The Setup - Part I

Please be aware that this blog incorporates discussions of surgical procedures and post-operative conditions that may include graphic detail or relevant images. Also please note that there will be images of female breasts. Additionally, articles and references that are not directly linked are cited at the end of each blog entry.

Dr. Molly Niedermeyer before diagnosis & treatment

Back in August 2011, Dr. Molly Niedermeyer was diagnosed with Stage III-B breast cancer, a severe diagnosis (cancer diagnoses range from Stage I - IV) that not only included immediate breast tissue but lymphnode involvement as well. A prominent naturopathic physician in the Seattle area, she underwent a radical mastectomy in addition to chemotherapy and radiation treatment. Throughout her treatment, she recorded her journey on a blog to keep friends and family updated of her progress in addition to using her writing to process her experiences. After completing nearly a full year of treatment, she was faced with a choice: whether or not to replace the mastectomy scar and radiation burns on her chest with a reconstructed breast. 

What was interesting about Dr. Niedermeyer's discussion around such a very personal decision was her considerations to not only her psychological well-being (i.e. would she feel happier/ better if she decided to undergo breast reconstruction) but also the physiological ramifications (i.e. would she compromise her immune system after undergoing a second extensive surgery). She periodically debated with herself whether she was emotionally ready to have her body transition again, whether "symmetry" was important to her, and whether a breast prosthesis would suffice. Most of her postings relating to breast reconstruction focused around three concerns though: the physiological toll, concern for her husband's preference, and her sense of physical attractiveness. Wanting to make an educated decision on the matter, Dr. Niedermeyer engaged in extensive research ("Breast Reconstruction 101" - 10/1/2012 posting), consulting with three surgeons and various other medical colleagues, because according to her initial research "there just is NOT great, pragmatic, heartfelt, informative treatise on the subject.  There are bits of that but not in a comprehensive way." Dr. Niedermeyer found how reconstructive surgeries were performed but there was limited information that was directed at informing consumers/patients. Finding her perspective and approach interesting, I was inspired to investigate the history of breast reconstruction and if psychological research supported the assumed benefit that the surgery could provide to breast cancer survivors.    

The Background - Part II

Current statistics indicate that one in eight women will be diagnosed with breast cancer at some point during their lifetime and the National Cancer Institute projects that 226,870 new cases of invasive breast cancer will be diagnosed among women and approximately during 2012 (NCI, 2012). While newly diagnosed invasive breast cancer rates have mostly stabilized since 2003 and mortality rates have declined by 2.2% per year from 1990 to 2007 (American Cancer Society, 2011), breast cancer is still one of the leading types of diagnosed cancer. The last two decades has led to overall greater survivorship rates mostly attributed to cancer treatment breakthroughs and improved early detection of the disease, sometimes one to three years before symptoms of disease would be noticeable (ACS, 2011). Although likelihood of survival has increased, it is difficult to put into words the emotional and physical trauma that women endure upon receiving a diagnosis and their battle with cancer.

One form of treatment that has increased likelihood of survivorship is the use of surgery, in particular total mastectomy (removal of the whole breast) or radical mastectomy (removal of breast, lymph nodes, and chest muscle). Every year, 80,000 or so women have one or both breasts removed for a cancer-related condition in the United States.

Dr. William Halstead

Referring to the timeline I created on another website, instances of breast cancer have been reported as early 1600 B.C.E. in Egypt, but at the time treatment for the disease involved cauterizing the cancerous cells. Oftentimes, women would not survive the procedure. Thus, reports indicate that women opted out of  treatment and instead lived with the disease. 

The first radical mastectomy was performed by Dr. William Halstead in 1889, but Halstead refuted the proposal of breast reconstruction, insisting it was a "violation of the local control of disease" and insisted secondary operations not occur on the mastectomy site for fear of "sacrifice[ing] the patient to disease." Approaching cancer treatment from a strict medical prospective to completely eliminate the disease, Halstead set a precedent for radical mastectomies that focused on sacrificing the entirety of breast tissue (including lymphnodes, part of the chest wall, and in some circumstances, parts of the rib) to ensure likelihood of patient survival. Halstead's authority in the field limited the experimentation with breast reconstruction for nearly 100 years, his teachings so predominant that successful attempts at breast reconstruction utilizing muscle and musculocutaneous flaps (using muscle, tissue, and skin) went largely ignored. However, of the women and surgeons willing to attempt reconstructive work, oftentimes it required multiple surgical visits, increased scarring, and failure of the musculoucutaneous flap methods.

Reportedly, between 1910-1964 about 90% of US surgeries for breast cancer were Halstead mastectomies. What much of the medical discourse during those times seemingly failed to acknowledge however was the extensive disfiguring effects of Halstead's radical mastectomies for women. [A picture of a Halstead Mastectomy]. The late 1960s and early 1970s saw the advent of surgeons attempting tissue-sparing mastectomy procedures that sought to contain tissue removal to just the infected areas instead of Halstead's total eradication method. This method was promoted after research demonstrated that  Halstead's original procedure of radical mastectomy offered no improvement in survival rates in comparison with the less invasive and modified forms of radical mastectomy.

Timmie Jean Lindsey in 1962 before surgery

The next major turning point in the history of breast reconstruction occurred in 1962 when Thomas Cronin & Frank Gerow worked with the Dow Chemical Company to create the first silicone breast implant. Following World War II, Dow Chemical Company explored commercial uses for silicone and collaborated with the Houston area surgeons after they discovered that silicone implants were more pliable and "life-like" than the options available at the time.  Timmie Jean Lindsey was the first woman to receive the new silicone breast implants, originally designed for women who had undergone mastectomy. In an interview she conducted with the UK Daily Mail back in 2007, Lindsey discussed being approached to become a test case for surgery that she did not need at the time, nor necessarily desire. Lindsey had originally entered the Houston area hospital to have tattoos on her breasts removed and was instead told by Gerow that she would be an ideal candidate for a new procedure to reportedly help women with "sagging breasts." According to the interview, it was likely that Gerow was playing on Lindsey's insecurities and had wrangled up additional test subjects in a similar manner, including wives of medical students, without fully informing them of risks of the procedure or possible side effects. A colleague questioned if Gerow and become so insistent with the treatment because Gerow "liked big breasts" and needed to compete with surgical colleagues who had been in the process of creating heart implants.

Timmie Jean Lindsey in 2007 at age 75

What is perhaps most intriguing about this time period is that none of the articles evaluated for this post identify actual women who received implants because of previous mastectomy operations. Most describe the initial Dow Cronin-Gerow implants as being used for elective plastic surgery breast augmentation. So although Cronin & Gerow may have suggested that women who had undergone mastectomies would benefit from the development of the implant, the largest benefactors were the surgeons and chemical companies, including Dow, that were financially compensated with women's increasing bust lines. However, Lindsey reported that she has taken comfort in the fact that her contribution to medicine has aided "thousands of women," including her own granddaughter that underwent a double mastectomy in her breast cancer treatment and full reconstruction.

As difficulties and health concerns related to silicone implants began to surface, other forms of reconstruction began to appear in the 1980s, including the TRAM and DIEP musculocutaneous procedures. Breast reconstruction began to include discussion on nipple and areola recreation, and has largely relied upon medical tattooing since 1986. Since the shift to break-conserving surgeries, and the 1980s, women have had fewer breast scars, greater preservation of natural skin color and texture, and "reduced operating time, fewer revision surgeries, and greater patient satisfaction."

Latissimus Dorsi Flap

Psychologists in the early 1970s recommended that women should wait before pursuing reconstruction options so that they were given "time to grieve for the missing breast [and] to accept the loss" so that when a new breast was constructed they would have greater acceptance of the new form and higher body image satisfaction (Harcourt & Rumsey, 2001). Conversely, research performed in the mid-90s proposed that women opting for immediate reconstruction might actually be indicative of a positive adjustment to the diagnosis. However, contemporary research indicates that there is not necessarily an "ideal" time for reconstruction (immediate vs. delayed reconstruction), and that satisfaction with the outcome of the procedure is generally high regardless of when the surgery is performed (Harcourt & Rumsey, 2001). 

Current breast reconstruction options include mammary implants and/or expanders and tissue flap procedures. And while surgical advances have been made for treating breast cancer and reconstructing the lost tissue, no degree of surgery will provide a physically functioning or physiological attributes of a natural breast. Furthermore, there are inherent risks and side effects of each form of reconstruction procedure. With this in mind, according to Harcourt & Rumsey (2001) "electing to undergo breast reconstruction therefore carries with it the potential for significant physical and psychological benefits but also the chance of profound physical and psychological distress.” 



Harcourt, D. and Rumsey, N. (2001), Psychological aspects of breast reconstruction: a review of the literature. Journal of Advanced Nursing, 35: 477–487. doi: 10.1046/j.1365-2648.2001.01865.x

The Psychology - Part III

Unless otherwise noted, information for this section was drawn from a literature review about the psychological history of conceptualization of breast reconstruction by Harcourt & Rumsey in 2001.

Demographic information obtained from various cancer related studies has indicated that typically younger married white women from higher socioeconomic backgrounds are more likely to decide upon reconstruction. Motivating factors have been identified that include attempts to "restore feelings of femininity and wholeness, avoid disfigurement and deformity, improve self-confidence and to avoid an external prosthesis." Women often choose reconstruction as a manner of coping or even processing their mastectomy and battle with their cancer diagnosis.

The original research of the intersection of breast reconstruction and psychology predominately focused on the affective response of women who had decided upon breast reconstruction.  

Dissertation work (Covich, 1999) and previous research (Harcourt & Rumsey, 2001) reported that there were not significant differences  for measures of depression, anxiety, or self-esteem between women who opted for immediate reconstruction, delayed reconstruction, or no post-mastectomy reconstruction. Additionally, although original research hypotheses predicted that body image satisfaction would be higher for both reconstructive groups than for the mastectomy-only group, women who had decided not to undergo reconstruction actually reported higher overall body satisfaction than their reconstruction peers. Covich (1999) proposed that women most likely opted for immediate reconstruction hoping to "put breast cancer behind them" and attempting to diffuse their anxieties around possible cancer recurrence. Despite the process though of reshaping their chest to somewhat of its previous form, they reported similar levels of anxiety to other survey participants, possibly because as one respondent stated "I can't believe that anyone who has had cancer does not worry."

Although research results varied to some extent, Harcourt & Rumsey (2001) concluded at the end of their extensive literature review that there was not necessarily a psychological benefit at a group level for women who had chosen reconstruction in comparison with those who remained mastectomy-only. In fact, additional research proposes that women contemplating reconstructive surgery may face greater psychological distress due to the decision making process, undergoing additional medical procedures, fears of complications, ongoing physical pain as a result of implants and/or further tissue removal, dissatisfaction with aesthetic, or logistical outcomes of the reconstructed breast (Harcourt & Rumsey, 2004). Although complications are more uncommon now than in the past few decades, Deborah Yardley, who had already undergone a double mastectomy and "two years later, desperate to reclaim her femininity... underwent reconstructive breast surgery", died on the operating table after receiving double the recommended dose of anesthetic.

After roughly two decades with limited discernible differences in affective states for women between various groups, more recent work has focused on motivating factors, the levels of satisfaction with their decision,  social support, influence of medical experts, and attempting to map and understand the decision making process. For example, the top three motivating factors identified on a survey for choosing reconstruction included not having to wear an external prosthesis, increasing feelings of femininity, and to feel sexually attractive and avoid changes to their sexual relations (Contant et al., 2000).  Regarding the topic of sexuality, dissertation work has indicated that a positive shift in sexual satisfaction is likely to occur after reconstructive surgery, in addition to reported improvement in quality of life (Lee, 2000). Intimacy concerns are generally prevalent amongst all patients and books such as Intimacy After Breast Cancer: Dealing With Your Body, Relationships, and Sex by Gina Maisano help women to begin understanding and navigating what can be a difficult road.

Given the discussion of the bulk of research covered above, Harcourt & Rumsey (2004) criticized much of the research for approaching these topics retrospectively. Instead, they attempted to understand the process leading up to the actual breast reconstruction decision. Their article, which has been cited at least nineteen times, aided the critical discourse in the field in trying to expand the methodological "net" wider to understand the process women engage in addition to the outcome. Ultimately, the research pair from the University of the West of England attempt to specify the psychological needs of women when entering into the decision making process and trying to identify avenues to successfully meet those needs within the healthcare field.

Evaluating women's decision making processes on variables including the time it takes to make a decision, the degree of information seeking the patient engages in, patient's mood and their overall confidence in their decision has allowed the authors to break down female patients into three main categories of information-seeking, instant/immediate, and indecisive decision makers. Furthermore, most women in the study who were instant/immediate decision makers (i.e. would decide in the first meeting regarding their cancer treatment whether or not to undergo reconstruction) did not choose to have reconstructive procedures. The authors attributed this trend to patients' attentions being focused on the immediate stressors of the diagnoses and unable to give psychological attention and energy to contemplating additional "extra" operations. Women in the study reported feeling rushed to make a decision or that they did not fully understand the options available to them when communicating with providers. Contingent upon the different approaches women may take, Harcourt & Rumsey suggested that the healthcare field should formulate materials to disseminate information in a way that is fitting of the patient's decision making style and provide better emotional support: "Future research needs to examine ways of facilitating decision-making including the use of decision-aids, amongst women who find the decision especially difficult" (Harcourt & Rumsey, 2004). It is through this route that the authors propose positive increases to patient satisfaction regardless of their choice.

[Although not directly related, to gain an understanding of Harcourt & Rumsey's theoretical approach to research and patient care, please consider watching their video for the Centre for Appearance Research that they are co-founders of in England.]  Try this link if embedded video link is broken. 

Centre for Appearance Research from Back To The Planet on Vimeo.







Contant C.M.E., Van Wersch A.M.E.A., Wiggers T., Wai R.T.J., Van Geel A.N. (2000). Motivations, satisfaction, and information of immediate breast reconstruction following mastectomy. Patient Education and Counseling, 40 (3), pp. 201-208.

 Covich, J. L. (1999). The relationship between breast reconstruction and psychological adjustment when a mastectomy is necessary. The University of Texas at Austin). ProQuest Dissertations and Theses, , 159-159 p. Retrieved from http://ezproxy.lib.utexas.edu/login?url=http://search.proquest.com/docview/304541984?accountid=7118

Harcourt, D. and Rumsey, N. (2001). Psychological aspects of breast reconstruction: a review of the literature. Journal of Advanced Nursing, 35: 477–487. doi: 10.1046/j.1365-2648.2001.01865.x

Harcourt, D. and Rumsey, N. (2004), Mastectomy patients' decision-making for or against immediate breast reconstruction. Psycho-Oncology, 13: 106–115. doi: 10.1002/pon.711

Lee, R. F. (2000). Sexual satisfaction and self-image after post-mastectomy TRAM flap breast reconstruction. Gonzaga University). ProQuest Dissertations and Theses, , 102-102 p. Retrieved from http://ezproxy.lib.utexas.edu/login?url=http://search.proquest.com/docview/230622476?accountid=7118

 

Societal Impact - Part IV

A little over two decades ago, October was named National Breast Cancer Awareness Month, to help bring recognition to a disease that hundreds of thousands of American women were battling every day. The 90s and 2000s subsequently saw a flourish of activity related to giving breast cancer patients and survivors a very public face with the infamous pink ribbon, walks and runs, and promoting free or low-cost screenings and public education on early detection. Breast cancer has been further brought into mainstream societal recognition through popular television shows that may dedicate an episode or an entire storyline to women's battles with breast cancer such as the daytime soap operas, The L Word, Sex In The City, and even South Park (albeit an unconventional approach). Some tattoo parlors even get in on the action by allowing people to permanently remember and honor the way breast cancer has impacted their lives or the lives of their loved ones.

However, despite the outpouring of support and recognition for patients and survivors of the disease, there is limited discussion in popular culture around the availability of breast reconstruction options. While it is possible to find multiple and varied examples of breast cancer within popular media, it was far more difficult to find any representations of breast reconstruction amongst TV or film clips. Despite breast reconstruction's modern history over the last forty years, it was not until 1998 that breast reconstruction became a federal policy issue. The Women's Health and Cancer Rights Act of 1998 (Title V; Subtitle C) was signed into law by President Bill Clinton that mandated insurance providers cover minimum "(1) breast cancer mastectomies, lumpectomies, and lymph node dissections; (2) post-mastectomy breast reconstruction on both breasts; and (3) the costs of prostheses and complications of mastectomy, including lymphedemas." Before that point, reconstructive operations were seen largely as elective "cosmetic" surgery that third-party payers did not feel compelled to cover.




The Act provided a national message that women's health care was important, that women should have all treatment options available to them, and that breast reconstruction became "widely recognized as an important element in breast cancer treatment rehabilitation." Despite the passage of the bill, according a study and analysis of reconstructive trends across the U.S. completed in 2004, utilization of reconstruction procedures continues to rise at a rate of only 1% a year, which is comparable to the period before 1998. The study highlights four likely barriers to post mastectomy reconstruction: financial barriers, race-based inequalities in health care, regional differences in access to procedures, and limited patient knowledge. (As an aside, according to the 2004 data, Atlanta has the highest rates of reconstruction following mastectomy treatments and Hawaii has the lowest). In effort to combat the last aforementioned barrier, the American Society of Plastic Surgeons (ASPS) created the first annual Breast Reconstruction Awareness Day or BRA-Day, on October 17, 2012 to provide better education to women about their reconstruction resources and options, even pulling in celebrity singer Jewel as their spokesperson.

In attempts to lift the shroud of mystery surrounding outcomes following surgery, where historically women have only been able to look at photos from other post-op patients,  new survivor support groups have formed such as show-and-tell reconstruction circles as described in a 2012 Canadian interview with BRA Ambassador Theresa Quick and additionally backed by ASPS survey . These circles provide contemplative women the opportunity to see actual reconstructions, touch them, and ask women about their experiences with the surgery, outcome, aesthetics and functionality. It still waits to be determined how the advent of these new educational initiatives will impact future rates of breast reconstruction. However, as women are provided greater comprehensive education on their choices, they will be provided the knowledge necessary to make fully informed decisions.

However, it is important to note that some women actively choose to keep the scars on their chest from their mastectomy and do not attempt to recreate what they sacrificed. An article from the Atlantic in 2011 explained how reconstruction is not always the best choice for women, especially athletes who may not want to compromise anymore of their muscular structure or women who have simply come to embrace their new bodies. Some women even appreciate having a literal weight lifted from their chest and are not compelled to incorporate something "artificial" into their appearance. Breastfree.org is an entire support website and forum dedicated to women who have decided against reconstruction for "positive reasons", including pictures of women with and without breast-forms, because they might consider themselves to be "mature women who understand that love of spouses, friends, and family isn't dependent on having breasts." The choices women make not  to reconstruct are every bit as valid as those who do.  

Paradigm Shifts - Part V

The conceptualization and actual of breast reconstruction has undergone various paradigm shifts depending upon the deeply interwoven historical, societal, medical, and psychological factors at play.

Historically, as mentioned before, breast reconstruction did not really develop and flourish until 1962 when the remains of World War II chemical companies investigated new commercial uses for their products, resulting in medical implants. Women's rights overall in the 1960's and women's health movements specifically in the 1970's & 80's helped to draw attention to the radical mastectomies as the standard
treatment for breast cancer, which were unnecessarily disfiguring, as well as the absence of informed consent
in breast cancer surgery. The passing of the Women's Health and Cancer Rights Act of 1998 instituted principles that - for the most part given insurance coverage - equal opportunity of care and treatment for cancer and reconstruction be available to all women, including those who had been historically marginalized.

From an ontological perspective, within a classic disease model of medicine, cancer is something real that exists and needs to be mapped out, categorized and fully known in an effort to control the disease. Similarly, I would argue an ontological evaluation of breast reconstruction from a medical perspective would propose that the female breast, at its most basic form is a combination of human tissue, skin, and operative features such as mammary glands. However, while reconstruction cannot replicate a fully functioning breast, medicine believes in the creation of a breast form of tissue or implants to represent the physiological natural breast, so appearances remain.  The medical field has developed from entire tissue-removal to eradicate the disease at all costs, to operating under more judicious in attempt to salvage and spare as much as the tissue as possible, while still reducing likelihood of disease, a methodological shift that better served the patients physicians were attempting to help. The healthcare field has also arguably transformed from viewing women as research specimens to working to honor the unique concerns and autonomy each woman brings to the operating table, although the work is not yet complete. While there has been greater emphasis placed upon patient education and patient decision making instead of leaving everything in the hands of medical experts to make life-altering decisions on behalf of the patient, further efforts can still be made to incorporate patients more fully into the treatment planning process.

Within psychology, we have covered the ground in establishing very basic psychological/emotional affective related responses to diagnosis and treatment of cancer, such as higher rates of stress, depression and anxiety and lower rates of self-esteem or body image satisfaction. The field has evolved from that focus into identifying how women arrive at a decision to pursue reconstruction and their level of satisfaction with their choice, including their salient concerns (Harcourt & Rumsey, 2004), perceived necessity of information (Harcourt & Rumsey, 2004; Sheehan, Sherman, Lam, 2007), and contextual factors such as the influence of medical expertise or limited allotted time (Harcourt & Rumsey, 2004; Sheehan, Sherman, Lam, 2007). During that time, the methodology has changed as well in attempts to ground research in theoretical structures (Sheehan et al., 2007) and establish prospective studies (before reconstructive operations occur) to better identify the processes and mechanisms women employ in determining their desire for reconstructive surgery (Harcourt & Rumsey, 2001).

From the beginning of psychology's involvement with cancer treatment, the field recognized that while there was an existent disease, the disease was impacting the person in a multitude of ways were not restricted to physiological health and well-being. Psychology has sought to define and characterize the factors that influence the patient and presumably, the patient's capability to cope or fight the disease. Psychology has also attempted to understand the real experience of battling breast cancer, losing a breast(s), and adjusting to the changes to self-conceptualization that that experience will likely create, by interacting with women in more meaningful ways and engaging in more qualitative work. I propose that recognition of a woman's agency and experience through the cancer experience (which can include the rest of her life) is pivotal to beginning to evaluate and conceptualize the psychological ramifications that a cancer diagnosis can incur.

I valued and connected with the work of Harcourt & Rumsey, because their literature and research is seemingly imbued with a deep compassionate desire to understand the breast cancer experience as best as possible through the eyes of a cancer patient. They did not attempt to pathologize differing coping styles, decision making styles, and satisfaction levels and instead insisted that the provider system should change to fit the patient's needs, not the other way around. Breast reconstruction was evaluated as one of many possible options available to patients and the responsibility fell upon patient care providers to ensure that information was communicated appropriately to the patient and that the emotional support was present. This multifaceted approach for critique and contextual understanding lends me to believe that it closely aligns with critical theory.

Aside from attempting to understand the "lived" experience, critical theorists deal heavily in evaluating how oppression contextually operates and developing methods to disrupt the process. Psychology is already on the path to highlighting ways in which the medical system by and large systemically oppresses patient advocacy in the medical setting. Similarly, critical evaluation of the oppression discourse would not end there; in my survey of the literature I found very limited acknowledgement of the racial or socioeconomic attributes that limit access to reconstruction options. Furthermore, because the very nature of breast cancer targets a gender that has been a historically disenfranchised subset of the US population, it would be useful to psychology to examine if a possible existence of institutionalized sexism may positively or negatively impact patient care. When earlier statistics quote that only three in seven women receive information regarding breast reconstruction (Part IV), is that a result of medical negligence, or other personal or professional biases that may already be in place within the larger healthcare system? Psychology has the capabilities to begin collaborating with women and their experiences to identify where problems and barriers exist.  

Harcourt, D. and Rumsey, N. (2004), Mastectomy patients' decision-making for or against immediate breast reconstruction. Psycho-Oncology, 13: 106–115. doi: 10.1002/pon.711

Sheehan, J., Sherman, K. A., Lam, T. and Boyages, J. (2007), Association of information satisfaction, psychological distress and monitoring coping style with post-decision regret following breast reconstruction. Psycho-Oncology, 16: 342–351. doi: 10.1002/pon.1067