Meredith E. Lewis

Biology 248: Disease and Discrimination

1-26-98

Defining "stigma", as it relates to infectious disease, seems like an simple task. A newspaper chronicles that a young child has been forced out of school, because he is HIV Positive. The Bible recounts the prejudice against lepers, a discrimination that prevails in the third-world today. These examples explicate our prototypical understanding of stigma. We ask why...Why have we formed stigmas? Is it because they are infectious? Contagious? Is there is an element of fear attached to the presence of such a victim, this human contagion in our societal midst? Do we not approve of the lifestyle choices that might be involved? What are the ethical issues at stake? These are the common queries posed in the endeavor to understand and rectify our prototypical idea of a disease stigma. But could there be another dimension to this notion of "stigma"? Might a disease that is not contagious, or not "infectious" in the sense that it is caused by invading microorganisms, be stigmatized? And what about internal stigmas? If a stigma refers to a "mark", a mark that identifies the victim, what if that mark is felt from within, causing a victim to feel victimized? If that disease sets a person apart from her normative group in society, why should she not feel stigmatized?

Upon initial reflection, breast cancer does not seem to be a disease against which society has formed a stigma. One might ask how a disease that is neither contagious or caused by controversial behavior could be stigmatized. Deeper reflection and investigation reveals another reality, however. There is a stigma surrounding breast cancer, and it is two-fold.

Breast cancer was once simply classified as "cancer". Diagnosis meant death. Since then, early detection and advances in treatments have changed the patient's prognosis considerably. Since the odds of beating this cancer are best when detected early, it has become the woman's responsibility to be screened (i.e. the Mammogram) regularly. If she is not, she risks the "it's your fault" scenario...the "poor lifestyle choice" scenario, akin to the link established between lung cancer and smoking. Furthermore, recent books like the Breast Cancer Diet, which maintain that certain foods eaten or avoided may prevent the onset of such a cancer, help to classify breast cancer as a preventable disease. If a study is published that heavy women are more apt to develop cancer, might we not be less sympathetic towards such patients, because they could have prevented their sickness? While we applaud research and developments that have changed the "death" prognosis into one of hope, there is a danger involved in classifying a disease as even partly preventable, as it has the potential for placing blame or guilt on the patient.

The second-side of this cancer's stigma relates to the normative role of the sick. If a person is classified as being sick, she is allowed to withdraw from her role in society, seek treatment, and simply be Sick. What about the "lucky" patient, the one with the "early diagnosis"? A tiny tumor may be removed through what is called a "Lumpectomy", instead of a radical Mastectomy, or removal of the entire breast. She may be able to avoid Chemotherapy treatments, which can cause a physical marking through weakness and hair loss. Nevertheless, she will have a Lumpectomy. She will probably have radiation treatments, intense on-the-spot x-ray doses, every day for six weeks. They will give her a "sunburn" and possibly a great deal of fatigue, in addition to the daily hassle of an every day doctor visit and the psychological distress often associated with those large and frightening x-ray machines. These patients may have to take a follow-up drugs, like Tamoxifen, which inhibits Estrogen production in the body, and can cause premature menopause. This woman who is not "sick", according to our "sick-in-bed" definition of sick, carries on with her job, her household, her life. She lives her life while preserving her life. This woman may, however, carry around an internal stigma. She has the physical scars, the sunburn, the markings of stigma...but no one can see those. Her stigma is internally felt; she has been marked by this invasion of her body. Something in her life has set her apart from other women. This "stigma", compounded by society's growing expectations of women to prevent the disease in the first place, create a double-edged, often too-invisible sword.

An examination into the literature of a people will often reveal that society's cultural ethos. Perhaps Internet sites, as modern "writings", will disclose the stigmas regarding breast cancer suspected and discussed above. Choosing which web pages to examine was a difficult task, there being thousands of such sites. In the end, three were picked, one from each of three pre-determined categories. The Public Sector was assumed to be best depicted by, or at least according to our prototypical view of such a "sector", by the American Cancer Society's site. The Breast Cancer Fund of San Francisco denotes the Private Sector, the Commercial by the manufacturers of Novadex, Zeneca Pharmaceuticals.

http://www.cancer.org/

The American Cancer Society is an immense clearing house for every kind of information on all sort of cancers. It's initial menu contains: Your local ACS; Cancer Info; News Today; Research; Giving; ACS & You; Media Services; and a Search Engine. For basic information on breast cancer, "Cancer Info" is a good place to start. Links will appear to: "What is it?"; Prevention & Risk Factors; Detection & Symptoms; Treatment; Survivorship; and FAQ. A list of "Other Breast Cancer Resources" appears at the bottom. To obtain more specific information, utilizing the search engine might be a better method. "Breast Cancer" brings up a total of 961 documents, mainly scientific articles on such topics as "Weight Gain and BC Risk". These articles are not difficult to read or understand, if you have a little background in the vocabulary of the disease. The PR segment will link you to your local American Cancer Society headquarters, or display information on how to get involved with the popular "Relay for Life" or the "Great American Smokeout".

The AMCS's site does make one aware of the small, though significant, role breast cancer plays in this entire fight against all sorts of cancers. To a patient, that this massive effort has been launched with the intent of saving lives like hers, must be impressive and reassuring. At the same time, since it does not focus on breast cancer alone, she may not obtain a feeling of "solidarity" in a community of like-afflicted women, that a site focused solely on her ailment might be able to provide. Furthermore, there is quite a bit of information on possible causes of breast cancer and preventative schemes. To a woman who has already been diagnosed, this information is not helpful and could entice a measure of guilt that she did something to cause her illness. Nevertheless, she will likely recognize the importance of this information to the "rest" of the public. The Cancer Society's slogan "Hope. Progress. Answers." nicely summarizes the extensive, though often overwhelming, resources of this site.

http://breastcancerfund.org/

The Breast Cancer Fund, a not-for-profit, privately funded group out of San Francisco, maintains an impressive site with a host of information. By discovering and utilizing new sources of funding in the private sector, they appropriate grants for research, education, patient support, and advocacy. The visually-pleasing site is subdivided into nine essential units: About TBCF; (facts about) The Disease; Grants (partial listing of projects); Newsletter (current and back issues/articles); Arts and Healing (links to the Susan Gray quilt project, "Raging Light", and Art & Outrage); Calendar of Events; Advocacy; Resources; and a link to get in touch with TBCF.

The "Facts" section is fairly basic, highlighting statistics, explaining research efforts, and defining treatment options. Links to more in-depth articles are provided, as well, but this site is not top-heavy with scientific terminology. What the site lacks in science, it makes up for in its support potential for patients and caregivers. It is up-beat, positive, energetic, charged, and interesting, and a great example of a massive grass-roots campaign--of energy and hope--in fighting against this disease. A striking element of the site is the link to a gallery of scanned art and images, that will bring anyone who has known a breast cancer patient to tears:

TBCF site does address and confirm the idea of "stigma" previously discussed. The Fund exists to forward research and to appropriate funds to those areas of private psychological support for patients and their families, areas that are often missed due to the sometimes "invisibility" of this disease. The Fund recognizes that breast cancer patients fight an emotional, as well as a physical battle, with their health and well-being. They are, in essence, a group that has been set-apart. This must be recognized and care and attention should be delegated to care for the "whole woman" whose life has been so changed.

Zeneca Pharmaceuticals, which describes itself on its site as "a major international science based group which provides innovative products to improve health, nutrition, and quality of life," is the maker of Nolvadex, trade name, Tamoxifen. This drug is an Estrogen-reducing treatment for women diagnosed with Estrogen-feeding breast tumors (at many different stages of development). Since they are the makers of Nolvadex, it was assumed that they would provide extensive product information to potential takers of the drug. This assumption was correct, but finding the information was very difficult. The above site name is a sub-site of the its larger global site:

This site had a search engine which yielded three articles on Nolvadex, all on "Zeneca in the News". The link to "products" simply listed "Nolvadex" as one of its drugs, but gave no further information. The global site listed links to the Zeneca sites maintained for specific nations. The site www.usa.zeneca.com led to a list of products at www.usa.zeneca.com/pharm/index.htm. Here, finally, there was a link to:

which gave the desired in-depth product information on Nolvadex. Questions such as "What is Nolvadex?" and "What are possible side effects?" are addressed in detail. The site claims that the information presented has only been approved for use in the United States, however, which is why finding the site proved to be so difficult. Once discovered, however, the time spent on the search proved to be worth it. The information was excellent and complete. The fact that the information was being provided by those who profit from its sales must be taken into account, but the clinical trials yielding the displayed results were FDA approved, of course, and confirmed.

The decision to take Novadex is often a very difficult one to make. There are a host of serious side-effects, one being an increased risk of developing ovarian cancer. Since it will reduce the body's Estrogen production, a woman may go through premature menopause. Forgetfulness, mood swings, and hot flashes are common. A woman who decides to take Novadex to either reduce her chances of a reoccurrence of her cancer, or to keep an existing cancer in check expects to experience many new and unpleasant changes in her body. By fixing or helping one area, others are negatively affected. That a woman has to make this decision for herself, is akin to deciding whether or not to have a certain potentially life-saving surgery. Will the surgery be successful? Will I survive the surgical procedure itself? Essentially, the woman has the choice, and the responsibility for her health is entirely within her control.

Breast cancer, although not an "infectious" or contagious disease, is still a stigmatized disease. Society expects women to try to prevent the onset of the cancer, and when it occurs, to continue to function normally within their usual roles. A woman must make crucial decisions about her own treatment plan, decisions that make her responsible for her recovery...and any and all negative side-effects along the way. If a woman is not "sick-in-bed" sick, she will probably carry on with her life and her role, but she will likely feel a change from within. Something very significant has happened to her that has set her apart. That a woman diagnosed with breast cancer has the potential to experience the feeling of being so "marked", is proof enough that there is a stigma attached to this all-too-common disease.