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.

Here Comes Summer…Watch the Sun Exposure!

sunRadiation was a part of my first go round with breast cancer. On my last day of treatment, my radiation oncologist warned against my sitting out in the sun for the first year after completing treatment. Since I am  not a summer person and avoid walking or sitting in direct sunlight, this restriction was no hardship.

Years later, as a patient navigator, I was amazed to hear so many women speak of how they were looking forward covering themselves in sun screen and resting at the beach or near a lake when they completed treatment. So..I thought it might be a good idea to share the reasons why it is best to avoid sun exposure soon after completing treatment for breast cancer.

In the Ask the Experts section of OncoLink.org, Lawrence J. Solin, MD, FACR, Professor of Radiation Oncology at the University of Pennsylvania, responded to a question from a woman who had recently completed radiation for breast cancer saying, Patients who have undergone radiation treatment for breast cancer should be careful about sun exposure in the radiated areas, especially for the first few years after treatment. Areas of skin in the radiated fields will react more easily to sun exposure than areas of non-radiated skin. Patients who have undergone chest wall radiation are even more likely to react to sun exposure.

Significant sun exposure can cause a “recall” of the radiation skin reaction, even after the acute skin reaction has resolved. If a patient is going to be outside and exposed to the sun, then the radiated skin should be covered with clothing or covered with sun block of SPF 15 or higher. Although sun protection is especially important if the patient is currently undergoing a course of radiation treatment, sun protection is also prudent for the first few years.

Dr. Maria Theodoulou responds to a patient about avoiding sun exposure following chemo in Breast Cancer.org saying, ” Many of the chemotherapy agents that we use are also radio-sensitizers, which means they can make the sun’s rays work a lot stronger than they would if one were not exposed to any chemotherapy drugs. Certainly during treatment, we always ask that the patient avoid direct exposure to the sun as much as they can to avoid burning of the skin. If it’s a summer day, it doesn’t mean you have to stay in the house or avoid the outdoors, but a sunscreen with a SPF of 30 or higher, a floppy hat in the summer, or a cover-up if walking on the beach.

The effects of chemotherapy drugs can last for 1 to 2 months after the chemotherapy has been completed. By that time, most of the drug has been used by the body and is out of the system, so it should be safe to go in the sun. Of course, if the patient is going to have radiation after the chemotherapy, the patient should also protect the radiated area as there can be a phenomenon called “radiation recall.” Not only can the affected skin burn, but skin on other parts of the body can become more sensitive as well.

One of the most important things a patient can do is not only protect themselves from the sun’s rays during treatment and at least a month afterwards, but importantly in hot weather, one also has to be careful about becoming dehydrated. It’s important to keep fluid intake optimal, making sure that not only is water being taken in, but also fluids with different salts in them too.”

If you are taking Tamoxifen or Femara or Arimidex, oncologists suggest avoiding sun exposure, wear an SPF 15 or above and protective clothing. Given the side effects of hot flashes and feeling warm all the time that most of us experience when taking these drugs, I can’t imagine wanting to sit in the hot sun while on these medications.

Some of the ways to still enjoy summer is to go out before and after the hottest part of the day; wear a big floppy hat and comfortable protective clothing.

As for me…I get a walk in in the early am and again at sunset and spend the rest of my day in air conditioning.

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When Multiple Family Members are Diagnosed Breast Cancer

My mother was one of six girls; she was the only one to develop breast cancer. She was diagnosed in her early seventies and lived into her mid-eighties.

The six girls had eight girls. Five of the eight girls were diagnosed with breast cancer in their early fifties, including me.

Yet, testing did not identify any genetic defects. Does that mean there is no genetic defect in my family? As it was explained to me…no.

According to the geneticist I met with, at the present time inherited breast cancer disorders account for a small minority of breast cancers overall. Only in about 10% of all breast cancer cases is there actually a genetic defect identified.

Most breast cancers are considered to be from other than genetic causes. In fact, most cases of breast cancer occur in women who do not have a family history of breast cancer. The current theory is that there is a complex interplay between environmental and genetic factors that affects the development of breast cancer, and all the key factors have not yet been identified.

So, what does that mean for all of us who have more than one family member with breast cancer?

breast cancer genetic counselingFirst, consider speaking to a genetic counselor about being tested for known genetic causes of breast cancer. Before you do, learn what you can about genetic testing. An excellent resource for well written, comprehensive information on genetic testing and counseling for breast cancer can be found on the Net Wellness website at http://www.netwellness.org/healthtopics/breastcancer/inheritedbreastcancer.cfm#e

Secondly, be diligent about breast screenings. Until their is a way to prevent breast cancer; until there are treatments that can cure the different types of breast cancer, early intervention is key to having the best possible chance of surviving breast cancer.

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Adult Daughters of BRCA Mutation Carriers

When my friend and colleague was in treatment for a recurrence, the hardest part of treatment was dealing with her sixteen year old daughter’s angry outbursts. My friend carries the BRCA gene mutation. Her daughter’s anger is a by product of knowing that her mother is a carrier. As she put it, “I watch you go through treatment and feel as if I am watching my own coming attractions.”

Here is the results of a study that deals with what my friend’s daughter feels.

What Do Young Adult Daughters of BRCA Mutation Carriers Know About Hereditary Risk and How Much Do They Worry

Principal Investigator: Andrea Farkas Patenaude, PhD, Dana-Farber Cancer Institute

Women with BRCA1 or BRCA2 gene mutations have a 50 percent chance of passing the mutation and its associated high risks for breast and ovarian cancer along to their daughters. Mutations in either of these genes increase the risk of breast cancer by 85 percent (which often occurs at unusually young ages), and ovarian cancer risk by up to 60 percent. The ability of daughters of mothers who are BRCA1 or BRCA2 mutation carriers to make informed health decisions is dependent on them becoming knowledgeable about their risks, genetic testing and options for screening and risk-reducing surgery.

This study uncovers the genetic knowledge, attitudes, health behaviors and life plans of daughters, ages 18-24 years, of mothers who are BRCA mutation carriers. Data from the study define specific health educational, psychological, insurance and medical needs of this population.

Written questionnaires and telephone interviews revealed that the young women in this study lacked knowledge about hereditary breast or ovarian cancer genetics, such as BRCA, when compared with women who had undergone genetic counseling. Further, the young women exhibited a limited understanding of screening and risk-reduction options and of the recommended age for initiating screening. Worry about hereditary breast or ovarian cancer was high among daughters, with about a third scoring above cut-offs on the Impact of Event Scale, which measured their distress related to knowledge of hereditary cancer. In addition, 40 percent of the young women reported that they worried a great deal or to an extreme about hereditary cancer (BRCA).

“Young, high-risk women have little knowledge about the probabilities and options for managing the cancers for which their risks are remarkably increased. Further, many report intense anxiety related to their potential cancer development,” said Dr. Andrea Farkas Patenaude of the Dana Farber Cancer Institute. “This data supports the need and can provide the foundation for the development of targeted educational materials to reduce that anxiety and ultimately improve participation in effective screening and risk-reducing interventions that can improve survival and quality of life for these young women.”

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Your Path Report…A Blueprint for Treatment

Whatever you may know about your cancer prior to surgery, until the pathology report is in and your doctor reviews it with you, you do not know all there is to know about your breast cancer or what treatment you may need.

Tissue removed during your surgery will be sent out for a comprehensive examination by a pathologist(s).  Results of these tests will been sent to your doctor over several days to a few weeks. As each report comes in, your doctor will add it to the results of tests he or she already has in your file from any other tests done prior to your surgery.

Once all the reports are in, your doctor, be it the surgeon or medical oncologist to whom you’ve been referred, can meet with you and discuss the results of your pathology report and share what he or she believes is the appropriate treatment for you.This treatment plan is based on what is called Staging.

Your cancer is staged by information gathered from various lab tests performed on the specimens  submitted to the pathologist. A user friendly description of Staging can be found at www.breastcancer.org/symptoms/diagnosis/staging.jsp

A pathology report can be quite complex and needs to be explained thoroughly. You have the right to know what each section of the report is about. As your stage is explained to you, take time to absorb what you are being told and what it means for your treatment.

Feel free to ask questions and don’t stop asking until you understand what is being said to you. Bring someone with you to this very important discussion. Give that person a list of your questions and have them ask what you might forget to ask.

Don’t settle on a medical oncologist. Find one you like and feel you can trust. This is the person who will manage your chemotherapy, if it is needed, and monitor you if you are put on a hormone therapy, which you will take for a period of five years. This is a long time to spend with someone that doesn’t give you a comfort level.

If radiation is your treatment, then find a radiology center where you feel you can be comfortable. If necessary, visit a few before making a decision.

 

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MBCN Announces Their 2015 Metastatic Breast Cancer Research Leadership Awards

metastatic

I want to share a press release from the Metastatic Breast Cancer Network (MBCN), an all-volunteer, patient-led organization, that has long advocated for more focused metastatic breast cancer research that improves outcomes in the clinic for patients with metastatic breast cancer, an incurable disease that ends the lives of 108 people every day of the year.

April 10, 2015 – NEW YORK — The Metastatic Breast Cancer Network (MBCN) announced the 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards: Dr. Andrew Ewald, associate professor in the Departments of Cell Biology and Oncology at the Johns Hopkins University School of Medicine and Dr. Matthew Ellis, the director of the Lester and Sue Smith Breast Center at Baylor College of Medicine.

“In 2014, MBCN made a commitment that all memorial contributions made to MBCN would go to funding metastatic research,” said Shirley Mertz, President. “We are pleased to present leadership awards of $50,000 each to two individuals whose work contributes significantly to understanding basic knowledge about the process of metastasis and to improving how patients are treated.”

 Mertz, living with metastatic breast cancer since 2003, noted that although metastatic breast cancer is responsible for virtually every breast cancer death, it receives only a tiny percentage of the billions dedicated to breast cancer research.

“MBCN is a founding member of The Metastatic Breast Cancer Alliance,” Mertz said.“The Alliance’s Metastatic Breast Cancer Landscape Analysis released in October 2014 found that metastatic focused research made up only 7% of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally. We know research holds the key to changing those statistics—we are proud to support the work of Drs. Ewald and Ellis.”

Improving Knowledge About Metastasis: Dr. Andrew Ewald, Assistant Professor in the Departments of Cell Biology and Oncology at the Johns Hopkins University School of Medicine

Dr. Ewald is an interdisciplinary cell and cancer biologist. His laboratory, made up of basic science and medical trainees working in collaboration with engineers and clinicians, pioneered the development and use of 3D culture techniques to capture and analyze in real-time the growth and invasion of breast cancer tumor cells.

This work is providing deeper insights into the biology of metastasis. Dr. Ewald’s work is complex, and yet he is able to explain his work in a way that patients can understand, as this video demonstrates (https://www.youtube.com/watch?v=gezIo3p2dl8).https://mbcnbuzz.files.wordpress.com/2015/04/andrewewald.jpg&h=203

“Breast cancer patients of all stages are shocked to learn that after 30 years of breast cancer research, scientists cannot fully explain how and why breast cancer cells leave the breast and travel to distant organs, particularly many years after successful treatment for early stage disease,” said Mertz. “Unfortunately, this happens to about 30% percent of early-stage patients—and we don’t know why. How can we optimally treat the disease if we do not understand the processes that caused it’s spread?”

Dr. Ewald believes research that seeks to understand and describe how cancer cells learn to make connections to other nearby cells, travel through local tissues and the blood stream, and then establish themselves as a new tumor in the bone, lung, liver or brain will lead to new strategies and treatments to control or eliminate cancer cells from accomplishing these steps to metastatic spread and ultimately improve outcomes for individuals with metastatic breast cancer.“We applaud Dr. Ewald on his important and challenging work in cell and cancer biology,”Mertz said. “MBCN and its members will continue to follow future developments in his research.”

Improving Treatments For Metastatic Patients: Dr. Matthew Ellis, Director of the Lester and Sue Smith Breast Center at Baylor College of Medicine

Dr. Matthew Ellis is both an oncologist and scientist who has championed the cause of metastatic breast cancer patients for well over a decade. Currently, Dr. Ellis is the director of the Lester and Sue Smith Breast Center at Baylor College of Medicine. He was recruited from Washington University School of Medicine in St. Louis where from 2010 to 2014 he was a professor of medicine and head of the section of breast oncology. He had also served as a faculty member there since 2003.

While at Washington University Dr. Ellis gathered a large resource of patient derived xenografts (tumors taken directly from the patient and studied in animals) and these became excellent resources for testing new therapies and understanding treatment resistance.

His work to develop these models focused on estrogen receptor positive breast cancer and these patient derived xenografts will now complement similar efforts underway by Baylor Smith Breast Center researchers with estrogen receptor negative breast cancer.

Dr. Ellis, a pioneer in breast cancer genomics, has been instrumental in developing a Genome Atlas and Therapeutic Road Map for estrogen receptor positive breast cancer. Most recently he has found that metastatic breast tumors initially positive for the estrogen receptor frequently harbor mutations and translocations in the receptor that render the tumor resistant to endocrine therapies used to block estrogen. Several laboratories are now trying to develop new drugs that will block these mutant receptors.

“MBCN acknowledges Dr. Ellis’s leadership in identifying groundbreaking new information about mutations in breast cancer and their clinical relevance. His work in this area has the potential to bring precision medicine to metastatic breast cancer patients and, hopefully, with it, longer survival. (Hear Dr. Ellis discuss his work here (https://www.youtube.com/watch?v=aCCPhAHbgpI).)https://mbcnbuzz.files.wordpress.com/2015/04/mellis.jpg&h=203

“The Metastatic Breast Cancer Network acknowledges and thanks the individuals, organizations and private companies whose donations to MBCN on behalf of or in memory of loved ones and friends with metastatic breast cancer made these research leadership awards possible,” Mertz said. “We are confident the awards will advance the work of Dr. Ewald and Dr. Ellis.”

 Source: The  METASTATIC BREAST CANCER NETWORK

The Metastatic Breast Cancer Network, a national, not-for-profit organization, was  founded in 2004 to raise awareness about the kind of breast cancer that is rarely discussed in the breast cancer support groups or the media—metastatic breast cancer. Unlike early stage breast cancer, in which cancer cells are confined to the breast, in metastatic breast cancer, cancer cells have traveled from the breast to other sites in the body. Patients with metastatic disease are in constant treatment and must deal with the harsh reality that their disease is chronic, progressive and ultimately fatal. Led by patient advocates, MBCN has worked to offer education and information to patients and their caregivers through its website (mbcn.org (http://www.mbcn.org ) ); targeted brochures developed for the public and those newly diagnosed; and an annual conference for metastatic patients at major comprehensive cancer centers.

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