Breast cancer is the most common cancer among women, with about 1 million new cases annually worldwide and more than 400,000 deaths a year.

According to the American Cancer Society Facts and Figures for 2011-2012, estimates for 2011 were  230,480 new cases of invasive breast cancer diagnosed in women, as well as an estimated 57,650 additional cases of in situ breast cancer and  approximately 39,520 women were expected to die from breast cancer. It was also estimated that approximately 450 men would die from breast cancer.

Yet, it wasn’t so long ago that breast cancer was only spoken of in whispers in the U.S. and in some places in the world this is still the case.

It is even harder to believe that this was ever the case when every October our world turns pink and everyone from NFL players to chefs participate in raising awareness about breast cancer while raising funds for research and treatment of this disease that touches so many and those who love them.

I remember the days before awareness when breast cancer was a closet disease; when breast cancer meant a radical mastectomy and women suffered in silence.

We owe a lot to the courageous women who went public about their disease and the issues surrounding available treatment, the lack of funding for breast cancer research and the lack of community-based support services for those affected by breast cancer. In going public these women forced the medical community to find other more effective means of screening to detect breast cancer at its earliest possible stage; to develop less debilitating surgeries, and to be able to offer women the option of successful reconstruction following a mastectomy.

One such woman, Rose Rehert Kushner, a writer and breast cancer survivor, wrote Breast Cancer: A Personal History and an Investigative Report a an account of her own illness and an analysis e of the then current approaches to treating breast cancer. That was 1975.  Parts of her book appeared in newspapers and women’s magazines, and remained in circulation until the early 1990s.

Ms. Kushner advocated for women to be a part of the treatment team, to take charge of their care and not just accept what was said about and done to their bodies.

One of Ms. Kushner’s major contributions was to question the standard medical procedure of performing a one-step biopsy and mastectomy. Women had to give consent to this procedure before anesthesia, knowing that they could wake up to find a confirmed diagnosis of cancer and their breast gone…all at once.

Ms. Kushner found a well-qualified physician who agreed to a two-step process for her that separated biopsy results from surgical treatment. Her subsequent research supported her argument that a two-step process would benefit women psychologically while not harming their prognosis.

Ms. Kushner single-handedly lobbied the cancer establishment to change the customary treatment, which had been based on tradition rather than evidence.  Thanks to her, we now have the two-step biopsy and treatment decision. Thank you Rose!

So, why come out of the closet about your breast cancer? Because disease-related advocacy is most successful when people who have survived the disease educate others about what needs to be done to improve treatment methods and survivor rates.

If we, who have survived breast cancer or are living with metastatic disease, don’t advocate how can we expect anyone else to?

You don’t have to march on Washington, although that is not a bad idea, there are other ways to come out of the closet. You can offer to speak at women’s groups, or volunteer on a breast cancer hot line or participate in a community fundraiser or just be there for a family member, friend or neighbor who has just been diagnosed.

Coming out of the closet about breast cancer gives you the opportunity to use your experience to help others.

Sometimes we embrace myths about breast cancer rather than deal with the realities of the disease. Unfortunately myths can paralyze us and put us in danger.

Here are the Myths and the Facts About Breast Cancer:

1. Breast Cancer Doesn’t Run in My Family

Eighty to eighty-five percent of women with breast cancer have no family history of the disease. Even if no one in your family has ever been diagnosed, don’t use this excuse  for ignoring your yearly mammogram.

2. I’m Too Young for Breast Cancer.

Breast cancer can affect women of any age. While the disease is more common in post-menopausal women,  25 percent of women with breast cancer are younger than 50.

3. Breast Cancer Is a Death Sentence

When caught early, up to 98 percent of women survive at least five years. Breast cancer that has metastasized, or spread to other parts of the body, poses the greatest concern, but women with metastatic breast cancer often live for years with metastatic disease.

4.I Have Five Years Survival, So My Breast Cancer Won’t Return.

Breast cancer can recur at any time, but it is more likely to happen within the first five to 10 years.

5. Chemo Makes You Vomit All the Time

Chemotherapy does cause nausea and vomiting. But in the last 10 years, new drugs have become available  and very few people have persistent nausea and vomiting from chemotherapy.

6. All Breast Lumps Are Cancerous

Most breast lumps are not cancer. They could be cysts or a benign condition called fibrocystic changes or fibroadenoma. All lumps should be checked thoroughly by a doctor.

7. Herbal Remedies and Dietary Supplements Can Help Treat Breast Cancer.

No herbal remedy, dietary supplement or alternative therapy has been scientifically proven to treat breast cancer. Doctors do not know how these alternative medicines may interact with traditional therapies.

8. My Breast Lump is Painful, So it Must not be Cancer

Not true; there’s no correlation between whether the lump is painful and whether it’s cancerous. Any lump needs to be checked by a doctor.

9. If Cancer is Exposed to Air During Surgery, It Will Spread.

Surgery will not cause the cancer to spread. The only thing that will promote cancer’s spread is a delay in diagnosis and failure to treat the cancer.

10. Radiation Therapy is Dangerous and Will Burn my Heart, Ribs and Lungs.

Radiation used today is safe and minimizes exposure to the heart, ribs and lungs.

Although they are not perfect, mammograms are the best method to find breast changes that cannot be felt.

Mammograms are known to  pick up 80-90% of cancers.  This leaves 10-20% of cancers that will not be seen. The detection rate drops dramatically in women with dense breasts to only 40-50% of cancers picked up on a mammogram.  This is not a good detection rate by any means.

Mammograms have limits that include:

• Mammograms may not help a woman with a fast growing cancer that has already spread to other parts of her body before being found.

• False negatives can happen, although they don’t happen often. Younger women are more likely to have a false negative mammogram than are older women.

• The dense breasts of younger women make breast cancers harder to find in mammograms.
  

• False positives can happen and are more common in younger women.

As a younger woman, between 40 and 50 years old, what can you do to get the most accurate screening?

First, find out your breast density.

If you have dense breasts, you need to be especially vigilant to make sure that if you do have breast cancer, you increase the odds of it being found early.

Ask your doctor to send you for a screening breast ultrasound when you have your annual mammogram.

Be sure to go to a facility that has digital mammograms.

Source: Women’sHealth.gov

According to the findings of a new study done by researchers at the University of North Carolina less than half the breast cancer survivors surveyed in the study were ever asked about their personal preference for surgery prior to beginning treatment.

Their surgeons did not explain to them that they had surgical options. They could have either a full mastectomy or breast-conserving lumpectomy.

“We found that breast cancer survivors had fairly major gaps in their knowledge about their surgical options, including  the implications for recurrence and survival,” said study lead author Dr. Clara Lee, an associate professor of surgery and director of surgical research at the University of North Carolina School of Medicine in Chapel Hill.

Dr. Lee and her colleagues sent surveys to 746 women who had undergone surgery for stage one or stage two breast cancer at one of four medical centers: the Dana-Farber Cancer Institute and the Massachusetts General Hospital in Boston; the University of California, San Francisco; and the University of North Carolina, Chapel Hill.

Of  the 440 respondents, less than half (about 46 percent) knew that local recurrence risk is higher after breast-conserving surgery (lumpectomy) than after mastectomy, and only about 56 percent of women knew that survival rates are equivalent for both surgical options.

Other information that came to light in the study revealed that women who said they preferred mastectomy were less likely to have treatment that was in accordance with their goals. Lee said this was probably because patients reported that their doctors were more likely to discuss breast conservation therapy and its advantages than mastectomy.

Many women did not remember being asked for their preference  between the surgical options available to them.

The fact that less than half (48.6 percent) of the patients recalled being asked their preference was particularly concerning to Lee.”It would be one thing if we were talking about decisions for which there is clearly a superior treatment, such as treatment for an inflamed gallbladder,” Lee said. “In this case, it’s reasonable and actually better for the surgeon to make a recommendation. But here we’re talking about a decision where there is no medically right answer, and it really depends on the patient’s preference. In that situation, it makes sense to ask the patient what she prefers.”

Another breast cancer surgeon cautioned that the retrospective nature of the study (asking women to recall past events) “Clearly there are deficits in knowledge, but what we don’t know for sure is if that’s because the surgeon failed to convey this information, or the surgeon failed to convey it in a way that the patient could understand, or the patient has simply forgotten,” said Dr. Leslie Montgomery, chief of breast surgery at Montefiore Medical Center in New York City.

“If anything, I’m actually surprised that the numbers were as good as they were,” Montgomery added. “There’s often a big difference between what a woman is told and what she actually absorbs at a time when she is so emotionally distressed.”

“As surgeons, we really need to make sure we convey the proper information to a woman at what is probably one of the most stressful times in her life,” Montgomery said.

SOURCE: January 2012, Journal of the American College of Surgeons

Bay Area Young Survivors (BAYS) is an organization run entirely by volunteers.

BAYS mission… to support young women in the San Fransisco Bay Area who are living with breast cancer.

BAYS is a grassroots organization with a tiny budget and no staff, just dedicated volunteers making it happen.

BAYS began in 2004 when two of the co-founders couldn’t find a support group in the Bay Area to address the specific issues faced by young women.

BAYS is open to all survivors – from the newly diagnosed, to those battling recurrent or metastatic disease, to long-term survivors. BAYS is a diverse and compassionate group of women, diagnosed with breast cancer before the age of 45.

Many of the women who are part of BAYS were misdiagnosed, told they were “too young” to have cancer. Many of them found their own cancer because they were too young for routine mammograms.

Through monthly support group meetings, an online network, and community-building events, BAYS members share information, experiences, and resources. BAYS goal is to break the isolation of living with breast cancer by providing a community built on compassion, understanding, hope, and inspiration.

In BAYS support group and online community, BAYS members share some issues that are common to all people with cancer and others that are unique to young women with breast cancer.

Since BAYS founding, member volunteers have continued to try to offer things not found anywhere else, such as free childcare during support group meetings (so that young moms can attend) and  “happy hours” with a trained sexologist to discuss how cancer treatment affects sexuality.

For more information, visit…http://www.baysnet.org/