No Boobs About It, Inc., www.noboobsaboutit.org is a not for profit organization sharing information , resources and support on getting through treatment and on with life.

The Soy Story

soy

A few months after completing treatment for my first primary breast cancer 15 years ago, I joined a 10-week breast cancer support group at Memorial Sloan-Kettering. One of the first questions asked by a fellow participant was, “What is the soy story?”

I had no idea what she was talking about.

One of the two oncology social workers running the group explained that since soy had estrogen-like properties; women who had estrogen-fed tumors were advised not to eat soy products.

In the years I worked as a navigator, I often had the opportunity to ask doctors, at the various cancer centers, their opinion about women, who have had breast cancer, eating soy. Answers ran the gamut with some doctors saying to eat soy in moderation, to those who stressed total avoidance of all soy products.

What follows is a press release by HealthDay News on a study published September 4th in the Journal of the National Cancer Institute.

THURSDAY, Sept. 4, 2014 (HealthDay News) – Soy protein may increase activity in genes linked to breast cancer growth — at least in certain women who already have the disease, a new study suggests.

Experts said the findings, reported in the Sept. 4 Journal of the National Cancer Institute, shouldn’t scare women off from eating tofu.

But to be safe, the researchers suggest women with breast cancer eat soy foods only in moderation and avoid supplements.

And for women who don’t have breast cancer? “This study doesn’t tell us anything about whether soy raises the risk of developing breast cancer,” said researcher Dr. Jacqueline Bromberg, a breast cancer specialist at Memorial Sloan Kettering Cancer Center in New York City.

The relationship between soy and breast cancer is complicated. On one hand, in countries where soy is a dietary staple — like Japan — women who eat more of it tend to have a lower breast cancer risk.

On the other hand, soy contains phytoestrogens — plant compounds that have weak estrogen-like properties. And lab research has found that those soy compounds may promote the growth of breast tumors.

In the new study, Bromberg and her colleagues randomly assigned 140 women with newly diagnosed, early-stage breast cancer to one of two groups. In one, women took a soy protein supplement every day for anywhere from one to four weeks; those in the other group were given milk powder as a comparison. The women were premenopausal or just past menopause.

The soy supplement — a powder added to water or juice — was the equivalent of about four cups of soy milk a day, Bromberg said. Women in the study typically used it for two weeks.

Even in that short time, the study found, about 20 percent of the women using soy developed high blood concentrations of genistein, a soy phytoestrogen. Among those women, some showed heightened activity in certain genes that promote breast tumor growth and spread.

But it isn’t clear just what that could mean, Bromberg stressed. “Does that necessarily mean the tumor is growing more rapidly?” she said. “No.”

Bromberg said there was no evidence of “tumor proliferation” in women with revved-up gene activity, but the study may have been too short to detect such an effect.

“All we can say is that two weeks of soy supplementation was enough to increase expression of genes related to tumor proliferation,” Bromberg said.

But to be safe, she said, women with breast cancer should probably not take soy supplements, and should eat soy foods, such as tofu and tempeh, only in moderation.

A breast cancer researcher who wasn’t involved in the study agreed that women should play it safe and avoid soy supplements, particularly within a few years of going through menopause.

But a remaining question is whether using soy later in life could be beneficial when it comes to breast cancer, according to Craig Jordan, scientific director of the Lombardi Comprehensive Cancer Center at Georgetown University in Washington, D.C.

With estrogen replacement, there is evidence from lab research and human studies that “timing is everything,” said Jordan, who wrote an editorial published with the study.

As an example, he pointed to a large U.S. study called the Women’s Health Initiative, which looked at the effects of hormone replacement therapy. In that study, women given estrogen alone (not with progesterone) had a lower risk of developing breast cancer than women given a placebo.

And the women in that study were typically in their 60s.

Based on other research, it seems that estrogen can fuel either the growth or death of breast cancer cells, depending on when it’s given. During and soon after menopause, estrogen — and possibly soy phytoestrogens — may put fuel on the fire, Jordan said.

“But soy might be good when used farther out from menopause,” he said. “If we designed a clinical trial of women in their 60s, we might find more [breast cancer] cell death than survival.”

That trial, however, has yet to be done.

SOURCES: Jacqueline Bromberg, M.D., Ph.D., physician/scientist, Memorial Sloan Kettering Cancer Center, New York City; V. Craig Jordan, Ph.D., D.Sc., scientific director, Lombardi Comprehensive Cancer Center, Georgetown University, Washington, D.C.; Sept. 4, 2014 Journal of the National Cancer Institute

HealthDay

 

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An Alternative to Breast Needle Localization

The most uncomfortable and anxiety producing part of my lumpectomy, for my first breast cancer, occurred hours before my surgery. The breast needle localization, as it is called, is a common practice procedure in which the radiologist inserted a needle with a fine wire into my breast to map the location of the cancer. The wire remained in my breast, poking out of the skin, to guide the surgeon during my surgery.

breastI was pleased to read about a patient friendlier method of pinpointing breast tumors that are visible in a mammogram but not palpable in physical examination. This  procedure proved itself in clinical trials and is being used  in several major cancer treatment centers around the U.S.

The procedure, called radioactive seed localization, begins with a breast radiologist injecting tiny sealed radioactive sources called “seeds” into the patient’s breast to mark the exact location of the cancer. The radiologist can perform this image-guided procedure up to two weeks before a biopsy or lumpectomy.

Once in the operating room, surgeons use a handheld radiation detection device, developed specifically for this procedure, to zero in on the seed and precisely navigate to the location of the cancer, which is removed along with the seed during the operation. After the procedure, there is no radioactivity remaining in the body. A pathologist ultimately takes the seed out of the breast tissue in the laboratory, and radiation safety officers ensure the seed’s safe disposal.

Studies suggest that radioactive seed localization results in more precise removal of small breast cancers as compared to traditional breast needle localization. It also reduces the need to have a second surgery due to incomplete removal of the abnormal tissue.

A  video by Dr. Monica Morrow, Chief of the Breast Surgical Service at Memorial Sloan-Kettering, NYC explains how the procedure is done at Sloan. She speaks to the benefits of this procedure over breast needle localization. “Seed localization has improved our patients’ experience by allowing them to go directly to the operating room on the day of their lumpectomy. It is more convenient because it avoids the need for a wire in the breast for several hours, which many patients find uncomfortable.”

The use of this technique at Memorial Sloan-Kettering was initiated by Chief of the Breast Imaging Service, Elizabeth Morris and Jean St. Germain, an attending physicist and radiation safety officer at Memorial Sloan-Kettering. It is standard practice for the majority of Memorial Sloan-Kettering’s patients with small breast cancers.

“Getting this technique up and running took months of training and coordination among experts in radiology, surgery, medical physics, and pathology to make certain that the procedure would be safe and effective for our patients,” St. Germain said, “This collaboration has ultimately improved our efficiency as well as provided a better surgical experience for our patients.”

Sources: Press releases, Video by Dr.Monica Morrow, Chief of the Breast Surgical Service at Memorial Sloan-Kettering

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Beat the Victim

VICTIMIsn’t it bad enough that a woman gets breast cancer without others beating the victim by deciding that somehow she must have brought it on herself?

In a recent breast cancer awareness presentation at a post secondary school, a student in her late 30′s, shared that she had attended a funeral the previous Saturday for a cousin  who died of breast cancer. She said, “I can’t help but wonder if my cousin could not have done more to prevent getting breast cancer.” It seems her cousin was 45 years old. Her cousin was a physically fit woman who exercised regularly, watched her diet, and didn’t drink or smoke.

I asked what she thought her cousin could have done that she was not already doing when diagnosed. Another student  spoke up, suggesting that it must have been in her family. Another student  said,”Your cousin must have been doing something  you weren’t aware of for her to get breast cancer.”

Why beat the victim?

It  was obvious that these students were trying to find reasons why this woman got breast cancer in order reassure themselves that it was something she did, not a random event that could happen to anyone. These students needed to believe that they could control whether or not they got breast cancer. What was sad was that they needed to beat the victim by making her responsible for her own fate.

My response made some of the students visibly uncomfortable. That was not my intent. I shared that while research tells us we may be able to reduce our risk of getting breast cancer by practicing a healthy lifestyle; a healthy life style  is not a get out of jail free card when it comes to breast cancer. There are other factors, through no fault of our own, that make us vulnerable to breast cancer. Most students had never heard of the BRCA mutations.

No woman wants to believe that she can get breast cancer. But every woman needs to believe that if she or a friend or family member gets breast cancer there is no room for beating the victim. It serves no purpose, not for the woman with breast cancer, or for those around her who are trying to distance themselves from the possibility of it happening to them.

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Survivorship…Permission …New Beginnings

permission

As another cancer anniversary comes around, I find I am taking inventory of what I have given myself permission to do since my first primary cancer and my second primary cancer 10 years later.

First and foremost, I’ve learned that going back to life as it was before breast cancer was not an option. Finding a new beginning was critical to my getting on with my life as a survivor. Permission was and continues to be the key to each new beginning I have chosen since my first cancer, almost 16 years ago.

I owe my survival, not once, but twice, to mammograms that found my breast cancers before they could be felt in comprehensive breast exams, before they required chemo, and before they spread beyond my breasts.

In 1999, my annual mammography showed something suspicious. My path report confirmed a Stage 1, estrogen-positive, early cancer. In addition to the lumpectomy, I had 36 radiation treatments and took Tamoxifen daily for five years to prevent a recurrence.

The hardest part of my first breast cancer was managing my fears and not allowing them to rob me of getting on with my life. I joined a support group. I came to realize that besides the love of friends and family, the only commodity that matters to me is time; not money, not recognition, or how I look, just time and how I use it. I began building on this awareness to identify how I wanted to spend my time both personally and professionally. I began to give my self permission to do the things I had been putting off.

Initially, I gave myself permission to leave my full-time position as director of a nonprofit health care organization. I was terrified to give up the security of full time employment and health insurance and take a chance on myself. I took a part-time position as a grant writer, which gave me the time and the income to try my hand at something I always wanted to do- write for publication. With every rejection notice, I had, once again, to give myself permission to stick with my new beginning. My first published article led to many more.

A few years after my treatment ended, I gave myself permission to have a relationship. It was hard. Getting past my self-consciousness about changes in my body image from surgery, radiation and weight gain from hormonal therapy was very difficult. Eleven years later, we are still together. His support continues to make my new beginnings easier.

When another new beginning was presented to me, I gave myself permission to get out from behind my computer, and the safety of a writing business, to get back into direct service once again. My four years as a navigator for the American Cancer Society put me in direct touch with thousands of persons seeking treatment for cancer  in NYC’s public hospitals. What I learned about the needs of most women and a few men who presented with breast cancer became the basis for what NBAI now offers …a neighborhood approach to breast cancer awareness in NYC.  By bringing awareness about breast cancer risks to senior centers, post-secondary schools, and community organizations NBAI hopes to reduce the numbers of persons waiting to seek care until their cancers are advanced, their treatment needs extensive, and their prognosis poor.

The longer I was breast cancer free, the better I thought my chances were that my breast cancer experience was behind me forever. Then, in September of 2009, ten years after the cancer in my right breast, another routine mammography discovered a lump in my left.

The cancer in my left breast was a Stage 1, early cancer. I didn’t have a recurrence; I had a brand new cancer, unrelated to my first.

I wanted my breasts off. I didn’t want another lumpectomy, radiation and annual mammograms that had to be followed up with needle aspirations and surgical biopsies to check out something suspicious.

So I did it. In 2009 I got a double mastectomy. Breast cancer was easier the second time around.

As a result of second cancer, I started, No Boobs About It, (NBAI) that began as a blog site. Today, it is a nonprofit organization that focuses on raising awareness of breast cancer in the communities of New York City. The weekly blog continues to bring information on research, new treatments and practical suggestions for  getting through treatment and  successfully transitioning from active treatment to survivorship. Theses days the NBAI website averages over 30,000 +visits per month from persons in 37 countries.

It is hard to believe it has been almost 16 years since my first breast cancer and five years since my second. Breast cancer’s lesson was and continues to be about permission to do life my way.

 

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A Screening Program Success Story

screeningWhen navigating in NYC hospitals, I met many women who were uninsured or under-insured and did not meet Medicaid eligibility requirements. They needed breast and cervical screenings, but could not afford the out of pocket costs associated with these screenings.

It was always a relief to be able to refer them to a program that could give them the screenings they needed -The National Breast and Cervical Cancer Early Detection Program. This CDC initiative, which funds state and local providers to provide breast and cervical screenings, has brought these screenings to the neighborhoods and maked them accessible to women in need. I am pleased to share this news release, issued by the CDC, that speaks to the success of this screening program.

 U.S. Centers for Disease Control and Prevention, news release, Aug. 6, 2014: Millions of underserved women in the US have benefited from CDC’s breast and cervical screening program,The National Breast and Cervical Cancer Early Detection Program.

More than 4.3 million women with limited access to health care received breast and cervical cancer screening and diagnostic services in the first 20 years of the CDC’s National Breast and Cervical Cancer Early Detection Program (NBCCEDP).

From 1991 to 2011, 56,662 breast cancer, 3,206 cervical cancers, and 152,470 precancerous cervical lesions were detected. More than 90 percent of these women received appropriate and timely follow-up care, according to the CDC report published online and appears in the Aug. 15, 2014, supplement edition of Cancer.

“Today, millions of women have benefited from the timely screening and diagnostic services offered by CDC’s National Breast and Cervical Cancer Early Detection Program,” said Ursula E. Bauer, Ph.D., M.P.H., director, CDC’s National Center for Chronic Disease Prevention and Health Promotion. “This program has made tremendous contributions in public health through strengthening partnerships, health care collaborations, and quality of care, but also at a personal level by serving women directly.”

The Cancer supplement, titled National Breast and Cervical Cancer Early Detection Program: Two Decades of Service to Underserved Women, contains 13 new papers evaluating multiple aspects of the NBCCEDP and shows consistent value in the program, including beyond its original purpose of detecting cancers in underserved women.

The papers describe the number of actual cancers detected, outreach, education, and health care collaboration activities.  Data quality, evaluation, cost estimates, and suggestions for future programming are also noted. This is the first time detailed information has been published describing the program’s screening activities– and strategies beyond screening– used to reach underserved populations.  Also included are state examples of successful interventions.

Among the findings:

  • Public education and outreach help raise awareness and address barriers to care.
  • One of the uses for data reported to CDC is quality assurance, which monitors the quality of services provided by the NBCCEDP-funded programs. This monitoring can help identify issues with the services, determine the causes of the issues, and check whether these issues were corrected.
  • The estimated cost of providing cancer screening and diagnostic services through the NBCCEDP was $145 per woman. Cost estimates can be useful in future program planning.
  • Performance management and program effectiveness strategized improved service delivery through use of data, strong quality indicators, and investment in the program to ensure women are receiving timely screening, diagnostic follow up, and referral to treatment when needed.
  • Partnerships at national and local levels with national organizations and their members, community-based organizations, government agencies, tribes, healthcare systems, and professional organizations have played a critical role in achieving NBCCEDP goals.
  • The NBCCEDP has made tremendous contributions to breast and cervical cancer screening for Alaska Native/American Indian women and strengthened local tribal screening capacity.

The papers show how the NBCCEDP can support health care systems, especially as access to health care improves for millions of people through the Affordable Care Act. These partnerships can support the use of appropriate and high-quality breast and cervical cancer screening through broader use of organized approaches to screening and increase population-level screening.

The NBCCEDP was established by Congress in 1990 to provide quality breast and cervical cancer screening and diagnostic services to low-income, uninsured women. Over 24 years, the program has established strong capacity with the clinical care system to become the only nationwide cancer screening program serving all 50 states, the District of Columbia, five U.S. territories, and 11 tribes or tribal organizations.

For the online articles, go to http://onlinelibrary.wiley.com/doi/10.1002/cncr.v120.S16/issuetoc. To find out more about the NBCCEDP, visit http://www.cdc.gov/cancer/nbccedp/.

 

 

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