On the Meaning of Birthdays to a Cancer Survivor (aka “My first 49th?”)

When I was growing up, birthdays were always of tremendous significance in my family.  My sister and I both looked forward to our own special days all year: we loved the presents, the attention, the parties, everything about it.  But maybe most of all, we loved the excitement of finally seeing the theme my mother chose for our birthday cakes.  She always made complex cakes of her own special design, and she outdid herself every year.  We still talk about the most memorable one: the “Bucky Dent” cake, designed to look like my sister’s large blue, buck-toothed stuffed rabbit that she’d named in honor of the (very!) handsome Yankee short stop.  As a kid, I also loved that my birthday came just a few days before Halloween.  I was a painfully shy little girl, but I loved dressing up to be someone (or something) else, the spookiness of it all, seeing all the other kids’ costumes in the neighborhood, and eating far too much candy for several days.

Celebrating my 4th birthday with family and friends

But I figured that when I “grew up,” birthdays would become just another day.  And that’s definitely the case for my husband.  As one of 9 kids in an Irish-Catholic family, his parents (understandably!) didn’t have the time or energy for big birthday celebrations, particularly by the time Marty arrived (the 8th child and youngest boy).  He does reminisce about how his mother would let the kids choose their favorite meals for their birthday dinners and how that was always such a treat.  But now he encourages me NOT to get him anything for his birthday (I don’t listen) and, last year for his 50th, NOT to do anything, let alone anything special (I didn’t listen).  And just this week, when I asked if he minded that I’d be attending a grant review panel on the day of his birthday, he started laughing … “Oh my God, Deb: I’d be absolutely devastated! “Nuf said. 🙂

But the fact is that every year when the calendar reaches October 27th again, I take time to reflect–and to appreciate just how fortunate I am to BE here.  Most young adults still have at least a residual sense of invulnerability that’s hung on from childhood and adolescence:  from simply not understanding the concept of death to not being able to comprehend one’s own death, a feeling that death “can’t happen to me.”  Yet at the age of 22 years, I lost my sense of invulnerability for a lifetime.  It literally was a black-and-white moment, during which my childhood doctor and I were looking at my chest x-ray, showing one lung that appeared black (as it should have) and the other covered entirely in a frosty white.  The cause, stage III Hodgkin’s lymphoma–a diagnosis that if received just a decade before may very well have meant that I wouldn’t be celebrating many more birthdays.

And on Halloween night this year, my memories returned of another moment that similarly divided time for me.  Exactly 10 years ago, 4 days after my 39th birthday, I learned that I was facing the real possibility of not being here to celebrate my 40th.  On that Halloween day in 2003, I was walking up the stairs to my new cardiologist’s office, fighting the pain gripping my chest and stopping every few seconds to catch my breath. Once I reached the office, I carefully settled myself into a chair in the waiting room and watched in a daze as members of the office staff went about their business, all while dressed in Halloween costumes.  Normally, I would have gotten a kick out of that.  But not on that day.  I was still trying to catch my breath when the technician who had performed my cardiac testing walked right over to me, put her hand on my shoulder, leaned over, and asked if I was okay.  She then clasped my arm warmly, smiled, and went to her next patient. She was in costume as well, a frightening one actually, but the fact that she obviously recognized my fear, comforted me, yet didn’t say, “don’t worry; everything is going to be fine”–that was one of the scariest moments of my life. And it wasn’t fine.  Instead, I learned that I had 90% blockage of one of my coronary arteries.  The cause: scarring and narrowing caused by my radiation treatment for lymphoma several years before.  And, as I’ve written about previously, because of the location of the blockage, I faced a terrifying decision–whether to proceed with an angioplasty, which presented the risk of another coronary artery collapsing and a heart attack during the procedure, or whether to go right to open-heart surgery for a coronary artery bypass graft.  When I later found myself asking the cardiologist whether I should be thinking about “getting my affairs in order,” I was shocked on so many levels: that I was actually asking this question, how truly surreal the situation was, and worst of all, to hear that the answer was “Yes.”

As a young adult cancer survivor (AYA), I know that the reality is a stark one for far too many of us.  According to the National Cancer Institute (NCI), unlike overall improvements seen with older adults and younger children, the survival rates for young adults with cancer have not improved in nearly 30 years. The lack of improved outcomes can be due to a number of factors, including delayed diagnosis (since many MDs may rarely consider the diagnosis of cancer in a young adult), lack of health insurance and limited access to medical care, receipt of treatment that may not be most effective for their cancers due to limited understanding of the biology and etiology of cancers in AYAs, and the unique supportive and psychosocial care needs that come with such a diagnosis at the juncture between adolescence and adulthood.  And of course, there’s the fact that AYAs face a substantial risk of developing serious late effects of their cancer treatment, including cardiotoxicity and second primary cancers–which, in my case, includes my breast cancer diagnosis at the age of 42 years, also thought to be secondary to my radiation).

So coming full circle, although it may seem childish, I treasure my birthdays because I’ve been given the gift of still being here.  This year’s was my 49th–and next year, I won’t be describing it as my “second” 49th.  I’ll be thrilled that I’m here for 50 and for every day before and after.

A Historic Moment: First Pre-Surgical Drug Approved for High-Risk Breast Cancer

As far too many of us know, a diagnosis of breast cancer is shattering, frightening, overwhelming … a maelstrom of one emotion after another.   And while trying to come to terms with this life-altering diagnosis, many of us have found that we’re confronting a new language where pathologic terms and molecular subclasses, the biology and behavior of our breast cancer, are driving our treatment options, our choices, our prognoses.

Shortly before I learned that I had breast cancer in 2007, patients diagnosed with what is known as HER2+ breast cancer were told that their cancers were very aggressive and that their prognoses were poor.  Normally, the protein known as “HER2,” a receptor on breast cells, helps to control breast cell growth, division, and repair.  But in those with HER2+ breast cancer, more than the two copies of the HER2 gene may be present, leading to overproduction of the receptors on the cell’s surface, HER2+ overexpression, and uncontrolled breast cell division and growth.  The day that I finally gained the courage to read my pathology report after my surgery, I was aware of this–that HER2+ breast cancers were considered more aggressive, tended to grow and spread more rapidly, and were less responsive to certain therapies when compared to other breast cancer subtypes.   And though I already knew that my tumor was found to be estrogen-receptor positive (ER+), I didn’t yet know my HER2/neu status.  Either that conversation with my surgeons had taken place during the drug-induced haze immediately following my surgery, or it hadn’t happened yet.

HER2+ breast cancer, Perjeta Patient Information, Genentech

As I turned the pages of my pathology report, I registered that the estrogen receptors were 62%–and that a higher percentage would have been considered “better,” but that this was still considered “good” prognostically.  When I saw 0% for progesterone receptors, I recognized that that actually wasn’t so “good”:  after all, it was labeled right there on the report as of “unfavorable prognostic significance.”  But it was the next line that I was most nervous about:  and there it was, my HER2/neu status … and it was “Negative.”

When I saw this, I did feel something akin to relief—though as I learned not long after, there is nothing clear-cut about breast cancer.  On that January afternoon in 2007, should my tumor’s HER2 status have been positive, I actually would have been in a much better position than women diagnosed just a few short years before my own diagnosis.  The fact was that recent advances had offered a critical new treatment option for patients with HER2+ breast cancer.  Just 2 months before, in November of 2006, trastuzumab (Herceptin®), a targeted biologic therapy, had been approved in the postsurgical (adjuvant) setting for early-stage HER2+ breast cancer (BC).   I was correct in my understanding that HER2+ disease is a particularly aggressive form of BC—and that because of the aggressiveness of breast cancers that overexpress the HER2 protein, patients with HER2+ disease have an increased risk of recurrence and decreased survival compared to those with HER2-negative disease.   But the development and approval of trastuzumab was truly a dramatic breakthrough for the treatment of HER2+ BC, both in reducing recurrence risk for those with early disease and increasing overall survival for patients with metastatic disease.  In fact, when the combined results of the adjuvant BC trials were presented during the American Society of Clinical Oncology (ASCO)’s 2005 Annual Meeting, the audience greeted the news with thunderous applause and a prolonged standing ovation.

Those who jumped to their feet when hearing the news about trastuzumab recognized this targeted therapy for the critical breakthrough that it was, one that has since changed the natural history of early HER2+ BC.  And yet …

Though trastuzumab and other targeted therapies since approved for breast cancer–and other cancers– have led to remarkable improvements in response to treatment and survival for some, resistance to targeted treatment, both intrinsic and acquired, has limited efficacy for others and is now a clear, sobering reality.   The upsetting truth: studies have also reported that depending on tumor characteristics and stage, 17 to 40% of patients treated with trastuzumab regiments for early-stage HER2+ BC go on to develop recurrences within 5 years.   Said another way, despite the fact that trastuzumab heralded a new era in the treatment of HER2+ BC, there remains a critical unmet medical need for preventing recurrence after treatment for early-stage HER2+ disease—and for preventing the approximately 6,000 to 8,000 deaths due to HER2+ metastatic disease every year in this country.  Accordingly, there also remains a need to expedite the development, study, and approval of safe, highly effective therapies for patients with high-risk early breast cancer.  And it is for this reason that the FDA released a draft guideline in May 2012 outlining an Accelerated Approval pathway for presurgical (neoadjuvant) treatments in breast cancer.

But why then the title above, “A Historic Moment”?  Last month, on Thursday, September 12th , the FDA convened its Oncologic Drugs Advisory Committee (ODAC), asking ODAC for the first time to consider Accelerated Approval for an oncologic agent in the neoadjuvant setting, based on a primary endpoint known as “pathologic complete response” (pCR).”  Pathologic complete response is proposed as a “surrogate endpoint” of tumor response that should be strongly correlated with more traditional endpoints, such as disease-free survival or overall survival.  In other words, if approved, this would be the first neoadjuvant regimen formally approved by the FDA for any type of cancer.

During this September 12th ODAC Panel, I had the privilege of serving as the Patient Representative as a temporary full voting member.  The question before the committee specifically concerned Accelerated Approval of the anti-HER2 therapy pertuzumab (Perjeta) in combination with trastuzumab (Herceptin) and docetaxel (Taxotere) for patients with HER2+ breast cancer in the neoadjuvant setting.   Like trastuzumab, pertuzumab is a monoclonal antibody that targets the HER2 receptor, yet it binds to a different part of the HER2 molecule and therefore does not compete with trastuzumab.   Pertuzumab prevents the pairing (called “dimerization”) of HER2 with other HER receptors (HER1, HER3, and HER4), serving to block the signaling pathways within the cell that lead to tumor growth.  When pertuzumab is combined with trastuzumab, it therefore provides a “dual” or more complete blockage of the HER pathway.

ODAC meeting at White Oak Campus

Approving an oncologic agent as a neoadjuvant therapy in early-stage disease would be historic since traditionally, new breast cancer drugs have first been approved in the setting of metastatic disease. Typically, approval for the treatment of early-stage BC then follows several years later based on the results of very large randomized postsurgical (adjuvant) trials with thousands of patients and prolonged follow-up.   If successful, neoadjuvant trials may therefore enable more rapid assessment of drug efficacy and expedite the approval of treatments for early breast cancer.

During this ODAC panel, the comprehensive discussion focused on several critical topics, including:

* the remaining unmet medical need for high-risk early HER2+ breast cancer and the far too many patients who have their cancer return as metastatic disease

* considerations regarding the use of pathologic complete response (pCR) as a primary endpoint in the neoadjuvant setting

* potential long-term toxicities associated with the neoadjuvant use of pertuzumab

* the need for very clear labeling to provide clear guidelines on proper patient selection (due to some data suggesting increased risk of cardiotoxicity) and the safest, most effective use of pertuzumab

*  the unique circumstances concerning pertuzumab, including its earlier approval as a first-line treatment for metastatic HER2+ BC based on statistically significant improvement in overall survival and its well-studied mechanism of action with the HER2 pathway and safety signals

* the need to consider the totality of the evidence concerning this agent

* the ongoing, now fully accrued APHINITY Phase III adjuvant trial that, if successful, could support conversion of accelerated approval to regular approval

On this last topic, many ODAC panel members stressed a critical point to the sponsor:  that if the results of the APHINITY adjuvant trial are in fact negative, Genentech should voluntarily remove the drug for the neoadjuvant treatment of early-stage breast cancer

During the public hearing portion of the session, many members of the public, including advocates, breast cancer survivors, and nonprofit advocacy organization leadership eloquently stressed the need for earlier, evidence-based treatment options and for treatments that may potentially prevent early high-risk HER2+ BC from later recurring, while also expressing the need for caution, urging Genentech to establish registries to follow those who receive pertuzumab specifically in the neoadjuvant setting for potential late toxicities.

Our panel ultimately voted 13-0 with one abstention in support of pertuzumab in combination with trastuzumab and doxetaxel for patients with HER2+ BC in the neoadjuvant setting.   And just a few weeks later, on September 30th, the FDA went on to approve pertuzumab in this setting, indeed making it the first FDA-approved pre-surgical breast cancer drug.

Perjeta (pertuzumab)

As stated by Dr. Mikkael Sekeres, ODAC Committee Chair, “This is a historic moment as we have voted to support the first approval of a drug for the neoadjuvant treatment of breast cancer: pertuzumab.  In doing so, we are supporting the rapid movement of a highly active drug for metastatic breast cancer to the first-line setting, with the hope that women with earlier stages of breast cancer will live longer and better.  We do this with some words of advice to Genentech.  All eyes will be on the confirmatory APHINITY trial and on you to verify this initial signal of efficacy and to confirm the bandwidth of safety that we have seen so far.  If these are not confirmed we urge you to avoid a repeat performance of Avastin and voluntarily remove this drug from the market.”

Upon announcing the approval of pertuzumab, Dr. Richard Pazdur, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research, said in an FDA statement, “We are seeing a significant shift in the treatment paradigm for early stage breast cancer.  By making effective therapies available to high-risk patients in the earliest disease setting, we may delay or prevent cancer recurrences.’’

All eyes will indeed be on the large adjuvant APHINITY trial, with the hope that this was ultimately a critical first step in truly expediting the approval and availability of safe, highly effective treatments for patients with high-risk early BC and in significantly decreasing the risk of developing metastatic disease.

For patients with HER2+ breast cancer, whether newly diagnosed or long-term survivors, the HER2 Support Group provides information, resources, and support at http://her2support.org/.

The FDA’s Meeting Materials for the September 12, 2013 Meeting of the Oncologic Drugs Advisory Committee (ODAC) are available on the FDA’s website at http://tinyurl.com/bdsgot2

In addition, if you are interested in learning more about the FDA’s Patient Representative Program, visit http://www.fda.gov/forconsumers/byaudience/forpatientadvocates/patientinvolvement/ucm123858.htm.

Please note: The views expressed on these pages are mine alone and do not represent those of any other party.

What Angelina Didn’t Say


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.


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


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.


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.


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.


[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

[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!