Angelina Jolie saved someone's life today

I am sure that Angelina Jolie did not write her letter in the NY Times with that intention in mind (http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0).  But in her writing it is clear that she realized that she faced a difficult personal choice and knew that knowledge was empowering.  She has been on the forefront on informing the public about worldwide humanitarian crises, situations that we often don't want to hear about or know about because thinking about them seems too difficult to bear or comprehend.  In many ways, her personal story is just as difficult to hear about and to comprehend having to make the choices that she was faced with.

What Angelina Jolie revealed was the essence of how personalized choices in medicine can, and in my opinion, should be made.  Consultation with a genetic counselor can be the first step in the process.  There are certain patterns of disease in a family that may indicate the possibility of being a BRCA carrier.  The National Cancer Institute at the National Institutes of Health offers some guidelines to decide if testing is right for a particular person (http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA).  One can choose to meet with a genetics counselor, review the family or personal history, and even defer genetic testing if that is their choice.

Angelina Jolie decided that understanding the 87% risk of developing breast cancer, that preventative (or risk reduction) double mastectomy was the right choice for her.  I think that early consultation with a plastic surgeon is vital to the decision making process.  Hearing about a double mastectomy from the breast surgeon without understanding the various options for immediate breast reconstruction can be difficult to process, and might make the surgical considerations seem more challenging than they might otherwise be.  With advances in surgical technology and treatment for preventative mastectomy, such as nipple areolar sparing surgery, direct-to-implant reconstruction, acellular dermal matrices in staged tissue expander to implant reconstruction, muscle sparing microsurgical abdominal surgery for transferring one's own tissue, and alternative donor sites for tissue transfer, preventative mastectomy can be a viable and empowered option for most women.

We are entering an age of personalized genomic medicine, where every individual cancer's genetic blueprint can offer us clues to customized treatment and prognosis. But we must not leave out the individual choices the patients' need to make to suit their needs, and the information that Angelina Jolie has shared will empower women to seek the knowledge that they need to make the right individual choice.

As Angelina wrote, "I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer."

As a physician interested in shared decision making and surgical decision making in breast cancer, I could not have said it any better.

NY State Law requires discussion of breast reconstruction

While there is not much to be excited about regarding legislative efforts in Albany, this past week Governor Paterson signed into law bill A10094B to amend the public health law in relation to information and access to breast reconstructive surgery. The purpose of the law is to ensure that information relating to the availability and access to reconstructive surgery following breast cancer surgery is provided to all breast cancer surgery patients.

As I've mentioned in previous posts, the dismally low rate of breast reconstruction after mastectomy (30-40% or women who undergo mastectomy surgery are undergoing breast reconstruction) is likely related to the limited information being provided to women at the time of diagnosis of breast cancer, when then initial treatment decisions are being considered.

The justification for the law is simply...

240,000 women will be diagnosed with breast cancer this year in the United States and approximately 40,000 women will die of the disease. Over the last forty years, considerable progress has been made in the diagnosis, detection, and treatment of breast cancer. Genetic testing for susceptibility genes like BRCA, targeted chemotherapeutics like Herceptin, and microsurgical reconstructive techniques have given women more hope, more options, and a better chance of not only surviving but recovering from this disease. Breast cancer care, at the highest level, is delivered by a multi-spe cialty group of physicians and surgeons that include a medical oncolo gist, a breast surgeon, a radiation oncologist, and a reconstructive surgeon. Despite the advances and the progress, there remains a signif icant disparity in the care provided to women with breast cancer, particularly with respect to access to reconstructive surgery. Reconstruction of the breast after cancer surgery has not always been the standard-of-care. With the development of improved reconstructive techniques during the last two decades, we entered a new era in breast cancer care. Reconstruction has repeatedly been shown to improve the quality of life and overall well-being of women who have been treated for breast cancer. However, it is not for everyone; there are some women who undergo surgery for breast cancer who either do not want or are not candidates for reconstruction. In the 1990s, studies showed a great disparity among women who received reconstruction and those who did not. This disparity related to the patient's socioeconomic and educational status as well as to the breast surgeon's practice setting. When breast reconstruction was viewed as a cosmetic procedure, insurance companies were not compelled to pay for it. Poor women often could not afford to pay out-of-pocket for the procedure. To address this disparity, Congress passed the Women's Health and Cancer Rights Act in 1998. This legislation guaranteed universal. coverage for reconstruction after surgery for breast cancer and compara ble provisions were added to New York State Insurance Law to ensure that coverage was extended here in New York. Despite these laws, however, disparities in access to reconstructive surgery remain. Several important national studies conducted under the leadership of Amy Adelman at the University of Michigan and Caprice Greenberg at Dana Farber analyzed why many women did not receive recon struction. The two dominant causes were their failure to understand their options and breast surgeons' failures to refer their patients to a reconstructive surgeon. According to a recent report by Greenberg, the greatest predictor of reconstruction was a documented discussion about reconstruction between the breast surgeon and patient. This critical discussion is not taking place often enough. Statistics an the type of treatment women receive for breast cancer care at a particular hospital or in a particular region are not publicly available. The best surrogate is to compare the patient population of interest with a similar one from a studied database. The Surveillance, Epidemiology, and End Results (SEER) cancer registry, run by the National Cancer Institute (NCI), provides this opportunity. Analysis of treatment received by women in different settings provides stark contrasts, The SEER database looks at women treated in a variety of geographic settings, with attention paid to factors such as level of education, socioeconomic status, type of medical center (cancer center vs community hospital), and a variety of other factors. Multiple analyses show that poor, uneducated women are far less likely to receive reconstruction. Their breast surgeons are less likely to discuss it with them. They are less likely to receive treatment at a dedicated cancer center. They are more likely to receive a lumpectomy and radiation than to undergo a mastectomy followed by reconstruction. Greenberg et al. reported the disturbing fact that women with Medicare had a recon struction rate of 11% compared with women with managed care or indemnity insurance who received reconstruction approximately 54% of the time. Nationally, across multiple socioeconomic groups and different treatment environments, only 33% of women undergoing surgery for breast cancer will receive reconstruction. The bill is, designed to educate women regarding the availability of reconstructive surgery and enhance access to these services. When a Woman is diagnosed with breast cancer, she will be given information that clearly explains her rights to coverage and her options as they relate to reconstruction. This is akin to the informed consent a patient must sign before undergoing any operation. The bill will also require that the patient receive information relating to the option of referral to a reconstructive.surgeon at the time of diagnosis or shortly there after if she chooses. Because important decisions on cancer care, such as the choice between having a mastectomy or a lumpectomy, are influ enced, in large part, by the patient's understanding of reconstructive options, the reconstructive surgeon must be part of this discussion from the very beginning.

The law takes effect in January 2011. I am curious to see how hospitals will respond to the new law.

After Cancer, Removing a Healthy Breast

On March 8, 2010, Tara Parker-Pope wrote an interesting article in the NY Times (http://well.blogs.nytimes.com/2010/03/08/after-cancer-women-remove-healthy-breast/) about the increasing frequency of what is called contralateral prophylactic mastectomy. This refers to removal of the healthy breast on the other side at the time of therapeutic mastectomy for cancer. She describes that the percentage of women requesting this procedure has doubled in the past 10 years. According to a University of Minnesota study presented last week in St. Louis at the annual meeting of the Society of Surgical Oncology, 10% of women in their 40s requested contralateral prohylactic mastectomy at the time of breast cancer surgery.

Parker-Pope goes on to suggest that women may be choosing this option because they think that it will increase their survival, or as she recounts a surgeon saying; "Women say the reason they’re going to have both breasts removed is because they want to see their children graduate or watch their grandchildren grow up." We do know that having a diagnosis of breast cancer in one breast does confer a higher lifetime risk of breast cancer in the other breast, on the order of 0.6 to 1 percent per year. But she states that since more cancers are being diagnosed at an earlier stage, the risk of dying from a breast cancer in the opposite breast is very low.

The reality is (as she does mention in the article) that many women are choosing this option because they "never want to experience the stress of a mammogram of biopsy." While they may understand that the risk of dying from breast cancer is related to the stage of the breast cancer that they are having treated, and that survival from early stage breast cancer is the same for breast conservation therapy and mastectomy; "Why would you want to risk getting cancer a second time?” a patient interviewed in her article asks.

As plastic surgeons, we explain that contralateral prophylactic mastectomy at the time of therapuetic mastectomy allows improved potential of symmetry of the recontruction. Even so, most of the patients that I see in consultation have already decided to proceed with contralateral mastectomy at the time of therapeutic mastectomy for reasons relating to the emotional toll of continued surveillance of the normal breast every 3 to 6 months. As I have described in previous posts, providing patients with all the necessary information before their primary surgical treatment allows for improved surgical decision making.

The EARLY act - issues and controversies

On March 26, 2009, Representative Debbie Wasserman-Schultz (D-FL) introduced a bill with a stated objective to increase awareness of the risks of breast cancer in young women and provide support for young women diagnosed with breast cancer. The bill (H.R. 1740) was referred to as the Breast Cancer Education and Awareness Requires Learning Young Act of 2009 or EARLY act.

According to a press release from Congressman Schultz, The EARLY act "directs the Centers for Disease Control to develop and implement a national education campaign to increase awareness of the threats posed by breast cancer in young women of all ethnic and cultural backgrounds, and the particular heightened risks faced by certain groups. The campaign will help young women and providers identify the specific threats and warning signs of breast cancer that lead to early diagnoses, and prevention efforts women can undertake to reduce their risks."

One would think that this legislative effort would have been applauded by most groups who are concerned with the care of women with breast cancer. In fact, there are many within the medical community who have voiced concerns about the legislation. The National Breast Cancer Coalition (NCCN) suggests that the bill is based on several false premises, contains incorrect information, and will not achieve these goals. The full text of their analysis is available here - http://www.stopbreastcancer.org//index.php?option=com_content&task=view&id=944&Itemid=179. The NCCN memo questions several premises in the bill (the comments that follow each point are outlined from the NCCN analysis):

1. That breast cancer in women under 40, an admittedly rare occurrence, necessitates a broad public health campaign and education in secondary schools and universities

The EARLY act is directed at women under 40. The NCCN suggests that this may be an inappropriate population to target with a large public health campaign. According to the American Cancer Society, during 2000-2004, only 5% of new cases and 3% of breast cancer deaths occurred in women under 40 years of age. For women aged 20-24, there were 1.4 cases per 100,00 women

2. That we know what women should do to prevent or lower their risk of breast cancer

There is very little known about what puts a woman at avoidable risk of breast cancer at any age. We do not know how to prevent breast cancer. Evidence for an association between dietary factors and breast cancer has been largely inconsistent and modest at best

3. That breast self examination and clinical breast examination are effective in saving lives in this age group

According to information on the National Cancer Institute website, breast self-exams cannot replace regular screening mammograms and clinical breast exams. Studies have not shown that breast self-exams alone reduce the number of deaths from breast cancer (http://www.cancer.gov/cancertopics/wyntk/breast/page5).

4. That ethnicity is sufficient to trigger genetic counseling and testing

The bill is based on the belief that women “including, but not limited to the African-American and Ashkenazi Jewish populations under 40 years of age” should contemplate genetic counseling and testing. Despite the association between mutations in these genes and breast cancer, only 5-10% of all breast cancer patients have BRCA1 or BRCA2 mutations. Scientists believe there may be other unknown genes that are strongly associated with breast cancer risk. However, the large majority of breast cancer cases are "sporadic" cancers; in other words, the individual has no known inherited predisposition to breast cancer

5. That there are significant differences in what we know and what we should tell women under 40 years old versus over 40 years old

The messaging about what to do about breast cancer raises exceedingly complex questions, many of which we do not yet have answers to. What this bill contemplates is a nationwide public health campaign that will reach out to millions of women with a message that may be misleading in some instances and pertinent to a tiny percentage. The important nuances of the issues will not be captured in this type of campaign, and will result in more harm than good.

In my assessment, there is value in this public spending proposal, notwithstanding the valid points discussed above. While young patients make up the minority of breast cancer patients, the economic and social impact of an illness in a young person has clear reverberating effects. The economic impact of days lost from work and the impact of illness on a spouse and children is devastating. Moreover, educating younger women may lead to discussion regarding breast cancer screening in their parents or extended family, leading to earlier diagnosis and lower treatment costs overall. I imagine that a 40 year old woman conversing with her mother or aunt regarding the importance of screening for breast cancer has real impact. These are the analyses that I'd like to see studied under the Obama administration's emphasis on comparative effectiveness.

Update from the 25th Annual Atlanta Breast Symposium....

I am excited to be attending the 25th annual Atlanta Breast Surgery Symposium.  This is the premier meeting dealing with advances in Plastic Surgery of the breast.  It is organized by many of my former colleagues from Emory University, where I spent 2 years in Plastic Surgery residency training from 1994-1996.  It is a forum for observation of live surgical procedures, exchange of ideas among international panel of plastic surgeons, and always a source of topical information that is directly pertinent to my daily practice.

Two interesting topics were discussed during the meeting.  Firstly, the role of nipple sparing or areolar sparing mastectomy for the treatment of breast cancer or for prophylactic mastectomy was reviewed.  While nipple and areolar reconstructive procedures have advanced significantly, it is still difficult to consistently reconstruct the nipple areolar complex to mimic the natural form in all cases.  The traditional oncologic surgical model considered removal of the nipple areolar complex vital for performance of a curative mastectomy in therapeutic cases, and necessary for complete risk reduction in prophylactic cases.  For several years, researchers have looked at the possibility of leaving the nipple areolar complex and studying the impact on local recurrence of cancer.  With certain criteria (involving tumors that are remote from the nipple areolar complex or less than a certain size, ) data is beginning to suggest that preserving the nipple areolar complex (or at least the areola) may not compromise the curative goals and can definitely improve the aesthetic outcome.  This is especially compelling since the role of prophylactic mastectomy has increased in the setting of BRCA genetic mutations, or during treatment of one breast, to reduce the chance of a new cancer developing in the untreated breast.  As I have observed in my own practice, and as many at the meeting have confirmed, bilateral mastectomy (where one breast is removed to cure the cancer and the other is removed so as to prevent cancer from developing in the other breast) is becoming much more common.  While this demands further study, women should definitely ask the breast and plastic surgeons about the role of nipple areolar sparing approaches in their particular case during initial surgical decision making.

The second topic of interest was the role of fat transfer or grafting in both cosmetic and reconstructive breast surgery.  It has been controversial to remove fat from one part of the body and add it to the breast solely from cosmetic enhancement of the breast size.  It was thought that the postoperative changes that could result from fat transfer might affect the ability to accurately interpret mammograms, and produce cysts or scarring in the breasts that would be confused with suspicious changes.  Fat transfer techniques have improved over the last decade, especially when used in facial rejuvenation.  If we can more reliably transfer living fat cells from one part of the body to the face, perhaps fat transfer could be re-examined for its role in the breast.  For several years, fat grafting to improve the results of breast reconstruction (such as adding fat to the tissues above an implant to soften the transition from the upper chest to the breast or to smooth the contours after flap surgery from breast reconstruction) have been done.  In fact, these are procedures that I do often for ultimate refinement in many of my breast reconstruction cases.

The main concern with fat grafting, especially for breast augmentation, is the possibility that the stem cells that are harvested in the fat, may release substances into the breast with unknown effect.  Might the transferred fat stimulate cancerous changes in breast cells in the future?  What about using fat transfer after mastectomy where the breast has been removed? Clearly, further study is needed, and board certified plastic surgeons are positioned to answer this question through further research.  I am optimistic about an increased role for fat transfer to the breast in the future.

Some Hidden Choices in Breast Reconstruction

The New York Times published an interesting article on breast reconstruction ( www.nytimes.com/2008/12/23/health/23beauty.html?em).  The premise of the article was that some plastic surgeons do not offer their patients all of the available options for breast reconstruction because they are not proficient with all of the techniques.  The was some suggestion that some complex surgical options are not discussed by plastic surgeons at all because the insurance reimbursement is disproportionately low, which deters some plastic surgeons from performing those procedures at all.

I have discussed making decision for surgical treatment in earlier posts.  This article highlights that some women are making reconstructive choices based on only limited information.  Amy Alderman, MD is quoted in the article, and she highlights a larger problem that many women who have breast cancer are not even made aware that reconstruction is available to them, and that limits the decision making process one step before a patient may even see a plastic surgeon.  

Remember that these issues may even affect the initial surgical decision options.  How many breasts surgeons discuss breast conservation therapy using oncoplastic techniques, where a plastic surgeon may be able to reshape the remaining breast tissue at the time of  extensive lumpectomy to prevent a breast deformity?  How many breast surgeons discuss skin sparing or nipple sparing approaches in prophylactic breasts surgery?  If a breast surgeon is being reimbursed disproportionately high to place a MammoSite catheter in the breast in their office, is there a disincentive to discuss mastectomy and the fact that reconstructive surgery is available?  How many breast surgeon discuss the Women's Health and Cancer Rights Act at the time of initial surgical decision making?

What I strive to do in a preliminary consultation is to offer patients a general overview of all of the available surgical options from implant based techniques to autologous techniques, using a patients own tissues.  I hope to outline the different surgical approaches including microsurgical techniques.  What is even more important, however, is realizing that the shared decision model demands a customized risk factor analysis to take be performed which allows patient to make more informed choices.  

While some patients find the option of using their own tissues for breast reconstruction attractive because of the possibility of improved body contour if abdominal tissue is used, they may be at higher risk of complications related to comorbidities like hypertension and diabetes, or patient risk factors like high BMI (body mass index), previous abdominal incisions, or smoking history.  While some find options of using breast implants for breast reconstruction more attractive, they may be at higher risk of complications if they have had previous radiation therapy to the breast or may require post-mastectomy radiation.  There is also a higher inherent risk of re-operation related to scar formation around the implants and implant rupture.  There are also aesthetic limitations that may be inevitable when implants are used for breast reconstruction, especially if an implant is used to reconstruct one side only.

A shared decision model relying on providing the complete range of options to patients and performing a customized risk factor analysis for possible complications of each option in each patient is the current model that I prefer.  Patients need to be informed of their rights under the Women's Health and Cancer Right Act at the time of initial diagnosis of breast cancer, that may precede their initial surgical evaluation by several days or weeks.  

There are several excellent books that women should consider reviewing at the time of their initial breast cancer diagnosis that will allow them to ask better questions and make more informed choices for regarding breast reconstruction - A Woman's Decision: Breast Care, Treatment & Reconstruction and The Breast Reconstruction Guidebook.

Back into the blogging mode...

I was reminded by a patient that blogging actually involves updating my posts with some kind of regularity!  Well, I do appreciate that advice and I am back to continue what I started back in the spring.  I think that I was looking at each post as a chapter in a textbook rather than as a running discussion of topics of interest to me and those involved in treatment of breast cancer.  I would appreciate any comments from readers regarding topics that I can blog about and I will try to get back in the habit of posting more regularly.

This month I have several breast reconstructions scheduled.  Interestingly, all of the cases are bilateral reconstructions, and in 3 cases, the cancer is only in one breast and the mastectomy is being done prophylactically, and in 1 case, the patient has tested positive for a BRCA gene mutation and is electing to have prophylactic bilateral mastectomy.

I recently read a book by Jessica Queller called Pretty Is What Changes: Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny. She is a television writer in her mid 30s who is tested for the BRCA gene mutation after her mother dies of ovarian cancer, after surviving breast cancer.  It is a frank account of her emotions upon learning the results and how she dealt with the choices she had, ultimately choosing bilateral mastectomy and reconstruction with tissue expanders and implants.  She did seem to suggest that a female plastic surgeon was somehow more "qualified" to understand her ordeal, though I would suggest this as a generalization.  In any case, I thought it was a timely book, considering that the BRCA gene mutation testing is inevitably going to become more common, and prophylactic mastectomy seems to be a choice that many more patients will be considering.  

I am aware that women often choose to have a mastectomy of the normal breast at the time of mastectomy to treat the breast with cancer (prophylactic on the normal side, therapeutic on the side with cancer).  What I hear from women who make this choice is that the uncertainty of knowing what the future holds if the normal breast is not removed, the need for constant mammographic screening, the question of why they got breast cancer in the first place, which by itself serves as a risk factor for the development of breast cancer in the future, leads many women to consider bilateral mastectomy.  With reconstruction outcomes improving, I think that women see a bilateral mastectomy with reconstruction as an empowering choice.

As always, I look forward to hearing from readers especially for suggestions regarding future blog posts.