard something in the region of 1500 euro. Public would be a referal from your doctor based on clinical indicators for hereditary breast cancer/ovarian in a family including the presence of a family history of breast/ovarian cancer, especially in a first degree relative and may also include any of the following: presence of early onset disease (<40y at diagnosis), bilateral breast cancer, breast and ovarian cancer in the same individual, ovarian cancer before 60yrs of age, male breast cancer. In my own case I was automatically referred for testing because of my diagnosis at age 34 but thankfully tested negative.
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It’s sad news for Jolie but she sends a powerful and far-reaching message about being proactive. Thank you, Marie, for sharing.
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Yes, I really liked how she framed the message Nancy.
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For some reason, Marie, this made me feel so much better about my own masectomy. Thanks for posting about it.
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Victoria, what a wonderful endorsement of what Angelina Jolie is trying to do – thanks for sharing x
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Thanks Marie for the post. I agree with you about Jolie’s empowerment and matter-of-fact attitude. Hopefully it will make big waves. More discussion is still so needed about all types of cancer. Great step forward taken. Very generous of her to relinquish her right to privacy for a greater good
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Great to get your comment Chari -and i agree that this a powerful step forward in the discussion
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Good to see you include that list of potential reasons to be tested. Whilst the awareness created by Angelina is good, this story has the potential to create a lot of unnecessary distress. It is important to clarify that BRCA mutations account for a very small percentage of breast cancers, even in those with some family history of the disease.
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Thanks for making this important point Carole
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I applaud her decision. I am BRCA2+, so I understand where she’s coming from. I also think she has a good heart and in her own way, she is an advocate for others. I do have a couple of issues with the article, but… Maybe I’ll write a post. Or not. Who knows? Thanks for sharing about it, Marie. One thing for sure, it will generate buzz, and lots of it.
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You must write about it Nancy! The first thing that came to my mind early this morning when I read this was I wonder what Nancy will write about it 😉
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I’m glad to hear women like Angelina Jolie speak up about BRCA and some of these other topics that not all of our docs tell us about, even after cancer.
Neither my oncologist or breast surgeon mentioned BRCA even though I have most of the risk factors. Fortunately my OB/GYN enlightened me and encouraged me to be tested. Even then, my oncologist’s PA simply commented that BRCA was rare. Thanks for sharing Marie.Now more women can have the knowledge so they can decide for themselves.
Rachel
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thanks for sharing your experience Rachel. your last sentence really sums things up for me!
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A very fair and even post, Marie. I’m impressed you have it out in such a short time. As I was saying on twitter, this makes me wonder if the patenting case for BRCA will have some more light shed upon it. Like you say, faced with having the mutation there are many choices one might make – but getting those results in the first place can be a challenge depending on one’s healthcare (and getting a referral). So many issues! As you said, it’s not a straightforward path. ~Catherine
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Well we woke up earlier to the news this side of the Atlantic Catherine but i have actually added and changed around this post since i wrote it earlier this morning as I think about other aspects. You have just brought the patenting issue to the fore now – i had forgotten about that aspect!
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An excellent post, Marie. The buzz in the blogosphere must be huge. I’m BRCA negative, but still got two recurrences, the last one metastatic. If I could have predicted the future, I might have opted for a preventative mastectomy, but one’s mate also has to be considered in all this. One may have all the financial resources and drive to have it done, but be (or feel) prevented by someone close to them in an abusive relationship. xo
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That’s another important perspective Jan. I think you may have been the first to raise it here so thank you for that.
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I’m glad Ms. Jolie decided to share her journey because the decision-tree is not always an easy one. When I was first diagnosed, no one told me about the BRCA genes, however, I wanted a mastectomy and a prophylactic mastectomy on the other breast. I was given a resounding “no” by doctors because my other breast was a “perfectly viable organ.”
A couple of years later when I learned of the BRCA test, my doctor didn’t recommend it because I had no family history, and it was expensive. I insisted. The test showed I was BRCA-2 positive, and I immediately demanded, and got, a prophylactic mastectomy and reconstruction.
Even in this informed day and age, there are still so many roadblocks in the medical community that prevent women from taking advantage of forward thinking/preventative steps. We definitely need more conversations like the one from Ms. Joie, and your post, Marie. Thank you.
XOXOXO,
Brenda
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Brenda, it’s wonderful to hear from you. Your unique voice is very much missed in the blogosphere.
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thank you for writing about this very important. My cancer was hormanal but now I wonder if I should get this test done. How many ladies will think the same question. When Angelina and Michelle take this to the public it enpowers others to take action and become proactive about their own health. In 2010 I listened to a lady on morning tv talking about her cancer, how she found it and her treatment. 3 months later i discovered my cancer. Only for this lady I may not have found it and caught it in the early stages. I often think I owe her my life. So these ladies are raising awarness and hopefully helping others. And so do you Maire and your blogging friends!!!
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Thanks Mona. Awareness is important but it is also important to arm ourselves with all the information we can from reputable sources and talk to others when it comes to making the kind of decision that Angelina made about preventative surgery
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I’m the oddball in the BC community not impressed with BRCA testing. I wrote a few posts about it several months ago, in which I predicted this would happen (can’t say I’d expected a supernova star like AJ, but I knew some celebrity would do it). I wish you’d included some percentages about how UNLIKELY the general population (as in not Ashkenazi Jewish) is to be positive. I’ve seen lots of numbers thrown around but its usually under 20% for anyone with breast or ovarian cancer (20% of us with HER2, 20% of us with false negative mammograms, for comparison). I am shocked at the comments here in which BRCA was not discussed. On the contrary, it was brought up right away to me. I was not encouraged or discouraged, but the fact that the incidence is not high was not really talked about.
Ultimately I blame myself for bending to patient peer pressure for getting it, not stepping back to consider everything with a cooler head. But, I wanted to be “proactive,” like a good little patient. I imagine to myself if I’d gotten the test before diagnosis, got my negative result, then wound up with cancer, I would be even angrier than I was about the false negative. And I know this is another way the uneducated-in-breast-cancer folks who suddenly think they’re experts because they’re reading questionable material after this whole mess, will think I was not “proactive”, would blame the patient. Can’t be proactive if you test negative, and sometimes you still get cancer, folks. And even if positive, the only action is the slash portion of treatment–I want something better.
The BC community is open to understanding the fact that mammograms are at times oversold. I kind of think this gene test is too. Just another empty tool, a busy body task to look like something is being “done to fight cancer”, but it isn’t really.
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Thanks for weighing in on this discussion. I appreciate you sharing your personal experience. It’s so important that we can do this in the blogosphere and I always encourage as many different view points as possible here. All our stories contribute so much to the discusssion and it would be the foolish person who only ever listened to one side of the story – especially the socially acceptable (or even medically accepted) version we are so often presented with.
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Marie this is really so well written in explaining about the mutation. I am so glad you brought up the fact that so many women who are not famous face difficult choices about breast cancer and they are to be thought of too. I think Angelina was very brave to tell her own story. I am glad though that you included the fact that there are other choices that can be made when facing risk like this. It is such a personal decision and you showed that there are different people that have different risks involved and choices when it comes to facing breast cancer. I met someone recently who carries the gene and did the mastectomy and got metastatic breast cancer anyway. This disease can be so cruel and it just shows how much we still have to understand it and try to advocate for getting answers and seeing ways to prevent and treat the disease because there is so much about the disease that robs us of things that are just not fair. Thanks again for this great post.
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Susan, thank you for adding your wisdom and perspective to the conversation.
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