What Angelina Didn’t Say

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I know. Why would you want to read yet another blog about Angelina Jolie’s recent revelation regarding her prophylactic bilateral mastectomies?  But I decided it was finally time for me to join the blogosphere to write about this very topic.  Why?  Because I have several concerns, some of which may not yet have been raised in the current discussion.

Let me begin by saying that I originally stood back from this conservation.  I wanted to  reserve any judgment until I thought I could be more objective and present my thoughts based firmly in the evidence.  Because the sad fact is that my initial reaction to Jolie’s revelation was solely an emotional one.  Just days before, I had learned that a dear friend of mine, a highly respected, well-loved cancer research advocate, was now being cared for by Hospice, having entered the last stages of her metastatic breast cancer.  In the last year, my only two female first cousins, one on my mother’s side and one on my father’s side, both had been diagnosed with stage 3 HER-2 positive, ER positive breast cancer.  Both of my cousins are 49 years old, and 6 years ago, I’d received my own breast cancer diagnosis at age 42.  Several of my friends are living with metastatic breast cancer and undergoing ongoing very difficult treatments.  And yet another dear friend just announced on her own blog that she was recently diagnosed with metastatic breast cancer.  I’m devastated and just plain angry that so many people dear to me are affected by the scourge of breast cancer.  So when several of my friends have asked for my opinion of Jolie’s decision, knowing that I’m a breast cancer survivor and an active cancer research advocate,  I told them that I needed to think it through and learn more before forming an educated–and less emotional–opinion.  But I’ve now had some time to step back and consider the national discussion, and my informed opinion is this:  I’m concerned–on many levels.

First, when Jolie decided to share her story, yes, I agree that it was brave of her to do so.  I’m so sorry that she’s been living with such fear about her high risk for developing breast cancer, and it’s truly a tragedy that she lost her mother at far too young an age to ovarian cancer.  And the tragedy deepens: Jolie’s grandmother and great-grandmother were also lost to cancer, and just yesterday, her aunt, who had undergone ovarian surgery after learning she was BRCA1 positive, passed away from metastatic breast cancer.  Being positive for the BRCA gene is an awful, black dilemma with terrible choices—and it’s a dilemma that can be faced by anyone.

ChoicesBut here’s the thing. Jolie’s decision was very much the correct one …  for her.   The fact that she went ahead with BRCA testing and ultimately decided to undergo bilateral mastectomy was undoubtedly an extremely difficult decision that was truly the best one  for her, based on her very strong family history, her relationship with her partner and his level of emotional support, her children and family, her mental and emotional well-being, her access to the best medical professionals, her finances. And her decision to share that choice was also the right decision for her.

But I’m worried.  For better or worse (I would argue, often for the worse) celebrities’ opinions carry more weight with many folks than those of Joe and Jane Q. Public–even in some cases when Joe and Jane are your medical providers or your family members.  So with this comes an important responsibility—which is one of the prices celebrities do pay for the admiration, fame, and wealth they receive.  If they are going to offer advice, even if based on their own personal experiences, they have a responsibility to present information accurately.  And I fear that Jolie made a statement that, for some, may be very dangerous.  She urged women to request BRCA genetic testing, saying “For any woman reading this, I hope it helps you to know you have options.  I want to encourage every woman [emphasis, mine], especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.”  The phrase “especially if you have a family history of breast or ovarian cancer” is spot on.  But it’s Jolie’s use of “any women” and “every women” that concerns me.

Women

Because the fact is that, as Jolie herself stated, “only a fraction of breast cancers result from an inherited gene mutation.”  BRCA mutations are indeed rare in the general population, and the overwhelming majority of breast cancers occur sporadically without a known family history.  So “every woman” should not be considering requesting BRCA testing from their doctors.  Jolie concluded her editorial by stating that, “…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.”  But importantly, what she does not say is that there are very specific factors that suggest high risk for such mutations, and it is those factors that should suggest when BRCA testing should be considered.  Individuals who may be at high risk for carrying a harmful (deleterious) BRCA mutation include those with:

  • a family history of early onset breast cancer (i.e., diagnosed before age 50 years)
  • a personal or family history of ovarian cancer
  • a previously identified BRCA mutation in a family member
  • pancreatic cancer associated with a family history of breast and/or ovarian cancer
  • a history of 2 primary breast cancers (either ipsilateral or bilateral)
  • Ashkenazi Jewish descent in newly diagnosed breast cancer or with a family history of breast cancer
  • triple negative breast cancer before the age of 60 years
  • male breast cancer

DNA

It is for those women AND men with any one or more of these factors who should be counseled and provided access to BRCA testing, should they choose.   In fact, in the newest draft recommendation statement from the US Preventive Services Task Force (USPSTF), they recommend against routine genetic counseling or testing for the majority of women outside this high-risk group.

And again, this is a very personal choice.  For those who are at high risk for a potentially harmful BRCA mutation, there are many considerations that may or may not lead to their proceeding with BRCA testing.  As we know, BRCA gene testing is currently available only from Myriad Genetics (stay tuned, pending the Supreme Court’s upcoming ruling concerning gene patenting).  This testing is expensive and may or may not be covered by insurance.  So affordability and access or lack thereof is a very real consideration for many women—a critical point that has been made by many bloggers.   Another important consideration is the possibility of a positive finding’s impact on the ability to receive future insurance.  Yes, GINA, the Genetic Information Nondiscrimination  Act, prevents discrimination from health insurers and employers.  But it does not apply to other types of insurance—say, for example, life insurance.

President Bush Signing GINAIn addition, it’s crucial for a woman to ask herself what she would do with a positive result should she proceed with such testing.  Would she opt for surveillance and chemoprevention?   Would she elect to undergo prophylactic bilateral mastectomy?  Would she consider surgery to remove her ovaries?  In fact, in 1997, the Cancer Genetics Studies Consortium, established by the National Human Genome Research Institute, published a consensus statement regarding the optimal care of those who carry a BRCA1 or BRCA2 gene mutation, stating the following recommendation regarding prophylactic mastectomy as well as oophorectomy:

“No recommendation is made for or against prophylactic surgery (eg, mastectomy, oophorectomy); these surgeries are an option for mutation carriers, but evidence of benefit is lacking, and case reports have documented the occurrence of cancer following prophylactic surgery. It is recommended that individuals considering genetic testing be counseled regarding the unknown efficacy of measures to reduce risk and that care for individuals with cancer-predisposing mutations be provided whenever possible within the context of research protocols designed to evaluate clinical outcomes.”

In addition, the Society of Surgical Oncology’s “Position Statement on Prophylactic Mastectomy” states the following:

“…Ideally, indications for consideration of bilateral prophylactic mastectomies are best evaluated by a multidisciplinary team which may include a surgeon, medical oncologist, pathologist, as well as a genetic counselor. A thorough discussion of alternative approaches includes close surveillance and other risk-reduction strategies. Such strategies include preventive agents such as tamoxifen or raloxifene, participation in clinical trials, and/or bilateral prophylactic oophorectomy (in premenopausal women). This discussion is essential to properly inform the patient of the spectrum of options for risk management. The patient should also be informed of potential risks and benefits of prophylactic mastectomy as well as the fact that the procedure does not provide 100% protection against the development of breast cancer [again, the emphasis is mine]. Additional factors to consider include patient age and other co-morbidities. Prophylactic mastectomy should not be discussed without a concurrent discussion of the potential benefits and risks of immediate reconstruction.”

Angelina Jolie imageImportantly, Jolie makes no mention of the lack of medical consensus concerning prophylactic mastectomies.  In addition, although she does discuss her increased risk of ovarian cancer and her decision to start with her mastectomy due to her higher risk of breast cancer, Jolie does not mention that certain BRCA1 mutations may also increase one’s risk of developing uterine, cervical, colon, and pancreatic cancers.  (BRCA2 mutations can also increase the risk of melanoma, pancreatic cancer, gallbladder and bile duct cancer, and stomach cancer.)

When Jolie discusses her decision to proceed with her surgery, she said she knew that her choice was the correct thing to do for her family.  Yet she does not speak directly about her first decision—to undergo her BRCA testing.   Because of her strong family history, including the fact that her mother died of ovarian cancer, Jolie was at high risk for carrying a deleterious BRCA gene, and she was therefore undoubtedly counseled by her healthcare team about BRCA testing.  And such counseling is critical before making an informed decision about whether or not to proceed.   This should include information about the different levels of testing for BRCA mutations and a discussion concerning the implications of a positive test, a negative test, or an ambiguous result.  The latter may occur if testing identifies a mutation in BRCA1 or BRCA2 that has not previously been associated with cancer in other people.  Counseling should also include an explanation that if the results are negative for known deleterious BRCA1 or BRCA2 mutations,  that does not negate the possibility that the patient may have mutation of a different gene that increases the risk of developing a hereditary breast or ovarian cancer.   There should also be a discussion of the potential psychological risks and benefits of genetic testing, as well as the implications of the test results for the patient’s family members.  If the results are positive or ambiguous, will or should the patient share the results with her parents? her siblings? her children?  Should they all be tested as well?  Is it possible that one or more family members wouldn’t want to discuss genetic testing?  What are the ethical and medical implications of the decision to share information with family members who may be at high risk if a harmful BRCA1 or BRCA2 mutation is identified–or the implications of the decision not to proceed with testing?   Again, everyone has the right to make her or his own decision.

Unfortunately, my feeling is that there was another important gap:  In Jolie’s editorial, there was no discussion whatsoever of the very real risks associated with mastectomy and reconstructive surgery.  She does talk about the drain tubes and the tissue expanders that had been placed to begin her reconstruction, comparing it to a “scene out of a science-fiction film.”  Yet she then says, “But days after surgery you can be back to a normal life.”  Many women who have undergone bilateral mastectomy with immediate reconstruction would strongly disagree there, whether their procedures were for prophylaxis or breast cancer.  Much has been written about Jolie’s wealth and the many assistants she has to help her with anything she and her family needs.  But the fact is that having your breasts removed, again whether prophylactically or due to breast cancer, is major surgery.  That means it comes with risks—those associated with being under general anesthesia, the potential for infection, the potential for blood clots, the need for pain medication, the potential for injury during surgery.  In fact, there’s even a name, albeit a somewhat misleading one, for a specific type of injury that can result in chronic pain after mastectomy or breast-conserving surgery: “postmastectomy pain syndrome.”  The specific mechanism underlying its cause is unknown, but it’s thought be a neuropathic pain condition due to damage of the nerves in the axilla and/or chest wall during surgery.  The syndrome may develop soon after surgery or many months following surgery, and in some cases, it may last for years.  The pain may be located in the arm, the chest wall, the axilla, or the shoulder and is often described as a deep, blunt pain, a burning pain, a shooting pain, or a pain that is triggered by pressure.

In addition, Jolie notes that “Nine weeks later, the final surgery is completed with reconstruction of the breasts with an implant.”  Yet more typically, breast reconstruction is a prolonged process, involving a series of operations and procedures.  And again, complications can occur.  In fact, some women who undergo reconstruction with implants experience enough complications that they decide to ultimately have their implants removed.

And finally, Jolie does not discuss the potential emotional and psychosocial effects of losing your breasts.  She does note that she does “not feel any less of a woman” and that the results of reconstruction “can be beautiful.”  And that’s true:  there have been many advances in the last several years, and the results can be incredible.  But Jolie does not broach the feelings of emotional and physical loss that many may feel.  Though a deeply personal issue, it’s important to acknowledge that the sensitivity, sensuality, and pleasure associated with one’s natural breasts also changes following mastectomy and reconstruction.

Decisions

So unfortunately, as with much in life, there are no simple answers here.  The decision of whether to proceed with BRCA genetic testing and how to proceed following a positive result is extremely complex, and there is no one correct choice for everyone.  In fact, the only correct decision is the one that is right for you.

In conclusion, as so many others have, I commend Jolie for sharing her moving personal story and for engaging the nation in this important discussion.   But perhaps the most crucial messages that have flowed from this dialogue consist of those words that she didn’t say.

Comment:

Dear Friends,

I’ve been so touched and gratified by the wonderful comments and support from many on Facebook and via email concerning my inaugural blog post, “What Angelina Didn’t Say.” Dr. Susan Love, Joy Simha, Ginny Mason, Jody Schoger, Donna Chaffe, Laura Snyder, Deb Cole, and so many other wonderful friends and fellow advocates, I can’t thank you enough for your kind words and encouragement!

To see some of these comments, please visit me on Facebook at https://www.facebook.com/deb.madden.31. And the good news is that I finally realized the “Comments” feature wasn’t turned on here in the blog itself–so now it is… (Thank you, Jody! 😉

I’m SO glad that I finally got the courage to dive into the blogosphere, and I have an ever-increasing list of important topics that I look forward to discussing with you in future blogs. To all of you attending the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago this week, I’ll be watching with great interest and look forward to hearing from you concerning those plenaries, panel discussions, and research findings that most struck you, whether highlights, “low lights,” or somewhere in between. Have a wonderful meeting, and safe travels!

Deb M.

Comments:

[The Musings of a Cancer Research Advocate] What Angelina Didn’t Say

2013-07-04 @ 7:21:54 PM

Debra, this posting is a real public service. Your highlighting of the issues, options, and omissions from the dialogue is invaluable to anyone living with the question of whether to get the BRCA test and what to do if results are positive. Your background, training, and emphasis on evidence comes through and is providing a real service to your readers.   Congratulations! Debbie

Deborah J. Cornwall
thingsiwishidknown@gmail.com
http://www.thingsiwishidknown.com

[The Musings of a Cancer Research Advocate] What Angelina Didn’t Say

2013-06-13 @ 9:42:26 PM

Deb. Outstanding! I definitely will refer the team of ovarian cancer survivors on my “Survivors Teaching Students” Program of the Ovarian Cancer National Alliance we do here in San Diego County to your blog. Also, my organization, Ovarian Cancer Alliance of San Diego’s website is under construction but will for certain place a link to your blog. You are an outstanding writer and I am so pleased you are sharing your message and wisdom out to the world!

pegford2@hotmail.com
http://www.ocaofsd.org

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2 thoughts on “What Angelina Didn’t Say

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