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.

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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A New Treatment Option for Young Women with Hormone-sensitive Breast Cancer

 

breast cancer

The National Cancer Institute published the following press release recently containing important information for young women with hormone-sensitive breast cancer.

NCI Press Release: A drug used for treating breast cancer, known as exemestane, is more effective than a common breast cancer prevention drug, tamoxifen, in preventing breast cancer recurrence in young women who also receive post-surgical treatment to suppress ovarian function.  The findings from this trial were in women who had a form of early breast cancer that was sensitive to hormonal treatment.

The study was conducted by the International Breast Cancer Study Group (IBSCG), in partnership with the Breast International Group (BIG) and the North American Breast Cancer Group, and funded by the U.S. National Cancer Institute (NCI), IBSCG, and the pharmaceutical companies Pfizer and Ipsen.  The combined results of the TEXT (Tamoxifen and Exemestane Trial) and SOFT (Suppression of Ovarian Function Trial) were presented at the 2014 American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago and published online in the New England Journal of Medicine.

Treatment with exemestane plus ovarian function suppression reduced the risk of any invasive cancer by 28 percent, and reduced the risk of invasive breast cancer recurrence by 34 percent, compared to treatment with tamoxifen plus ovarian function suppression. At five years from study entry, 92.8 percent of women remained free from breast cancer after treatment with exemestane plus ovarian function suppression; 88.8 percent were breast cancer-free after receiving tamoxifen plus ovarian function suppression.

Treatment with an aromatase inhibitor, such as exemestane, has previously been demonstrated to benefit postmenopausal breast cancer patients compared to treatment with tamoxifen.  Aromatase inhibitors prevent the formation of estradiol, a female hormone, by interfering with an aromatase enzyme. Both trials were conducted to determine whether this benefit could be extended to premenopausal women by combining exemestane with ovarian function suppression.  Hormone-sensitive breast cancer, defined as estrogen and/or progesterone receptor-positive breast cancer, represents 79 percent of breast cancers diagnosed in women under age 50 in the United States.

The TEXT and SOFT trials were phase III, randomized clinical trials that enrolled 2,672 and 3,066 premenopausal women with hormone receptor-positive early breast cancer, respectively, between November 2003 and April 2011. Over 500 medical institutions from 27 countries enrolled women in the trials. In the two trials, 4,690 women were randomly assigned to 5 years of adjuvant, or post-surgical, treatment with exemestane plus ovarian function suppression or assigned to tamoxifen plus ovarian function suppression. SOFT included a third treatment assignment, tamoxifen alone, which will be analyzed in late 2014. The women may also have received chemotherapy as part of adjuvant treatment.

The two trials were designed to be complementary. They were conducted over the same time period, in the same general population, and have the two treatments in common. Combining them brought the results to doctors and patients sooner than if they were presented separately.

Ovarian function suppression has been used for decades as a breast cancer treatment for premenopausal women, though whether it adds benefit when combined with other treatments was still uncertain. In these trials ovarian function suppression was combined with either tamoxifen or exemestane. In premenopausal women use of an aromatase inhibitor such as exemestane requires suppression of estrogen produced by the ovaries. In TEXT and SOFT, ovarian function suppression was achieved by use of monthly injections of the GnRH agonist triptorelin, surgical removal of both ovaries, or radiation therapy to the ovaries.

“These results provide a new treatment option for young women with hormone-sensitive breast cancer. The trials demonstrate that an aromatase inhibitor, previously recommended only for postmenopausal women, is also effective for premenopausal women when combined with ovarian function suppression,” said study co-chair Olivia Pagani, M.D., Breast Unit Clinical Director at the Oncology Institute of Southern Switzerland in Bellinzona, Switzerland. “As a physician who routinely recommends ovarian function suppression as adjuvant therapy for some young patients, these results will change my practice. I will combine ovarian function suppression with an aromatase inhibitor rather than with tamoxifen.”

Support from NCI enabled American and Canadian participation in the TEXT and SOFT trials through the North American Breast Cancer Group (NABCG). NABCG contributed one-third of all patient enrollments in the TEXT and SOFT trials, whereas two-thirds enrolled from cooperative oncology groups affiliated with the Breast International Group (BIG) network. Led by Alliance (formerly CALGB), North American involvement accelerated trial recruitment, permitting earlier reporting of findings and faster access to these practice-changing results.

In addition to assessing the effectiveness of the treatments at reducing recurrence, patient-reported quality of life assessments were collected throughout the five years as well as physician-reported side effects. “As clinicians we should be reassured that, in the two treatments studied, the patient-reported quality of life results were similar overall, as was the frequency of severe side effects,” said study co-chair Barbara Walley, M.D., Medical Oncologist at the Tom Baker Cancer Centre in Calgary, Canada and executive member of the Breast Disease Site Committee, National Cancer Institute of Canada-Clinical Trials Group. “The side effects reported in this premenopausal population are similar to those in postmenopausal women in which tamoxifen and aromatase inhibitors are widely prescribed.”  Follow-up of the young women participating in the trials continues to assess long-term prognosis, tolerability, and side effects.

“These results underscore the importance of international research collaboration in improving patient outcomes in North America and beyond, such as for the young women in this study,” said Richard Gelber, Ph.D., professor, Harvard Medical School and director, IBCSG Statistical Center, Dana-Farber Cancer Institute, Boston. “This partnership between NCI and IBCSG represents a successful model for future clinical research advances.”

More About NCI

NCI leads the National Cancer Program and the NIH effort to dramatically reduce the prevalence of cancer and improve the lives of cancer patients and their families, through research into prevention and cancer biology, the development of new interventions, and the training and mentoring of new researchers. For more information about cancer, please visit the NCI Web site at http://www.cancer.gov or call NCI’s Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).

NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov.

The International Breast Cancer Study Group (IBCSG) is a Swiss nonprofit cooperative breast cancer research organization that has conducted clinical research in adjuvant endocrine therapy and chemotherapy, timing and duration of adjuvant therapies, and quality of life for over 35 years.

 

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