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 Wedding PInk…An Amazing Gift in 2015

When I first began this blog, in 2010, one of the first persons I made contact with was Cheryl Ungar. Cheryl is a breast cancer survivor and the founder of a not for profit organization that, each year, gives away a unique gift …The Wedding Pink,  a wedding package for a couple recently affected by breast cancer.

On Sept. 14, 2013, I featured the 2014 winners of this special gift…Erica and Mike. Their story can be read at http://noboobsaboutit.org/the-wedding-pink-2/erika-and-michael-the-wedding-pink-2014/

 I am pleased to share a photo of  Erica and Mike’s Wedding Pink!

wedding

Please share  Cheryl’s press release with anyone you know who may qualify for the wedding giveaway in 2015.

The Wedding Pink Presented by Cheryl Ungar Gives

Contact: Cheryl Ungar FOR IMMEDIATE RELEASE
Phone: 303-885-1814
Email: cheryl@theweddingpink.com
Web: www.theweddingpink.com

WEDDING GIVEAWAY FOR COUPLE AFFECTED BY BREAST CANCER

Submissions open Aug. 1-10 for The Wedding Pink -2015

 

July 21, 2014 Denver, Colorado

A reminder that submissions are open August 1-10 for the 5th annual Wedding Pink to be held next May at the historic Brown Palace Hotel in downtown Denver.

wedding

This is an opportunity for one deserving couple whose lives have been impacted by breast cancer to be awarded a dream wedding nearly cost free and valued at over $40,000. We encourage anyone who
meets our submission criteria to submit their story.

Everything for the wedding is donated, including the wedding planner, a catered reception, cake, flowers, photographers, DJ, wedding dress and much more. A complete list of contributing vendors,
submission guidelines and the submission form can be found on our website, www.theweddingpink.com

The Wedding Pink is an annual, heartfelt wedding giveaway package presented to a couple whose lives have been recently touched by breast cancer. Cheryl Ungar, the founder of The Wedding Pink, is a 23 year
breast cancer survivor and a professional photographer. She has put together an extraordinary team of some of Colorado’s top wedding vendors –all of whom have generously agreed to donate their services and products to ensure The Wedding Pink is a spectacular event for one very special couple.

Mission statement for Cheryl Ungar Gives: We offer compassion to those affected by breast cancer. This is achieved by wedding giveaways and other acts of kindness to individuals or couples who have
recently experienced a difficult time with this disease in their lives.

Cheryl Ungar Gives operates as a charitable 501(c)3 organization.

# # #

If you would like more information about The Wedding Pink or to schedule an interview with Cheryl Ungar, please call Cheryl at 303-885-1814 or email Cheryl at cheryl@theweddingpink.com.

 

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Visiting Radiation Oncology

radiationSitting in the radiation oncology waiting room, keeping a dear friend company on the first day of treatment, touched off a flood of memories.

First and foremost, it brought back memories of my own radiation treatment, 15 years ago, for my first breast cancer. Second, it took me back to the days I spent in New York City hospital radiation clinics when I was patient navigator.

The radiation oncology waiting area of this major cancer center bears little resemblance to the basement of a community hospital where I waited each day, for six +weeks, to be called in for treatment. It bears even less resemblance to the radiation oncology waiting areas where I met with patients as a navigator. This waiting room has the appearance of a corporate lobby. It is decorated in soft shades of beige and lime green with lots of light wood paneling. Its soft lights, classical music, comfortable chairs, wall hangings and fully equipped coffee bar offers patients a non-clinical, comfortable environment in which to wait. It disarms new patients who are expecting to see a cold, clinical setting. What else might they expect of a treatment area that is located in the basement, or, as this center’s staff refers to the location, the lower level?

The similarities of the radiation experience were unmistakable though.

I recognized the look of fear I used to see on the faces of  new patients. Also evident…the worn look I remember on the faces of those doing radiation following a course of chemo. On the positive side, people on a set time for daily treatment get to know one another. They come in, get something to drink and a snack and start talking with their “radiation buddies.” This comaraderie makes the weeks of radiation treatment a bit easier.

There is a gentler way since I was a radiation patient. Your name isn’t called out over a loud speaker, or by a lady at a reception desk. No, a staff person, part of a patient’s treatment team, comes into the waiting area to escort the patient to treatment. There is more good news; tattooing takes less  time as does the set up on the first day of treatment.

Also new since I was a patient…the Patient Advocate. I hope it is not just this center that has a Patient Advocate. I hope there are advocates in all the cancer centers.

I watch the Patient Advocate as she works the radiation waiting room, introducing herself, putting people at their ease, answering questions and directing patients to the free services within radiation oncology. She speaks to my friend, sharing that she is a survivor. She tells him about social work services and meeting with a nutritionist about what to eat during treatment. She also gives him information on the additional services of the cancer center including a workshop and support group for his specific cancer.

My friend comes out of first treatment session with a look of relief, and shares that the radiation team is friendly and informative.

 

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Making a Difference…Legislating for Breast Cancer Care

 Many of us, after our own experience with breast cancer, want to make it easier for others that come after us. We may participate in fundraising activities that support research, or volunteer to support those going through treatment.

Debbie Wasserman Schultz chooses to make a difference by legislating for change. She represents Florida’s 23rd District in the U.S. Congress. What follows is an article, Knowing BRCA Changed My Life, that she wrote and was released by the Centers for Disease Control on June 10th, 2014.

breast I’m thrilled to have an opportunity to contribute to this new and important initiative from CDC, created after the bill I wrote following my own battle with breast cancer was passed into law as part of the Affordable Care Act.

Part of the goal of the Breast Health Education and Awareness Requires Learning Young Act, or EARLY Act, is to reach young women with important breast health messages through innovative social media venues. The Early Act has one central tenet: that we must empower young women to understand their bodies and speak up for their health.

With National Women’s Health Week culminating just last month, it’s important that we continue the conversation about how cancer affects all of us year-round—particularly young women.

We have made major strides in understanding, diagnosing, and treating breast cancer, but we still have so much more to do. We know that breast cancer strikes women from all backgrounds, races, and ethnicities, but we also know that it can be more of a disproportionate threat to some groups, including Ashkenazi Jews like myself.

The bottom line is that all women need to know the early warning signs of breast cancer, and be aware of their own personal risk factors. We also must keep improving the tools that will help us identify those risks, such as genetic testing—and ensuring appropriate health care coverage to allow wide access to such tools.

Sobering statistics back up this need: one in eight women will get breast cancer in her lifetime. And breast cancer, like any cancer, doesn’t just affect the patient. Cancer in a loved one impacts spouses, parents, extended family and friends and often most of all, our children.

Despite the perception that breast cancer is only something older women need to worry about, young women can and do get breast cancer.

I myself was a young woman at high risk, but didn’t know it. Just months after a clean mammogram, in late 2007, I heard those terrible words, “You have breast cancer.” For as much as I thought I knew as an advocate and legislator in the fight against breast cancer, there was much I didn’t know now that I was a patient. I didn’t know that as an Ashkenazi Jew, I was ten times more likely to have a genetic mutation that drastically increases the likelihood of getting breast or ovarian cancer.

I didn’t know that carriers of the BRCA gene have up to an 85 percent lifetime chance of getting breast cancer and up to a 60 percent chance of getting ovarian cancer.

After my diagnosis and going through a genetic test, I found out that I do indeed have the BRCA2 mutation. Empowered with this knowledge, I made the life-altering decision to undergo seven surgeries—including a double mastectomy and a prophylactic oophorectomy (to remove my ovaries). I knew it gave me the best chance of being there for my children as they grew up.

I was fortunate that I knew enough about my risks and got the help I needed, but I didn’t find my tumor through luck. I found it through knowledge and awareness.

In 2014, it’ll be easier, for women to take charge of their health, thanks to the many benefits of the Affordable Care Act. For example, women now have access to free yearly wellness visits and critical cancer screenings like mammograms. I’m also working on legislative initiatives to ensure that insurance companies provide affordable coverage for genetic testing.

I’m so thrilled to see the EARLY Act at work, and to contribute my own story of “knowing BRCA”! We must give more women the tools they need and the power to stand up, the power to speak up, and the power to survive.

By working together, we can save more of our moms, sisters, grandmothers, and daughters. So please, help us get a head start by talking with the women in your life about breast cancer.

 

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Male Breast Cancer…Treatment…Genetic Counseling

Each year, about 2,000 men in the U.S get breast cancer. The following article, from the Food and Drug Administration, speaks to the similarities and differences between breast cancer in men and women and stresses the special needs men have who are diagnosed with breast cancer.

breast cancer“Because male breast cancer is rare, the Food and Drug Administration (FDA) doesn’t have good clinical trial data on treatments. We tend to treat men the same way we treat women,” says Tatiana M. Prowell, MD, a medical oncologist and breast cancer scientific lead at FDA’s Office of Hematology & Oncology Products.

“Men have historically been excluded from breast cancer trials,” she adds. “We are actively encouraging drug companies to include men in all breast cancer trials unless there is a valid scientific reason not to. The number of men in breast cancer trials will still be small because male breast cancer is a rare condition, but any information to help men facing this disease is better than none.”

Although male breast cancer can strike at any age, the disease is usually diagnosed in men 5 to 10 years older than in women and is found most often among men ages 60 to 70.

Prowell says one reason for the late-age (and later stage) diagnosis may be that men don’t think of themselves as being at risk of breast cancer. “You’d think that because men have smaller breasts they would notice a lump instantly,” Prowell says. “But men don’t expect a breast lump to be cancer, whereas most women who feel a breast lump immediately assume the worst.”

Most men with breast cancer have painless lumps they can feel. The lumps can develop anywhere on the breast but often are underneath the nipple and areola complex—right in the center. Because men don’t have regular mammograms, their breast cancer is usually discovered when they feel sore, such as from a fall or injury.

“Men often attribute breast lumps to some sort of injury. The mass was already there, but they didn’t notice it until it got sore,” Prowell says.

Men and women share some similar risk factors for breast cancer: high levels of estrogen exposure, a family history of the disease and a history of radiation to the chest. Although all men have estrogen in their bodies, obesity, cirrhosis (liver disease) and Klinefelter’s syndrome (a genetic disorder) increase estrogen levels. All are known risk factors for male breast cancer.

If a first-degree relative—their mother, father, brother, sister, children—has breast cancer, men are also at slightly higher risk to develop the disease themselves. Men who have a BRCA mutation (a mutation or change in a gene that predisposes them to breast cancer) are at a greater risk. While their chance of developing breast cancer is still low (only about 5% to 6%), men with a mutation in BRCA2 have a 100-fold greater risk of developing breast cancer than men in the general population.

“In men and women, having a tumor with estrogen and progesterone hormone receptors is more common than not—but that appears to be even more true in men,” Prowell adds.

Treatment options for men are similar to women’s: mastectomy (surgery to remove the breast) or in some cases lumpectomy, radiation, chemotherapy, targeted therapies and hormone therapy.

“Our data on treatments for men are largely based from trials that were conducted in women, or they are retrospective data from a collection of men who were treated over a period of time. We don’t have large randomized trials or high-level evidence for treatment of breast cancer in men as we do for women,” Prowell says.

Hormonal drug treatments include Tamoxifen, a selective estrogen receptor modulator (SERM) that inhibits estrogen receptors, and aromatase inhibitors, which block the production of estrogen from androgens such as testosterone. “For postmenopausal women, we preferentially use aromatase inhibitors as first-line treatment for early stage breast cancer, and regard Tamoxifen as an alternative. It’s the opposite for men because what data we have suggest that aromatase inhibitors don’t work as well in men. So for men, aromatase inhibitors are usually an alternative or second-line treatment, after Tamoxifen,” Prowell says.

For men with larger tumors, positive lymph nodes or cancer that has spread, chemotherapy is often recommended in addition to hormonal treatment, just as it is for women. And men with tumors that are HER2-positive are recommended to receive treatment with trastuzumab, an antibody that targets HER2, just as women are.

All men with breast cancer should be referred for genetic counseling, Prowell advises.

That’s another difference from women, who are not automatically referred to a genetic counselor for genetic testing, such as for mutations in BRCA-1 or 2. These “tumor suppressor genes” allow breast and other types of cancer to develop when they fail to function normally. Only women with a significant family history or certain other characteristics, such as being young or having triple-negative breast cancer (which don’t have estrogen, progesterone or HER2 receptors), are recommended to have genetic testing.

Even among men there are differences. African American men are more likely than white men to have advanced stage tumors at diagnosis and to develop triple-negative cancers. Their types of tumors are more likely to recur and have fewer treatment options.

People should tell their health care provider if any man in their family has had breast cancer. Prowell says. “Even if your grandfather is deceased, if he had breast cancer, that’s important for your health care provider to know. Because male breast cancer is so rare, seeing just one man in a family lineage raises concerns about hereditary breast cancer.”

Source: This article appears on FDA’s Consumer Updates page, which features the latest on all FDA-regulated products. June 27, 2014

Note: To read one man’s account of his breast cancer experience, click on Your Story on the navigation bar above. Scroll down and read about Vincent Moltisanti, a member of the Board of No Boobs About It.

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Needle Biopsy Underused in Breast Cancer Diagnosis

biopsyUntil I read the following press release, I didn’t really appreciate the value of a needle biopsy.

Fifteen years ago, when a mammogram found something suspicious for breast cancer, the first step in the diagnostic process was a fine needle aspiration. Mine hurt and was inconclusive. I was not offered a core needle biopsy. I didn’t know enough to ask. I don’t know if the procedure was even in use in 1999. My surgeon then scheduled a surgical biopsy. My biopsy and surgery were a one step process. I went into surgery not knowing if I had cancer. I awoke to find I had a lumpectomy and that my doctor thought he had made his margins.

My second cancer diagnosis, done at a cancer center, was very different. Immediately following a mammogram, that once again found something suspicious for cancer, this time in my other breast, I was scheduled for a core needle biopsy.

The procedure was minimally uncomfortable and quick. Within hours I knew I had cancer, a second primary. Based on this diagnosis, I was able to prepare mentally and physically for my surgery, a bilateral mastectomy.

MD Anderson News Release 06/09/14

Needle biopsy, the standard of care radiological procedure for diagnosing breast cancer, is underused with too many patients undergoing the more invasive, excisional biopsy to detect their disease, according to research from The University of Texas MD Anderson Cancer Center.

The study, published in the Journal of Clinical Oncology, also finds that patients are often influenced by surgeons to undergo the unnecessary surgery — a decision that’s costly and can negatively impact their diagnosis and treatment.

A needle biopsy is a non-surgical procedure typically performed by a radiologist that uses a thin needle to remove sample tissue from the breast. The procedure was originally endorsed as a reasonable standard of care in 1997 by a Joint Task Force comprising the American College of Surgeons (ACS), College of American Pathologists and American College of Radiologists.

The procedure was endorsed as a quality measure by the ACS in 2006, says Benjamin Smith, MD, associate professor in MD Anderson’s departments of Radiation Oncology and Health Services Research.

“Still too often in my practice, I see patients that come to MD Anderson for care after having an excisional biopsy performed for diagnosis, when they obviously could have had a needle biopsy,” says Smith, the study’s corresponding author. “Often, the excisional biopsy negatively affects other aspects of breast cancer treatment and is simply a wasteful procedure. With this study, we wanted to quantitate the magnitude of that waste on a national scale, and identify some of the impacts of that practice pattern on the well-being of patients.”

For the retrospective study, Smith and his colleagues reviewed Medicare claims of 89,712 patients diagnosed with breast cancer from 2003-2007. All were treated with breast conserving surgery and radiation. The study also identified 11,279 diagnosing surgeons and 12,405 treating surgeons. Of the patients, 68.4 percent (61,353) underwent a needle biopsy, with the rate of those undergoing the procedure increasing from 60.8 percent in 2003 to 76.5 percent in 2007.

Of the total cohort, 68.4 percent of the patients consulted with a surgeon prior to a biopsy and 31.6 percent saw a surgeon after their biopsy. Of the patients who saw a surgeon upfront: 46.3 percent did not have a needle biopsy; 38.4 percent underwent the procedure, but performed by their surgeon; and 15.4 percent had the needle biopsy performed by a radiologist. In contrast, all patients who saw a surgeon post-biopsy underwent the needle biopsy.

The researchers found that surgeon characteristics associated with excisional biopsy included: lack of board certification; training outside the U.S.; medical school graduation before 1980 and low case volume. Also, patient characteristics most associated with surgeon consultation before biopsy, and thus a lower rate of needle biopsy, were: older age; black race; Medicaid coverage; co-morbid illness; earlier year of diagnosis and rural residence.

Geographical discrepancies in the rate of needle biopsies performed were noted — the researchers contrast the low rate of 24.1 percent in Bismarck, North Dakota to a high of 97.2 percent in Lynchburg, Virginia. Yet, Smith notes that access issues were far less of a factor for the decision than that of the surgeon’s influence.

“The real question is the role of the surgeon and to understand that influence. With our study, we set up a statistical model that allowed us to compare the impact of patient-to-surgeon factors.  While there are access issues that should be addressed, it’s clear that the surgeon’s role is very important for the patients’ care,” explains Smith.

Excisional biopsies were negatively associated with multiple breast cancer surgeries, 69.6 percent, compared to 33.7 percent of those who did not undergo the surgery.

For patients, says Smith, it’s important to know that needle biopsy is considered the standard of care for breast cancer diagnosis, it’s relatively readily accessible, and there are possible medical benefits of making the right decision — such as preventing additional surgeries and enduring fewer complications.

“An open surgical biopsy actually makes lymph node biopsy less accurate — and lymph node status is the most important factor when making critical decisions about adjuvant therapy. So breast cancer patients should be fully educated that this is the standard of care and ask for it,” stressed Smith.

“For physicians, I think our findings suggest an opportunity to educate and encourage them to do the right thing in the best interest of their patient,” Smith continued.

In addition to Smith, authors from MD Anderson include: Thomas A. Buchholz, M.D., Executive Vice President and Physician-In-Chief; Sharon H. Giordano, M.D., Ying Xu, M.D., Linda Elting, DRPH, Chan Shen, Ph.D., and Jing Jiang, all with Health Services Research; Grace L. Smith, M.D., Radiation Oncology ; Gary J. Whitman, M.D., Diagnostic Radiology; Yu Shen, Ph.D., Biostatistics; Wei Yang, M.D., Diagnostic Radiology; Kelly K. Hunt, M.D., and Dalliah M. Black, M.D., both with Surgical Oncology. Jan M. Eberth, Arnold School of Public Health, University of South Carolina, is the study’s first author.

The study was supported by grants from the following: Cancer Prevention and Research Institute of Texas; the Cancer Prevention Training Program at MD Anderson; the American Cancer Society; Multidisciplinary Postdoctoral Awards from the Department of Defense; and from the National Cancer Institute, grant numbers CA16672 and  T32CA77050.

 

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