“Hit it hard and hit it fast.”

Last week, we introduced you to LBBC’s newest blogger, Laura Renegar, who was diagnosed with triple-negative breast cancer in 2011.  When we left off, Laura had asked her surgeon if the results he had just delivered did indeed mean she had TNBC.  Trying to be as compassionate as possible he stated, “Yes darlin’, it does.”   

Always the southern gentlemen even as I was being told I have been diagnosed with triple-negative breast cancer.  Here I was, thrown back down to the lowest point of the roller coaster ride yet. By this point, I had done enough research to know that I should be frightened. The research that I had seen showed the statistics and the prognosis of TNBC are not as positive as some other types of breast cancer, that there is not any targeted therapy for TNBC and that is usually very aggressive. Now I understood why my surgeon wanted my tumor out a few weeks prior. I understood why he didn’t want to waste another week waiting for the insurance company to decide the fate of my diagnosis while debating coverage for a blood test.  All things became clear. I had to become my own advocate and I had to seek every bit of information I could find and I had to do my research.  I didn’t know anyone that had triple-negative breast cancer, in fact, I had barely heard of it.

I had a port placed in my chest a few days later and in a few weeks, I began chemotherapy. Three days before chemotherapy I met my first survivor friend who had TNBC. She was coming up on her five year mark and I was impressed. She looked good and she was healthy. I became focused on just getting through chemotherapy because my oncologist said we were going to “hit it hard and hit it fast”, and we did.

I put my BRCA test results out of my mind and I gave 100% attention to staying well through chemotherapy. A month after my last chemotherapy treatment was my 48^th birthday and it was time for me to make my decision for further treatment. Because of the fact that my cancer was triple-negative and the fact that I have the BRCA2 gene mutation, my decisions seemed pretty clearly defined. My oncologist seemed to think so, my surgeon seemed to think so, but yet, I had to make the final decision, and live with that decision, whichever path I chose.

I didn’t have to have a bilateral mastectomy. I didn’t have to have my ovaries removed. But if I didn’t have those surgeries, would that encourage a recurrence?  I clearly remember lying in my bed on my birthday and thinking “in order to have more birthdays, I have to do everything in my power to protect myself”.  I remember weighing my options. Even though my cancer was not in my lymph nodes, and I had chemotherapy, the fact that I was BRCA2 positive remained. My chance of a recurrence was extremely high; and the prognosis of recurrent triple negative breast cancer is poor. I had to do everything I could to secure my future and my life. I began researching bilateral mastectomies and what it meant to have my ovaries removed and what it would be like to be put in medical menopause at 47 years old. This option did not seem to be an easy path, but it did seem like the safest treatment path, to secure a future for myself.

The bilateral surgery, along with the oophorectomy (Ed. Note: the surgical removal of an ovary), was a hard surgery for me.  It was hard physically and emotionally, and my roller coaster ride continued through reconstruction while learning to live with menopausal symptoms and my new body.

March 1, 2013 was the date of my two-year survivor anniversary. I look back now and am so proud of the path I took and the decisions I made to ensure my health. I did everything I could possibly do to beat my triple-negative breast cancer diagnosis and reduce the chances of a recurrence.

Would I do the same thing over again? Yes I would!

My story is still unfolding but I live each day the best way I can. I volunteer a lot for the American Cancer Society, I continue to update my blog, I write stories and articles when I am asked to, and I tell my story when I am invited to speak about it. Mainly, I try to encourage women to be their own advocate, to get their annual mammograms, to have their yearly physical, and to do self exams. I encourage them to know their breasts and to know their health history.

I will continue to try and shine a light on TNBC until a targeted therapy is found. I now know 19 women with triple-negative breast cancer. Two years ago I was not fortunate enough to know, and love, these women but I consider this one of the many blessings of this diagnosis. If you are diagnosed with TNBC, please reach out to people in your community and to find other TNBC survivors. How? Ask your doctors to introduce you to some of them.  See if there is a local support group for TNBC.  You can also call the Triple Negative Breast Cancer Foundation and contact the American Cancer Society and ask for a TNBC volunteer with Reach to Recovery.

I also encourage you to seek out the many services available at LBBC for women with TNBC including their Guide to Understanding Triple Negative Breast Cancer, expanded sections of content on their award winning website and their upcoming free webinar featuring Dr. Eric P. Winer.

Take advantage of these resources and find other women – because they may need to have you in their life just as you will want them to be in yours.

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blog, too!

“Yes darlin’, – it does.”

                                       

If we followed format, this is where we’d introduce you to LBBC’s newest blogger, Laura Renegar, with a few polite lines that could never  do justice to this amazingly talented and funny lady.  We’re still laughing over this offering of honesty:

When I had expanders in my chest they kind of formed a shelf below my collar bone. When I was sick and in bed and would eat propped up, I would CONSTANTLY have toast crumbs or Oreo crumbs on that “shelf” on my chest. Once I found a whole chocolate chip sitting there and once I found a piece of turkey. There are funny moments during expansion and reconstruction. 

Here is the first of a planned series of blogs where Laura will share her experiences as a woman diagnosed with triple-negative breast cancer.

On March 1, 2011, I received the call that every woman dreads. I was at work, sitting at my desk, holding my cell phone that showed the name of my OB/GYN calling. My mind debated about not answering the phone, but quickly considered the possibility that this phone call could be good news. When I answered that call, my life, and the life of my family and friends would be forever changed. “You have breast cancer” my doctor said, “I am sorry.” We talked for a few minutes as I sat numbly at my desk writing the name and number of the surgeon he suggested on a small piece of scrap paper.

A few days later my husband and I met my surgeon and his nurse. Right in the beginning of the appointment the doctor said “can I joke with you?” Are you kidding me? This was my kind of doctor! Not only did I want him to be able to joke with me, I needed him to be able to joke with me. No matter how serious breast cancer can be, I needed my medical team to be brutally honest, caring, and compassionate yet able to lighten some of the moments with a joke or some laughter.

My surgeon recommended genetic testing and I agreed to see a genetic counselor for my BRCA test. I had the blood test and genetic counseling and the waiting began. One week became two weeks. My insurance company was negotiating with the genetic testing company about my coverage for this $3,400 blood test. Two weeks! My surgeon scheduled my lumpectomy and sentinel node biopsy because he couldn’t allow my cancer to continue to grow and spread while waiting for the insurance company to make a decision. At this point I began to realize that my cancer was most likely aggressive. I was told that my cancer would be staged, and further diagnosed, when the tumor was removed during the lumpectomy. I felt lost and left somewhat in the dark. Every day seemed as if we were hurrying up for a test or an appointment and then we were waiting. I felt like we were always waiting for a call, an answer, or a test result. I felt immediate relief the night of the lumpectomy and sentinel node biopsy surgery, knowing that my cancer had been removed. I was very happy to have the surgery behind me, but little did I know that my real roller coaster ride was just beginning.

Two days after my surgery I got a phone call from the genetics counselor. Once again, a phone call that I was hoping was going to deliver good news – but I heard hard news instead. The phone call began with “I am sorry to tell you this, two days after your surgery, but your BRCA test came back positive yesterday.” What? The BRCA2 gene mutation put a whole different spin on my diagnosis. Now I felt as if I was at the bottom of the roller coaster loop and I began researching. My odds of getting breast cancer were obviously 100% (since I already had it) and the test showed my odds of getting ovarian cancer were over 50%. But what does this test say, and prove, about my chance of recurrence? I was recuperating from the surgery yet my mind and heart were nagged by this BRCA test result and worrying already about a recurrence. Five more days passed and we still had not gotten news on my pathology report from my lumpectomy. No news is good news right? Eight days after my lumpectomy, I was at work, and my phone rang; it was my surgeon’s nurse. No news was good news! My lymph nodes were negative for cancer and he was able to get clear margins. I am ecstatic, we are all celebrating and dancing around, and now I feel like I am on one of the upper tracks of my roller coaster ride.

Clear margins AND clean lymph nodes? How blessed am I? I am on the top of the world!

The next day I receive another phone call, this time it is with the result of my her2 neu test. I was still riding high on the lack of cancerous activity in my lymph nodes and the fact that he was able to get clear margins. My surgeon stated that my her2 neu test came back negative. I got very quiet and said to my surgeon, “this means I am triple negative, doesn’t it?”

He paused on the other end of the phone and said “Yes darlin’, – it does.”

On April 17, LBBC and the Triple Negative Breast Cancer Foundation will host a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine. During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

In addition, you can order a free copy of LBBC’s Guide to Understanding Triple-Negative Breast Cancer,  that offers helpful information, whether you have just been diagnosed or you are moving forward after treatment.

Be sure to check out Laura’s blog, too!

Alysa Cummings: Yearly Check-Up

Alysa Cummings, Group Facilitator for LBBC’s writing workshop series Writing the Journey, shares a seasonal excerpt from her recently published cancer memoir, Greetings from CancerLand,  in February’s second submission to Living Beyond Breast Cancer‘s Writer’s Corner.

Yearly Check-Up

Excerpt from Greetings from CancerLand: Writing the Journey to Recovery

Fourteen years later and not much has changed. Not much. Not really.

Starting with the oncologist’s grand entrance.

He knocks twice, opens the door and hurriedly strides into the examining room. His energy speaks volumes (Places to go; patients to see. so many patients; so little time). I am sitting there, a veteran oncology patient, already changed, sitting on the edge of the examining table, a salmon-colored cotton robe wrapped around me.

Welcome to my yearly check-up.

As always, we begin by shaking hands. That’s our ritual. Then it’s my turn to smile and recite my opening line: so how’s my favorite oncologist?

Your only oncologist, to the best of my knowledge, Dr. C replies. There he goes – correcting me, reminding me of our running gag about his need for precision, his attention to detail. In CancerLand, Dr. C is a living legend with hundreds of patients’ medical records stored right in his head.  He won’t take any notes during the exam and somehow never forgets a date, dosage or chronic complaint. Maybe that’s why I’ll never complain about any quirky personality traits of his. An oncologist who’s a bit obsessive is a good thing, don’t you think?

Any lumps, bumps or bruises? Dr. C asks, moving briskly into Act One: The Physical Exam. I lie flat on my back. He modestly opens the gown, uncovering one side at a time, keeping the opposite side hidden, and presses the tips of his fingers in a circular pattern. Then he says the word I’ve been patiently waiting for (perfect) as he finishes with the left side and moves around the table to begin his exam of the right. Twelve years of exams later and like an addict hungry for a fix, I inhale the word (perfect), and savor how good it feels (I’m okay, I’m okay).

But honestly, is this ironic, or what? After all, there might be a short list of politically (and clinically) correct terms that could be used to describe my post-treatment upper body (altered? revised? reconstructed?) But perfect? Hardly.

Does this doctor who deals with so many breast cancer survivors know the impact of his word choice? Or is “perfect” the word this particular oncologist has decided to use with his patients to indicate that there’s no sign of disease? All I know is that perfect is a lovely word, and I can’t wait to hear him say it.

The exam comes to a predictable conclusion with light banter about our personal lives and those acquaintances we have in common, and that’s when I suddenly think of a word that I have to add to our yearly check-up script.

So, tell me, Alysa, Dr. C asks, moving towards the door, ready to conclude the exam. Overall, how was your year?

I’m ready with the perfect answer.

Unremarkable, I say, my year was unremarkable. And I see the doctor cock his head with interest. I have never used this term in our conversations before. Over the years, he has, of course. To describe my CAT scans, bloodwork and Breast MRI results. To report that everything is normal, that there is nothing out of the ordinary.

An unremarkable year, I repeat. No surgeries. I’m hoping that next year turns out to be another unremarkable year. Unremarkable totally works for me.

It certainly does.  And now that I’ve said it out loud, I need to step up to that challenge and day by day make it real until I’m in this examining room again, twelve months from today.

A disease-free reality; in my mind that’s the most remarkable thing I can imagine.

Living Beyond Breast Cancer will host another Writing the Journey Series this Spring, hosted by Alysa Cummings. And the good news is that there will be two different Writing the Journey groups in Spring 2013 – one in Cherry Hill, NJ and one in Haverford, PA.  Check back to the LBBC Blog for more insights from Alysa and future Writing the Journey creations.  You can purchase your own copy of Greetings from Cancerland, on Amazon.com!

LBBC to host 7th annual conference for women living with metastatic breast cancer

 

Living Beyond Breast Cancer (LBBC) has opened registration for its 7th annual conference for women living with metastatic breast cancer.  The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 13 – Sunday April 14, 2013 at the Loews Philadelphia Hotel.

Breast cancer is considered metastatic when it spreads from the breast to another part of the body such as the lungs, bones, liver or brain.  There are approximately 152,000 women in the United States currently living with metastatic breast cancer and estimates indicate that advances in treatment and care will push that number to 164,000 by the year 2015.1

Previous conferences have attracted attendees from across the country by featuring leading national health care and wellness experts who present specialized plenary sessions and over a dozen workshops designed to address the complex medical, social and emotional situations many women experience when diagnosed with metastatic breast cancer. As in past years, workshops for family members and caregivers will also be offered.

Conference attendees will have the opportunity to ask questions about current research and clinical trials, treatment options and quality-of-life concerns. Additionally, attendees are given the chance to meet, connect and network with hundreds of women facing similar challenges expanding their peer support network. Travel grants and fee waivers, provided by Susan G. Komen for the Cure, are available for those who qualify.

LBBC’s highly specialized programming for women living with stage IV breast cancer stems from the nonprofit’s 2006 release of Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources. In this extensive report, LBBC consultants Musa Mayer, MS, MFA, and Susan E. Grober, PhD, reported their findings from a survey of 618 women living with stage IV disease. The survey focused in great detail on their use of and preferences for services in three domains: information, support and resources. The data revealed insights on the information, support and practical needs of women living with metastatic breast cancer so LBBC could address the gaps in tailored resources for this population.

To do this, LBBC created not only their annual conference but a variety of other resources.  Since the report’s release, a special subsection of lbbc.org just for women with metastatic disease has been significantly expanded, free webinars and regional community meetings feature topics of appeal specifically to the metastatic breast cancer community and the LBBC Guides to Understanding Breast Cancer: Metastatic Series includes specialty titles: Treatment Options for Today and Tomorrow, Managing Stress and Anxiety, Symptoms and Treatment Side Effects, Understanding Palliative Care and LBBC’s newest publication, Guide for the Newly Diagnosed.

Visit lbbc.org to register online and download an event brochure. To register by phone or for additional information, call (610) 645-4567.

The conference would not be possible without the support of the event’s presenting travel grant and fee waiver sponsor Susan G Komen for the Cure®. Other event supporters include Title Sponsor Genentech. 

¹ Data on File. 1006812. AstraZeneca Pharmaceuticals LP. Wilmington, DE.

 

LBBC is currently seeking women living with metastatic breast cancer or their caregivers who would be interested in sharing their stories. Leading up the conference, we’ll feature these first-person accounts here on the LBBC blog and promote them via lbbc.org, Facebook and Twitter.  If you would like to tell others your story, or have any questions, please contact LBBC’s Kevin Gianotto via email at kevin@lbbc.org.

 

Rachel Pinkstone-Marx: Book Review and CONTEST GIVEAWAY!

Love the recipes from Annette Ramke, CHHC, cancer survivor and co-author of the book, Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer? Now it’s time share our OWN! Read this review and leave YOUR favorite recipe in the comments section of this post. Annette will pick a winner to receive a FREE copy of  Kicking Cancer in the Kitchen! (Be sure to leave your name & email)

Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer

Annette Ramke & Kendall Scott

(Review by your faithful blog steward, Rachel!)

When you flip open the cover of Kicking Cancer in the Kitchen you learn that this book is “THE resource for the woman who has been handed the cancer card—and for the one who never wants to get it.” However, as a reader and a writer, I think that it’s categorized even better in their dedication. This book is for:

All those who have faced a major life challenge and kept moving forward with determination, because they just have way to much living left to do.

As I have now had the pleasure to read this thoughtful cookbook and speak with both of the authors, I surely connect every word of this book to that purpose.  Authors Annette Ramke and Kendall Scott are both cancer survivors, so they come equipped with the needs and perspective of women who have been diagnosed with breast cancer. In this sassy and insightful book of recipes and stories, they share real-life knowledge and experience about the healing power of food, along with a look into their journeys with breast cancer. These pages are filled with more than 100 recipes for living a healthy life while living with cancer and easing the symptoms of treatment. This should be considered a favorable resource for women, before, during and after treatment. It also doesn’t hurt to give it a read if you haven’t been diagnosed with cancer, but would like an in depth look at a healthy and disease-preventative diet.

Annette Ramke was 36 when she was first diagnosed with cancer, and while in treatment, became immersed in studying nutrition as a way to fight cancer. She felt better than she ever had, including before getting cancer, and decided to pursue further studies at the Institute for Integrative Nutrition in New York City, which is where she met Kendall. She is now a certified holistic health coach and works with those facing cancer and other diseases. She lives in Philadelphia, PA.

Kendall Scott was diagnosed with cancer at age 27. She then went from a meat & potatoes/ take-out pizza diet to leafy green veggies and whole grains in baby steps, and felt the improvement even while undergoing chemotherapy. After going into remission, she attended the Institute for Integrative Nutrition (IIN) in New York City. She is board certified in holistic health coaching through IIN and the American Association of Drugless Practitioners. Kendall teaches nutrition and cooking classes, leads webinars, presents at wellness events and writes online articles as a nutrition expert. She lives in Maine.

As you break the book down after your first read, you note that you can enjoy two large and very different sections of the book:  a “girlfriend’s guide,” where you learn about Annette and Kendall’s “ups and downs” with diagnosis and treatment, and then a thorough second half filled with recipes. The intentions of the book are to help and comfort woman dealing with the struggles and dietary mazes that come along with treatment, but–don’t get me wrong–Kicking Cancer in the Kitchen is a resource that  would definitely appeal to the health/diet-conscious person, whether they have cancer or not.

Focusing on the “cookbook” portion, the recipes range from being as easy as throwing a few ingredients into a blender for a “Gorgeous Green” or “Superfood” smoothie, to moderate difficulty for your “Seitan Strogonoff.” However, nothing seems out of a Beginner Chef’s reach.  Also, there is a handy section at the top of each recipe that starts you out with bullet points of  the recipe’s “healthy helpers” such as being  “detoxifying,” “immune boosting,” and of course, “constipation kicking!” Our authors also then provide a quick, yet informative introduction of the recipes healthy hints. Right in the center of the book is most likely where you will get lost, as you peruse the beautiful photographs of a selection of the finished products as you choose what meal to make yourself.

This uplifting cookbook/memoir will not let you down, as it is written like a guide coming directly from the heart: girlfriend-style. I’m sure you’ll find it hard to pick out just ONE recipe as your favorite!

Kicking Cancer in the Kitchen has received some amazing press, and it’s only right to let all of you hear what some of these acclaimed authors have to say:

“…a beautiful, delicious, and effective way to improve your health at any time—whether or not you have cancer or any disease. In fact, I recommend that all follow this sort of diet for optimal health!”— Christiane Northrup, M.D., author of the New York Times bestsellers: Women’s Bodies, Women’s Wisdom and The Wisdom of Menopause

“An essential guide to using food as medicine and creating an inhospitable environment for cancer, while delighting your palette and invigorating your senses. Getting well has never been more fun or tasty!” —Mark Hyman, MD, author of the #1 New York Times Bestseller, The Blood Sugar Solution

“Kicking Cancer in the Kitchen offers, in one engaging and comprehensive package, what others don’t – first-hand experience, nutritional know-how, girlfriend-style support and tasty recipes – all designed to help kick cancer or keep you healthy. A healthy diet is an integral part of healing and fighting disease, and Annette and Kendall join you, step-by-step, and empower you to discover how easy and delicious eating well can be – starting with your very next meal! —Dr. Steven G. Eisenberg, Co-founder of California Cancer Associates for Research and Excellence and author of Dancing With The Doctor (2013)

Now it’s your turn! Leave your best recipe in the comments section of THIS book review post (along with your name and contact email address) and Annette will choose a winner!

Annette Ramke, CHHC, is a certified health coach and breast cancer survivor. She took an integrative approach to treatment and focused on a whole food, plant-based diet. She coauthored (with Kendall Scott, CHHC), Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, released October 2. Learn more atTheKickingKitchen.com.

Self-Care is Self-Love

We here at Living Beyond Breast Cancer feel it is important that no matter what stage you might be in–newly diagnoses, in-treatment, remission or recovery–health and nutrition are paramount.  Here today at the LBBC blog, we are thrilled to welcome back Annette Ramke,  certified health coach, cancer survivor and co-author of the book, Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, as she comes back for her monthly installment providing our readers with her perspective on nourishing the body and soul.

So often we go through life running from one thing to the next. We are busy with work and family responsibilities, putting the needs of partners, children, friends and bosses above our own.

We believe we don’t have the time to take care of ourselves, whether it is moving our bodies with exercise, preparing and eating healthy food, finding moments of balance and stillness in our days or even taking a deep breath and appreciating our bodies for all they do for us day after day, month after month, year after year.

For many of us, a cancer diagnosis is a wakeup call in a number of ways. We have said ourselves, and have heard many of our cancer pals say, “I knew I was burning the candle at both ends. I knew I was stressed and wasn’t taking care of myself,” when speaking of the time prior to getting hit with the Big C news. Suddenly a diagnosis puts everything into glaring perspective. Now it’s not just about having low energy, flabby abs or edgy nerves. It’s about surviving, and the stakes are high.

And while we know that always eating poorly, never exercising or continuously functioning under stress doesn’t cause cancer directly, these elements do significantly affect our health and well-being. They do support or hurt the immune system. They do influence hormone levels. They do contribute to energy, strength and metabolism. They do impinge on our emotions and mental clarity. And they do affect the body’s ability to prevent and heal from disease and cope with conventional medical treatments.

Why not give your body, heart and mind some support, especially if you’re facing cancer?

If you are serious about getting healthy, then right now is the best time to get serious with self-care. You will feel renewed, refreshed, happier and stronger just from taking some time to give your body, mind and soul what it craves. No matter where you are in health and cancer, it’s time to show that amazing body some love!

Here are some of my self-care faves. What are yours?

Sipping hot tea

Reiki

Reading in my hammock

Massage

Meditation

Cooking wearing a fun apron

Green smoothies

Juicing

Yoga

Savoring a little dark chocolate

Singing in the car

Walking, hiking, bicycling – moving

Sunshine and fresh air

Taking a bubble bath

NEWS: The LBBC Blog will offer a review of Annette and Kendall’s Book, Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, as well as a contest to win a your very own copy!

NEXT MONTH: Leave your best recipe in the comments section of the February post reviewing the cookbook, and Annette will choose a winner!

Annette Ramke, CHHC, is a certified health coach and breast cancer survivor. She took an integrative approach to treatment and focused on a whole food, plant-based diet. She coauthored (with Kendall Scott, CHHC), Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, released October 2. Learn more atTheKickingKitchen.com.

Living Beyond Breast Cancer and Metastatic Breast Cancer Network Release New Publication

For Immediate Release:

GUIDE FOR THE NEWLY DIAGNOSED JOINS GROWING RESOURCE LIBRARY FOR WOMEN WITH STAGE IV DISEASE

January 8, 2013; Philadelphia, PA | Living Beyond Breast Cancer (LBBC) and the Metastatic Breast Cancer Network (MBCN) have announced the release of a free publication to help address the needs women have in the first months following a diagnosis of metastatic (stage IV) breast cancer. The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is the newest title in LBBC’s growing library of Guides to Understanding Breast Cancer, free publications designed specifically to empower women with the information needed to make the best and most informed decisions for themselves and their families when facing a breast cancer diagnosis and considering options for treatment and disease management.

As someone living with metastatic breast cancer, Shirley Mertz knows firsthand of the physical and emotional impact of a stage IV diagnosis. Mertz, the president of MBCN, reflected on her personal experience and commented, “Most new metastatic breast cancer patients feel overwhelmed with anxiety and a loss of control over their lives. This new publication will remind women that knowledge is power, help them find courage to educate themselves about metastatic breast cancer and hopefully open the door to better treatment selection and outcomes.”

The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is designed to help women navigate the first few days, weeks and months after a first-time, stage IV breast cancer diagnosis or metastatic recurrence. The guide focuses on medical, emotional and practical concerns with the goal of helping readers to understand the biology of metastatic disease, form questions they may need or want to ask and provide available resources that improve emotional and physical wellness.

“Living Beyond Breast Cancer and the Metastatic Breast Cancer Network worked together to create this resource to help women become their best advocates,” said Jean A. Sachs, MSS, MLSP, LBBC’s chief executive officer. “This guide will help women understand the tests and treatments they may undergo and address the impact that metastatic breast cancer can have on emotional well-being.”

Nearly 150,000 people—women and men—are living with metastatic breast cancer in the United States and while a diagnosis of this type is life-changing, advances in research and treatment have made it possible for many to live longer, more fulfilling lives. LBBC and MBCN worked diligently to ensure that this guide was available to help bridge the gap between initial diagnosis and life beyond.

“I wish something like this had been available to me when I was first diagnosed, for my benefit and the benefit of family and friends who had—and still have—so many questions,” says Cindy Colangelo, a member of the consumer advisory committee that reviewed the guide’s content for accuracy. “Hopefully, this guide will help people acknowledge the elephant in the room that no one wants to discuss. Our goal is to provide a greater understanding of metastatic breast cancer and help affected women and families move forward by answering questions, providing information and giving hope.”

In addition to Colangelo and other women living with metastatic breast cancer, the guide was also reviewed by LBBC and MBCN staff, health care professionals, medical and surgical oncologists, social workers, nurses, researchers, and a palliative care specialist, led by William Gradishar, MD, of the Feinberg School of Medicine at Northwestern University.

“As a group facilitator, I’m excited to present this guide to patients who seek wisdom, guidance and support,” says Marie Lavigne, LCSW, OSW-CAs, an oncology social worker and a member of the medical review team. “As with all of LBBC and MBCN’s offerings, it provides a cornerstone to the essential needs of women diagnosed with metastatic breast cancer – clear, honest information, hope and inspiration when they need it the most.”

The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is divided into six sections written in clear and easy-to-understand language. Individual copies of the guide are free and can be ordered online at lbbc.org or by calling (610) 645-4567. Larger quantities may also be ordered for a small shipping and handling fee. Additional resources can be found through LBBC’s Understanding Guides: Metastatic Breast Cancer Series and through MBCN. LBBC’s titles are: Treatment Options for Today and Tomorrow, Managing Stress and Anxiety, Symptoms and Treatment Side Effects and Understanding Palliative Care. MBCN’s titles are: Diagnosis: Metastatic Breast Cancer…What does it mean for you? and Get the Facts.

About Living Beyond Breast Cancer
For over 20 years, Living Beyond Breast Cancer has been providing educational resources and support services to women of all ages who have been diagnosed with breast cancer. LBBC helps improve the quality of life for these women by empowering them with the information they need to make the best and most informed decisions for themselves and their families. National conferences, monthly teleconferences, regional community meetings, the Guides to Understanding Breast Cancer and a toll-free Survivors’ Helpline are just a few examples of the services that are provided, always at little or no cost.

If someone you know has recently been diagnosed, is in treatment, recovery, years beyond their diagnosis or living with metastatic breast cancer, LBBC can help. For more information, visit lbbc.org, call (610) 645-4567 or download a free copy of Empower, LBBC’s general information brochure.

About Metastatic Breast Cancer Network
The Metastatic Breast Cancer Network, a national, patient-led organization, works to raise awareness of metastatic breast cancer within the breast cancer community and public. MBCN encourages women and men living with the disease to raise their voices to demand support, resources and more research for metastatic disease.
MBCN provides education and information to metastatic people and their caregivers. Visit mbcn.org or call (888) 500-0370 to access education, support and advocacy resources.

Julie Anne Mauro: “Strength in the Face of Great Uncertainty”

Sometimes getting out your feelings can be just the therapy you need. Living Beyond Breast Cancer offers a “Writing the Journey” Seasonal Writing Series that offers instruction and encouragement for women affected by breast cancer to use this creative outlet to express themselves. On this second installment of the LBBC Blog‘s Writer’s Corner, Julie Anne Mauro shares who own musing on diagnosis and LIVING with metastatic disease.

I Quit Cancer - April 30, 2012 – after an extensive month of tests and trying to get on a drug trial and finally getting on a treatment that is working.

I quit cancer

Seriously, I quit

It’s not a fun job

It certainly doesn’t pay well

And it just takes up too much of my time

I’m tired of Pink

I’m tired of Anti-pink

I’m tired of just being a number

Tired of being a patient

Tired of blood draws and infusions

Tired of looking in the mirror and not seeing myself anymore

Just the battle scars

Just the bitterness

Tired of thinking, will this be the last time I ……

*          *          *          *          *

Untitled – August  7, 2012

Can you do something more than just a prayer?

But fight for me

Fight for me

Show the world that I was once there

Fight for me

Oh fight for me

Let me know that somebody really cares

Fight for me

Oh fight for me

Show me there’s more than blank and empty stares

Oh fight for me

Oh fight for me

Even when I’m weary and on my last breath

Fight for me

Please fight for me

*          *          *          *          *

Julie Anne is a recent transplant to Arizona from New Jersey,  married, and a mother of 2 boys (8 and 14). In July of 2009, a week before her 44^th birthday, she was diagnosed with HER2+ breast cancer. After chemotherapy, a bi-lateral mastectomy and radiation, in May of 2010 her came up clean. She “beat cancer.” One month later, she found a lump in her chest wall–her cancer had spread to the lymphatic system and she was diagnosed Stage IV.  Since then the cancer has spread to her lungs, but she is still here and living strong every day with Metastatic disease.  Her motto is “Strength in the face of great uncertainty.”  Writing has been a great release for her and a way to express herself living in a world of unknowns.

Visit the LBBC Events Page for more information on the “Writing the Journey” Fall Writing Series. 

Amy Hauser: Horses.Healing.Hope. (Part Two of a Two-Part Series)

Amy Hauser never considered herself destined to be an author. From her self admitted “life-long inability to properly start and stop paragraph formations, among other things,” to being busy raising two children full time, a book simply was not on the radar.  Until God said otherwise. Today, the LBBC Blog welcomes back Amy to tell her story of how her religion and horses helped her to survive.

My journey through breast cancer also left me with a deep desire to positively impact other women who were travelling down similar paths. I knew that the compilation of my life’s trials had brought me to a point of greater connection with God, including during the breast cancer fight, yet realized not all women were similarly impacted. I felt led to point others to Him in a unique manner, while sharing our common struggles. I also wanted to address the aspect of cancer that seems to go almost unnoticed by the medical industry, which is to help guide women through the process of living beyond treatment as they navigate the often isolating stage of the “new normal” – where hair is growing back, the phone calls and meals dwindle and the doctors and surgeons release you from care. Fear and anxiety so often enter the scene and can consume a woman as she is often unprepared for this stage – a stage she was looking forward to with so much joyful anticipation!

Horses.Healing.Hope. (HHH) was created to help women navigate the inevitable emotional phases encountered during the healing journey. HHH blends nature, the horse and equine assisted therapy in a relaxed, peaceful environment, allowing women an escape from the everyday surroundings of post-cancer life. Horses have an amazing ability to reflect our emotional states – to help each of us identify and get in touch with our true heart – and its related wounds.

Today HHH offers sessions that meet weekly for two hours, for seven weeks. HHH has been a huge success in the North Houston, Texas area and we are excited to see it grow. We will also launch a program for newly diagnosed women facing breast cancer and are creating connections to women who have gone before them, to learn how to heal and grow in their walk with Christ.  These are not riding programs, but rather creative healing programs that utilize the horse as a tool toward increased overall healing.

In following this internal desire to help others, I have helped myself. Taking the focus off of my own circumstances and looking beyond, I have healed a part of my soul that could only be touched through serving the needs of others. Maybe serving should be a written prescription for all of us as we navigate life’s trials!

It is our dream to see HHH one day become the foundation of Made For More ministries HEALING RANCH. These ideas have been planted in my husband Tom’s and my heart for some time – to have a refuge that not only reaches out to cancer survivors, but also a place for entire families to have a respite from the ever-present “C” word – a getaway retreat that hosts both HHH retreats as well as ongoing sessions.

If you would like to learn more about Horse.Healing.Hope., sponsorship opportunities, Made For More, or IN HIS GRIP, please visit Amy and Tom’s website at www.MadeforMoreministries.com or like them on Facebook under “Made for More ministries.”

Annette Ramke, CHHC: Berry Almond Smoothie

We here at Living Beyond Breast Cancer feel it is important that no matter what stage you might be in–newly diagnoses, in-treatment, remission or recovery–your health and nutrition are paramount.  Today at the LBBC blog, we welcome back Annette Ramke,  certified health coach, cancer survivor and co-author of the book, Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, as she comes back for her monthly installment providing our blog readers with a tasty recipe and the real life reason it worked for her.

Smoothies were my go-to food during chemotherapy when I was too tired to make a meal or felt too nauseous to get anything solid down. Before I began making healthier choices with food, my typical smoothie was actually a milkshake – a few scoops of ice cream and some milk in a blender. Once I learned that I could make smoothies that were creamy, yummy and nutritious, I never went back to the milkshakes. I wanted to give my body what it really needed, especially while enduring grueling cancer treatment and trying to kick cancer.

I’m excited to share one of our favorite, delicious and easy smoothie recipes from Kicking Cancer in the Kitchen – the Berry Almond Smoothie!

This smoothie is energizing, filling and super tasty! Bananas offer potassium to help replenish lost electrolytes, and berries give a boost of antioxidants, those awesome little cancer fighters. You get your protein and some fabulous nutrients, like iron, calcium and magnesium from the almond butter. Anemia is common for those undergoing chemotherapy treatment and in many other people, and iron can help to treat this. Almonds are also helpful in relieving constipation, a common side effect of cancer treatment.

Photo Credit:
Steve Legato, stevelegato.com

Yield: makes 24 ounces

12 oz almond milk

1 banana

1⁄2 cup fresh or frozen raspberries

1⁄2 cup fresh or frozen strawberries

3 tablespoons raw almond butter

Combine all ingredients in a blender and mix at medium speed for about one minute or until mostly smooth. If a thinner smoothie is desired, add more water or almond milk and blend for a few more seconds.

Annette Ramke, CHHC, is a certified health coach and breast cancer survivor. She took an integrative approach to treatment and focused on a whole food, plant-based diet. She coauthored (with Kendall Scott, CHHC), Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, released October 2. Learn more at TheKickingKitchen.com.