The following appeared in NOW-NYC newsletter in 1998:
Notes from a Breast Cancer Activist
By Ann E. Fonfa
When I left the hospital after breast cancer surgery on January 13, 1993, I sent a letter to 43 women--friends and family--with the facts of the breast cancer epidemic and a BSE guide, and encouraged them to take care of themselves. An activist approach, I thought. That was 5 years ago.
Since then I realized that there is so much to know about breast cancer, and so little that is known. Information is the best weapon people have, and sharing information pushes change forward more rapidly. I spend a lot of time attending conferences, meeting activists, researchers, clinicians, genetic counselors, and others. I hand out a flyer called "Random Thoughts," presenting my ideas about new ways to view these issues. I share reports of these events with breast cancer activists groups around the country.
Women health activists, particularly the National Breast Cancer Coalition, began to ask for more money for cancer research and Congress granted some in 1992. Then, the question arose, how is the money being spent? Soon activists began demanding a seat at the table, and now Department of Defense (DOD), National Cancer Institute (NCI) and other government panels include consumer representatives. Is this enough power to change the direction of research activities? I don't think so, and yet it is an important step, enabling us to move more quickly toward prevention and cure two neglected areas. UPDATE 2000: I attended the DOD "Era of Hope" Conference which featured many advocates on every panel. So some things DO change.
Women were regularly put under anesthesia, and awakened to discover that they had lost their breast(s), lymph nodes, muscle, and more. There were no biopsies, no informed consent, as late as the 1970s. Doctors had spoken up against the Halstead radical mastectomy introduced in 1896, for some fifty years before it disappeared as a treatment.
That is how long it took for the preferred treatment to change to a total mastectomy, and now to lumpectomy.
Women with breast cancer are aggressively treated. Breast cancer is among the most treated of all cancers. Is this a continuation of the long tradition of medical over- treatment of women, such as hysterectomies and cesarean sections (always justified by doctors)?
In fact, breast cancer survival statistics have not greatly increased since those numbers began being recorded. The last 5-year report showed a possible increase in survival rates among Caucasian women under age 50. The next 5- year report may show this trend more clearly. Where does this leave older women, who get breast cancer at a much higher rate than younger women? Or African-American women, who have been shown to do much less well at all stages of disease than other groups?
Women are misled often in the world of breast cancer. Many doctors state, with total authority, statistics that are misleading or wrong. An example is the use of radiation after lumpectomy. A study financed by NCI (Protocol B-06) has demonstrated almost identical survival in each arm, or branch, of the trial, whether a woman was randomized to receive mastectomy, lumpectomy with radiation, or lumpectomy alone.
Yet time and again, a physician tells a woman that lumpectomy with radiation is the key to survival. Its not for women with tumors under 2 cm. and no lymph node involvement. That combination of treatments will reduce the risk of local recurrence, but doesn't affect survival. Activists must find and spread information that is honest and useful. Getting correct information requires lots of time for research, and lots of energy.
I suggest that clinical trials be open to women who have not had chemotherapy or radiation, if the trial is looking at something other than chemo or radiation. Some women do not want chemotherapy, yet want to participate in trials of other treatments, although there aren't many. Why can't an arm of every trial include people using vitamins and supplements? Then, comparisons could be made to examine efficacy, and more specific trials could be devised.
Another concern for activists is genetic testing. Scientists have found several genes that bear on breast or ovarian cancer. But these genes may not be the only factors involved in cancer development. They have only been studied in high-risk families; the risk level has been established at a lower level than originally speculated; there is no recognized prevention for breast cancer even if a woman has the known genes; and, women with the gene may not develop more aggressive disease than other women who get breast or ovarian cancer.
If a woman tests negatively she is still at the risk level of the general population, expressed as a 1-in-9 lifetime risk. Women in high-risk families have said that genetic testing has resulted in conflicts among family members. Current cost for the test is approximately $800. Family history represents only 5-10% of all women with the disease.
Activists need accurate information to make decisions, such as whether to support one new research proposal, or another. As a feminist activist, I am interested in ideas rejected by the mainstream. I have been studying alternative cancer therapies for 4 1/2 years.
Guess what? I found that almost any idea not produced by the pharmaceutical industry has been rejected or left unexplored. Very little money has been allocated to explore alternatives. Yet, the most telling argument used against them by physicians and others is that alternatives have not been scientifically studied.
In most states physicians will face penalties if they prescribe anything but chemotherapy, radiation, hormonals, and surgery.
A bill currently before Congress, The Access to Medical Treatment Act (S.578/HR.746), will protect doctors who propose other treatments to patients in need.
The worst words I hear from patients in distress are My doctor told me to go home and put my affairs in order, meaning that chemotherapy hasn't worked for that patient. The language blames the patient: she has failed chemotherapy. Yet, there are many alternatives to try; many different treatments work some of the time for some people.
How many women know that for a new chemotherapy drug to gain FDA approval it is not required to be extremely effective? The proof is not in disease-free survival or survival, but simply producing a response for a pre-designated time period gains approval.
One problem is that no one really knows which treatment will work for whom. Physicians don't know. Chemotherapy, as every other treatment, only works some of the time for some patients, but it is not presented that way. Statistics can be used to present a somewhat false picture.
It is often said that chemotherapy is effective with approximately 30% of women who take it. That means that 7 out of 10 will not benefit; some have already got meta-static disease and the others didn't need any chemo- therapy to survive. Too many of us are frightened into making decisions with very little information, and much too quickly after diagnosis. The fact is that a cancerous tumor will have been growing for at least 6-10 years by the time we find it (through self-exam, mammograms, or clinical exam).
Sentinel node biopsy: Underarm lymph nodes are routinely removed with breast surgery (called axillary node dissection). This technique has been used to determine the stage of the disease, but it is invasive, slows recovery, and puts women at risk for a chronic condition called lymphedema. All women who undergo this surgery have limited use of their arm, for fear of developing lymphedema (permanent swelling of the arm). It can occur at any time in their lives.
Sentinel node biopsy refers to a new surgical procedure that uses a dye and/or radioactive material injected into the area. It enables physicians to remove only one or two lymph nodes that show the dye. Women who show a malignancy have further axillary nodes removed; those with negative (clean) nodes will not need further surgery and will be at reduced risk for lymphedema.
A wonderful step forward, but one which was first introduced at Sloan Kettering in 1976. I ask why it took 20 years for a technique that could have been fully vetted within five years!
A research area known as chemoprevention looks at natural substances using pharmaceutical standards. For example, Vitamin A (retinoids); Vitamin D (deltoids); lavender (perillyl alcohol); orange peel (limonene), etc. These substances are being explored as prevention for women not yet affected by breast cancer, and could lead to non-toxic treatments as well.
Very little money or research is allocated to explore environmental factors and breast cancer. As a feminist, I contend that this neglect has been fostered by the chemical manufacturers, petrochemical companies, and others. We must encourage dialogue and research into this arena. Current research indicates that PCBs and pesticides are interfering with hormones and disrupting our endocrine systems.
Clearly, our air, water, food, and overall environment have an ongoing impact on health. Known breast cancer risk factors include: no, or late, childbearing; late menopause; early menarche; membership in a high-risk family. But breast cancer risk factors for 70% of patients are still unknown.
I have chosen not to have reconstruction. I am allergic to plastic (the silicone envelope holding saline). I don't want the long surgery needed for a "tram flap,." And, I want to make a political statement--no prostheses (so far) for me.
The "Tram flap" is interesting. It is presented to women as a tummy tuck. This side benefit supposedly gives women a flat abdomen, but it removes muscle that cannot be regenerated. The new breast is "gravity-proof," so often the other breast is "lifted" to match. The resulting reduction in sensation may not be fully explained by the physician. The new breast usually cannot experience sexual feelings, nor can it nurse a child. I was told that my second breast (while I still had it) could be reduced to match the smaller breast they would of necessity construct for me.
I wonder if this disease would be well on its way to being conquered if a large group of one- or no-breasted women stormed Congress. My mother, an old-time activist, suggested that we march wearing half a bra on our heads. That would attract policy makers notice!
Activists need to decide which issues to focus on and which side of the issues to come in on. For instance, is it a good idea to ask for more research money when that money might continue to fund someone's lifetime of research into an area that has not panned out but has been under scrutiny for 20 years? A lot of money is raised privately for hospitals and cancer centers, along with government funding, yet the 25-year War on Cancer hasn't really produced many victories for women.
Is more money the answer? Instead, I think new ways of looking at the questions are called for.
From the Faces of Breast Cancer Gallery
March 27, 2000 article
Ca Cancer J Clin, 5/04
LINK to interveiw with Ann, 2006
Breast Health Project - Envisioning a World Without Breast Cancer
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