Zoe Christopher 2015

Through our free Information & Resource service, we provide unbiased information about breast cancer to anyone who needs it. You can speak one-on-one with a knowledgeable staff member so that you can make informed decisions about your health based on your personal values and priorities.

Whether you need help understanding the treatment options for DCIS, want to know what studies say about aromatase inhibitors, or have a question about environmental links to cancer, we’re here to give you evidence-based information you can trust when you and those you love are affected by breast cancer.

If you have questions or need information, please email our Resource Liaison Zoë Christopher at info@bcaction.org or give her a call at 415.243.9301, ext. 10.

In addition, we’ve assembled some Frequently Asked Questions below:

How can I tell if I have breast cancer? Lumps: The most common symptom found by women is a lump in the breast or chest area. Most lumps are not cancerous. In fact, in pre-menopausal women only one in 12 lumps turns out to be cancer. But you can’t tell whether a lump is cancer by the way it feels to you. New lumps and thickening of the breast should be checked out by a doctor right away. While a diagnostic mammogram may help, the only way to tell if any symptom is breast cancer is to have a biopsy done. This involves removing part of the lump to check for cancerous cells.

Breast Pain: There are 3 main categories of breast pain: cyclical (pain related to the menstrual cycle), non-cyclical and pain that is non-breast in origin. The most common of these is cyclical. You can track this by marking your level of pain on a calendar and marking when you’re on your period. You will then see if your pain is premenstrual or not. Cyclical pain has no relation to cancer; it is related to hormone variations.

Non-cyclical pain is far less common. It doesn’t vary with your cycle. It’s almost always on one specific area, and is not hormonal. Something in the breast tissue is causing it. It can be a sign of cancer, although this is the case only about 10 percent of the time, so it’s always worth checking out with your doctor, a breast specialist, or someone knowledgeable in the field who will take your concerns seriously.

Non-breast-origin pain is usually in the middle of the chest and doesn’t change with your period. Most frequently, it’s arthritis in the place where the ribs and breastbone connect, or in the neck (which radiates down into the breast).

Other signs of breast cancer can be redness of the skin of the breast, eczema of the nipple, or dimpling of the skin.

If you’re worried about any changes you find in your breasts, you should see a doctor and get it checked out. Then if it’s cancer, you can start working on it; if it isn’t, you can stop worrying.

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What are the signs of inflammatory breast cancer? Inflammatory Breast Cancer (IBC) is a relatively rare form of breast cancer (about 1-4%), and symptoms can include the following:

  • A warm swollen breast that does not change through the menstrual cycle
  • Skin that is red or appears dimpled like an orange (peau d’orange)
  • The sudden appearance of a lump in the breast or thickening of breast tissue
  • Rapid, unusual increase in breast size
  • Itching or pain in the breast
  • A nipple that is flattened or inverted, possibly with discharge
  • Swollen lymph nodes under the arm or above the collarbone

These symptoms often appear with IBC because the cancer is fast-growing and blocks the lymph vessels in the breast and skin. All of the listed symptoms may also be present with benign breast disorders. Different women have different symptoms and in some cases there may be no visible skin changes.

We know that if we find a lump in our breast, we should have it checked out by a doctor, but many women don’t know that you don’t have to have a lump to have breast cancer. Some women who have inflammatory breast cancer may remain undiagnosed for long periods, even while seeing their doctor to learn the cause of their symptoms. IBC symptoms are similar to mastitis, a breast infection, and some doctors will prescribe antibiotics. If there’s no response to antibiotics after a week, a biopsy should be performed or a referral to a breast specialist is warranted.

For more information, including pictures, personal stories, and links visit the Inflammatory Breast Cancer Research Foundation

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What is Paget’s Disease of the breast? According to Dr. Susan Love’s Breast Book (3d ed.), pp. 403-404:

“Paget’s disease of the breast is a form of breast cancer that shows up in the nipple as an itchiness and scaling that doesn’t get better. It’s often mistaken for eczema of the nipple – a far more common occurrence. [Paget’s disease of the breast is sufficiently rare to be covered by the Institute of Rare Diseases at the National Institutes of Health.] Paget’s disease is almost never found in both breasts (bilateral), so if you’ve got itching and scaling on both nipples, you’ve probably got a fairly harmless skin condition. However, if it doesn’t get better, you should check it out, whether it’s on one or both nipples. After a diagnostic mammogram, your doctor can biopsy the skin of the nipple, removing only about a millimeter or two of skin. If it’s Paget’s, the pathologist will see little cancer cells growing up into the skin of the nipple…

“There are probably two variants of Paget’s disease: one associated with an invasive cancer in the breast and one that involves only the nipple. Paget’s disease that involves only the nipple has a better prognosis than regular breast cancer. It tends not to be too aggressive, and usually the lymph nodes turn out to be negative.”

Like any other change in the breast (or elsewhere in your body), a change in the nipple should not be ignored. If you feel that you are not being given the treatment you deserve, speak up. Demand that extra test; get a second opinion. Don’t let your concerns be dismissed. After all, it’s you, the patient, who is taking the risk.

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What is ductal carcinoma in situ (DCIS)? Ductal carcinoma in situ (DCIS) is a lesion contained within a breast duct, the cells of which look just like cancer cells but are not life-threatening so long as they are confined to the breast duct. But DCIS can develop into a life-threatening cancer if the abnormal cells break out of the ducts and into surrounding breast tissue. Women are often told that it’s the earliest form of breast cancer, or ‘stage 0 cancer’ but some doctors refer it is as ‘pre-cancer’. DCIS is fairly common—many of us probably have it and may never know it. More and more women, approximately 55,000 this year, are being diagnosed with DCIS because of the increased use of mammography screening.

Somewhere between 30-50 percent of DCIS will go on to become invasive breast cancer if it isn’t treated. That means that 50-70 percent of women could safely ignore it and never have a problem. The problem is that we don’t currently have the technology to determine whether a woman’s DCIS will become invasive breast cancer or not. Because of this uncertainty, many women are over-treated. Treatment options include mastectomy, wide excision alone (like a lumpectomy), wide excision plus radiation, a combination of those with tamoxifen, or simply “watchful waiting” to see whether and how the DCIS progresses. Although DCIS is pre-cancer, the diagnosis comes along with the fears, questions, and difficult decisions of a cancer diagnosis.

The treatment (or non-treatment) that a woman diagnosed with DCIS chooses has a lot to do with how she feels about risk and how comfortable she is with uncertainty. Each woman should be given all of the available information and be encouraged to make the decision that feels best to her.

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What are microcalcifications? Microcalcifications are tiny calcium deposits in your breast that may indicate cancer, even when no lump is felt. Microcalcifications are not the cancer itself. As a result of improved x-ray technology and broader mammographic screening, more women are now dealing with diagnostic and treatment decisions related to a finding of microcalcifications. Most breast calcifications (approx. 80 percent) are associated with benign conditions; these calcifications are usually large, few in number, widely dispersed, and round. The term microcalcifications is often used for the smaller calcifications that are associated with malignancy; microcalcifications are usually more numerous, clustered, and variously shaped (rods, branches, teardrops). Between benign and suspicious calcifications is a gray zone of “hard to tell” calcifications which are often labeled indeterminate. Since physicians’ recommendations regarding indeterminate calcifications differ, women need to inform themselves about diagnostic options.

When calcifications are thought to be associated with benign conditions, a routine mammogram is called for in one or two (or more) years, depending on a woman’s age and risk factors. When suspicious micro-calcifications appear on a mammogram, but no lump is felt, either a needle-localization biopsy or a sterotactic core biopsy is recommended, so that breast tissue can be removed and examined under a microscope by a pathologist. These two kinds of biopsies are the only ways to find out whether indeterminate microcalcifications are associated with cancer.

—Excerpted from the Women’s Cancer Resource Center article “Breast Calcifications: Beware If a Six-Month Mammogram Follow-up is Recommended.”

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Is the AMAS blood test a useful diagnostic tool for breast cancer? The test you are referring to is known as the Anti-Malignin Antibody in Serum or AMAS. This test has been promoted as both a diagnostic and assessment tool for cancer, but has only been approved by the FDA as a tool for detecting recurrence. Because elevation of certain antibodies often correlates with illness, AMAS was developed to determine levels of anti-malignin antibodies as an indication of cancer. The test is accurate in measuring anti-malignin antibodies, with a 95% first time success rate, but in some cases it records transient elevated antibody levels that soon return to normal. Also, the test cannot help determine where in your body you might have cancer, and it could detect cancer at such an early stage that your doctor may not be able to find it. For this reason AMAS, has not been considered helpful in initial cancer detection, yet it can help in determining whether or not cancer is truly in remission.

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I’m uninsured, where can I go for screening and treatment? Until we have universal access to quality health care in this country, finding screening and treatment will continue to be a problem for the growing number of people without health care coverage. But resources do exist. Contact Zoe at info@bcaction.org for information about what services may be available in your area. Currently there are federal and state programs to help low-income women get screened for breast cancer, but there are little to no securely funded programs to help ensure treatment for those who have been diagnosed. To find out about your state’s Breast and Cervical Cancer Early Detection Program, call 888.842.6355. In addition, most chapters of the American Cancer Society have information on local sources of low-cost or free mammography and other financial resources. It’s also worth asking your hospital’s social worker and/or financial counselor to see what options they have available.

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How can I get a second opinion if my insurance won’t pay for it? There are a number of organizations that can help you through insurance pitfalls and other legal matters related to breast cancer. To find out where you can get a second opinion, contact the R.A. Bloch Cancer Foundation at 800-433-0464, or if you live in or near the Bay Area, you can get a free second opinion from a panel of doctors who volunteer their time and expertise at the Regional Cancer Foundation (415-775-9956). If your insurance company is balking at paying for a second opinion or a secondary screening test such ultrasound, you can register a complaint with your state’s medical board. You can also contact any of the organizations below to find out what your rights are and to get legal assistance.

Many of these organizations can also help you deal with legal issues related to access to healthcare, child custody/guardianship, debtor’s rights, employment rights, family & medical leave, housing discrimination, public benefits, and wills & medical directives.

Second Opinions

R.A. Bloch Cancer Foundation
(800) 433-0464
Provides you with a directory of multidisciplinary second opinions for anywhere in the country. Some services are free, others are not.

Legal Services in California

California Women’s Law Center—Breast Cancer Legal Project
(888) 774-5200
Email: cwlc@cwlc.org
A Los Angeles based organization that provides education, advocacy and empowerment to women on legal issues arising from the diagnosis and treatment of breast cancer. They also provide free legal assistance to lower-income women.

San Francisco Bar Association Volunteer Legal Services Program
(415) 989-1616
The Volunteer Legal Services Program provides free legal aid to low-income and disadvantaged people suffering from evictions, family issues and some financial claims, as well as reduced fees for other services.

National Resources

Patient Advocate Foundation
(800) 532-5274
A national organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys.

State Bar Association

Find your state’s bar association

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What assistance programs are available to help pay for medication? As our health care system worsens and drug costs rise, we’re bound to hear this question more and more. In addition to knowing about the growing movements for universal access to care and for affordable medications, you should also be aware that many pharmaceutical companies have programs that provide drugs to physicians whose patients could not otherwise afford them.

Usually your physician must apply to these programs on your behalf, but you can call and obtain the applications and information yourself. Amounts and eligibility will vary greatly from program to program. To find companies’ patient assistance programs (you can search either by drug name or company name), visit www.needymeds.com.

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How can I find a doctor who practices alternative medicine? Finding a practitioner of alternative medicine who fits your style and your needs can be difficult. Below are a number of internet databases that can help you in your search. Here are a few tips to keep in mind:

  • Look for a practitioner who has extensive experience in breast cancer.
  • Ask for a clear description of why the proposed regimen would work, based on biological principles, and why this particular plan is being recommended for you.
  • Determine the range of benefits you might see and how likely you are to enjoy those benefits. Give the information a reality check by comparing it with other available therapies. For example, a greater than 50 percent chance of complete long-term remission in advanced breast cancer is almost unheard of; if it did exist and was documented, it would certainly have been reported in the news and medical journals.
  • Have a frank discussion about side effects, the frequency of these side effects, and possible interactions with other drugs.
  • Find an ND
  • Professional Referral Network
  • American Holistic Health Association
  • Alternative Medicine Home Page
  • FAIM Foundation for the Advancement of Innovative Medicine

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Should I have genetic testing done to find out if I have the “breast cancer gene”? Approximately 5 to 10 percent of women with breast cancer have a hereditary form of the disease. Of these women, 30 to 70 percent have an inherited genetic mutation of the so-called “breast cancer genes” (BRCA1 & BRCA2). Since most breast cancer cases are not linked to these inherited mutations, most women would not benefit from genetic testing. However, if you feel your situation warrants getting tested, you should consult with a trained genetics counselor who can help you evaluate your risk and understand the test.

Those considering being tested are entitled to be fully informed about the implications of the tests before they agree to undergo them. There is currently no known effective method for preventing breast cancer, even in those known to have a genetic mutation that predisposes them to developing the disease. Prophylactic mastectomy does not prevent breast cancer since breast tissue remains even after this drastic surgery. Nor is there any clearly appropriate medical care for people known to have a genetic predisposition to breast cancer.

Women with a BRCA1 mutation associated with an increased risk for breast cancer are more likely to develop the disease at an early age, but regular mammography has not been shown to be effective in reducing breast cancer mortality in women under 50. There are no effective means for truly early detection of breast cancer, and the availability of genetic testing serves only to highlight the need for more research in this area. Consider that, even if you get a positive result, there currently isn’t anything you can do to be more vigilant about breast cancer than what you are already doing.

Other issues that should be carefully considered are the psychological impact to yourself and to your family as well as the possible insurance and job discrimination issues that may arise.

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How do I know if a new “breakthrough” is actually important news? Breast cancer is a hot topic in the news. It seems like there is a never ending stream of cancer “breakthroughs” reported that promise that better treatment, or even the cure, is right around the corner. Beware of this sort of “science by press release.” The fact is that cancer is big business, and in order to keep the money flowing, researchers need to have something to show for it. So, as research centers vie for future funding and industry execs seek to raise their stock prices, we’re seeing an increasing number of these prematurely hyped stories. Here are some tips on what to look for when you read about a new development in breast cancer:

How big was the study? Having a large amount of people in a study helps ensure that the conclusions are not a result of mere chance or other unforeseen variables. There is no single standard on how big a study must be, since it depends on what is being studied, but for the most part, to help ensure that a study is “statistically significant,” bigger is better.

How long did the study last? Long-term follow-up is an important feature to look for in a breast cancer study, particularly when the study involves treatment of primary disease. But long-term follow-up is often not done. As a rule, follow-up should last long enough to see the result you are studying. For instance, a study looking at using radiotherapy to prevent recurrence might involve only one-and-a-half years of follow-up, despite the fact that the peak time for cancer recurrence is two to four years after treatment. Studies of primary “prevention” (to prevent an initial occurrence of breast cancer) need to last a lot longer than studies trying to prevent recurrences.

Who funded the study? Do the people who funded the study have a vested interest in the outcome? A pharmaceutical company is likely to make a big news splash about a new drug even if the drug is shown to have only minimal benefits over current treatment options.

How was the study designed? Studies can be done in numerous ways, and the questions that frame a study definitely affect the answers you get. The “gold standard” for medical research is a prospective, randomized, double-blind, placebo-controlled trial with a sample size large enough to produce at most a 5% chance of the results being due to chance.

And lastly, who benefits, and what does it mean for women living with, and at risk for, breast cancer? Many times a new-fangled treatment is really years and years away from being ready for use by clinicians. While it’s encouraging to know that some progress is being made in laboratories, it is also discouraging for the thousands of women who desperately want a widely publicized treatment that is as of yet unavailable, except maybe to laboratory rats.

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What are aromatase inhibitors? Aromatase inhibitors are a type of hormone therapy for breast cancer patients with estrogen receptor positive breast cancer. Aromatase inhibitors decrease the circulating estrogen in a woman’s body by preventing the aromatase enzyme from converting androgen (androstenedione and testosterone) into estrogen (estrone and estradiol), which is the principal source of estrogen for postmenopausal women. These drugs should only be prescribed to women who are postmenopausal or who have had an oophorectomy.

There are three aromatase inhibitors—Arimidex (anastrozole), Femara (letrazole), and Aromasin (exemestane) that are currently approved by the FDA. These drugs are significantly different from SERMS, or selective estrogen receptor modulators. SERMS, such as Nolvadex (tamoxifen) and Evista (raloxifene), are synthetic hormones that bind to the estrogen receptors in a woman’s breast cells in place of her own estrogen. SERMS “fake out” the estrogen receptors because, unlike natural estrogen, they do not stimulate breast cell growth.

The preliminary results of research comparing the use of tamoxifen alone or tamoxifen plus anastrozole (the ATAC trial) showed a slightly longer disease-free survival for women on anastrozole than for women on tamoxifen, but a longer trial will be needed to enable us to make definitive conclusions. Media hype and pharmaceutical companies’ desires to put new drugs on the market often preempt the thorough study of new drugs before they are released. Thus far, little is known about the long-term effects of aromatase inhibitors. Known side effects of concern include increased risk of bone fractures, elevated cholesterol, musculoskeletal syndrome (aches and pains in soft tissue and joints), and neurocognitive problems (with memory, attention, and word finding).

Like SERMS, aromatase inhibitors are being evaluated as “prevention pills”. Breast Cancer Action has serious concerns about giving otherwise healthy women drugs that can have harmful side effects. The current focus on pills for prevention diverts attention and funding from the true prevention of breast cancer through understanding and eliminating our exposure to toxic chemicals.

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Are breast implants safe? Many women ask us about the possible complications related to breast reconstruction and implants. There are two main types of implants: silicone and saline. Another option not discussed here is the tissue flap where a section of skin, fat and/or muscle is taken from another area of a woman’s body to shape a new breast.

Surprisingly, both silicone and saline implants were unregulated by the FDA for many years. Silicone implants were developed in the early 60’s and first came under the scrutiny of the FDA in 1990. By 1992 the FDA declared a moratorium on their use while they gathered evidence on links between silicone leakage and connective tissue disease. A study published in May of 2001 on the health effects of ruptured silicone gel implants concluded that women who suffered silicone leakage were 2.8 times more likely to report that they had the soft tissue syndrome, fibromyalgia. There are few conclusive studies on the possible link between silicone leakage and other health problems, but some women report disorders such as autoimmune diseases like scleroderma (which causes a gradual hardening of the skin and internal organs), lupus, rheumatoid and other forms of arthritis, as well as chronic fatigue syndrome. Today silicone implants are available only through participation in special studies.

Saline implants were in use for 25 years before the FDA assembled an advisory panel to assess their safety in March of 2000. Despite evidence of numerous risks and complications reported by the advisory panel, the FDA approved saline implants manufactured by two companies, McGhan Medical and the Mentor Corporation. Some of the complications that can occur are infection and contracture of the surrounding tissue, pain, hardening, rashes, and implant rupture. The FDA concluded that 40% of breast cancer patients who have reconstructive surgery were likely to need repeat surgeries within one to three years. They also found that 73—84% of reconstruction patients reported at least one complication during the first three years after receiving saline implants

A number of studies have reported that women with implants are not at increased risk for breast cancer. Implants can obscure breast tissue and make mammograms even more difficult to read. A study conducted by Wendie Berg of the Department of Radiology of the University of Maryland reported that approximately 28% of cancers would not be visible in women with implants.

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What is a prophylactic mastectomy? A prophylactic mastectomy is elective surgery to remove a breast in which no breast cancer has been found. It may describe the removal of both breasts or a contralateral prophylactic mastectomy, which is the removal of a non-cancerous breast in addition to the cancerous one.

The intention is to preemptively reduce the risk of getting breast cancer, though it is impossible to completely eliminate risk because some breast tissue always remains. A study published in the Journal of Clinical Oncology stated that bilateral prophylactic mastectomy reduces the risk of breast cancer in women with BRCA1/2 mutations by approximately 90%.

36 year old actress Christina Applegate recently had a contralateral prophylactic mastectomy, bringing attention to a drastic surgery which doubled in the six years prior. Women who opt for prophylactic mastectomy tend to have had cancer in one breast, have a family history of breast cancer, have tested positive for the BRCA 1 or 2 mutation, or have found precancerous or abnormal cells and have decided that the anxiety of living with uncertainty and high risk of breast cancer outweighs the option of keeping their breasts and possibly having to undergo cancer treatment. Those who do decide to have a prophylactic mastectomy are then faced with other difficult decisions regarding breast reconstruction. Some insurance companies do not cover prophylactic mastectomy.

As with any health decision, the choice to have a prophylactic mastectomy is a deeply personal one. Women weighing this option should have full information about the potential risks and benefits.

Despite sometimes being called a preventive mastectomy, prophylactic mastectomy does not equal true prevention. BCA member Edare Carroll writes in The Source, “No surgery, no magic pill, nothing that we know of currently can guarantee that a person will not get breast cancer. True prevention can only come from discovering what causes breast cancer. We need more viable options than cutting off our breast.”

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