Archive for the ‘young women’ Category

Beyond C4YW: LBBC’s Continuing Commitment to Young Women

March 3, 2014

LBBCbannerJean A. Sachs, MSS, MLSP, wrote the letter below to reflect on the end of C4YW and to remind you all that LBBC remains committed to serving young women affected by breast cancer. For more information about our upcoming events and programs, visit our website, lbbc.org.

Dear Friends,

This year marks the end of C4YW, an event that was founded in 2001 by Living Beyond Breast Cancer (LBBC) to address the needs of women diagnosed with breast cancer under the age of 45. The following year, we invited the Young Survival Coalition (YSC) to co-host the event with us.

Over the past 13 years the conference became the largest of its kind. LBBC and YSC worked as equal partners in developing the conference, marketing it and raising the funds necessary to meet the need. First and foremost in our partnership was our goal to provide the best information, support and networking possible for young women affected by breast cancer. We achieved that and so much more. More than 10,000 participants benefited from C4YW, and we allocated over $1 million in travel grants to bring women and caregivers to this unique, and many times transformational, weekend.

On behalf of LBBC, I thank you for your participation in the conference.

Last November, YSC informed us with the bittersweet news that they would be ending the partnership following the February 2014 conference. I want to assure you that while the C4YW brand will be “retired”, it in no way impacts the commitment LBBC has to serving young women.

LBBC has been serving young women since 1996, and our strong commitment to providing robust services for them and their caregivers remains steadfast. Currently, LBBC’s Young Women’s Initiative includes:

I am so proud of the rich, timely and compassionate programs LBBC offers young women through our Young Women’s Initiative. In the coming months, I will be working with the board and staff to identify new ways to add to our programmatic offerings that serve this important LBBC constituency.

Onward,

Jean A. Sachs, MSS, MLSP
LBBC Chief Executive Officer
Toll-free Breast Cancer Helpline: (888) 753-LBBC (5222)
354 West Lancaster Ave., Suite 224
Haverford, PA 19041
(855)-807-6386

Our New Vision and Mission

August 20, 2013

2012JeanSachsHeadshotVer2Web

This morning, Living Beyond Breast Cancer’s CEO Jean Sachs released the following message to our friends and supporters:

Dear Friends:

All of us at Living Beyond Breast Cancer are excited to share our new vision and mission statements with you:

Our new vision

A world where no one impacted by breast cancer feels uninformed or alone.

Our new mission

To connect people with trusted breast cancer information and a community of support.

These new statements were developed with the help of over 1,200 of you who responded to a survey we sent out earlier this year. Your input was used in a day-long retreat with members of the board of directors and staff. We learned what LBBC services are valued most and why so many have come to depend on our educational programs and services that allow for connection to others diagnosed with breast cancer.

For me, these new statements say with clarity what we strive to do every day and what we hope to achieve over time. Yesterday, I spoke with a long-time friend who had just been diagnosed with breast cancer.  She was overwhelmed, scared and shocked. Our conversation and the resources I was able to put in her hands grounded her and provided her with enough comfort and confidence to take the next step.

This is what LBBC does every day, and it is exactly what the new vision and mission statements express.

I hope you share my enthusiasm and, as always, if you have comments I would love to hear from you.

Warmly,

Jean 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer

LBBC

Give LBBC Your Feedback About Peggy Orenstein’s New York Times Article, “Our Feel-Good War on Cancer”

May 3, 2013

2012JeanSachsHeadshotVer2WebBy Jean A. Sachs, MSS, MLSP, Living Beyond Breast Cancer’s chief executive officer 

Journalist Peggy Orenstein ignited a debate when she explored the limits of mammography screening and the dangers of overtreatment for breast cancer in her New York Times Magazine article, “Our Feel-Good War on Cancer” (April 25, 2013).

For many in the breast cancer community, Ms. Orenstein’s observations come as no surprise. We know survival rates for women with metastatic disease have not changed, despite the widespread adoption of breast cancer screening. That women with ductal carcinoma in situ, or DCIS, often receive the same treatments as those with invasive disease—along with the related side effects and emotional distress. That more and more women choose prophylactic mastectomy after a diagnosis of DCIS or early-stage disease. And that our sisters with stage IV breast cancer remain silenced, isolated and underserved.

Still, the article introduced thousands of people to the realities of breast cancer today. As we talked about it at the LBBC office, we had many questions. How did this piece impact you and your loved ones? We want to know:

  • What is your perspective?
  • What questions does this article prompt for you?
  • What are your concerns for your health or well-being, based on what you learned?
  • Which issues deserve more discussion?

Based on your feedback, Living Beyond Breast Cancer will design a program to help further discussion. Please post your comments below, and our staff will review them.

I Talk To Strangers, You Should Too!

March 28, 2013

randi rentz

Long time LBBC blog contributor, RANDI RENTZ, graduated with honors from The Johns Hopkins University with a Masters degree in Special Education. She was an editorial assistant for a publishing company in suburban Washington,DC before becoming a special education teacher in a school district outside Philadelphia, PA. Randi currently is an Asperger’s Support Teacher for grades kindergarten through fifth. Presently, Randi has her own consulting company for children on the Autistic Spectrum where you can see her work at   www.helpforaspergers.com. She is a proud member, supporter, and blogger for many breast cancer organizations and never leaves the house without diamonds. Visit Randi at her web site at www.randirentz.com. Be sure to check out the teaser for her upcoming book “Why Buy a Wig…When You Can Buy Diamonds!”

***

Call me crazy, but I look forward to waiting in line, and just about any opportunity to shoot the breeze with people I don’t know. I’m chummy with the guy who pumps my gas, (the only gas station nearby where they still pump gas for you), still exchange holiday cards with my 4th grade elementary school teacher, and the other day I spent a solid hour gabbing with an 81-year old woman I met at the tailor’s while having my pants hemmed.

I’m now a life-long, die-hard people person. I never used to be, though. In fact, I never enjoyed chatty encounters with people I didn’t know…until cancer. I wasn’t hostile before breast cancer.  Every day I had pleasant exchanges with strangers and acquaintances—an enthusiastic “Morning!” or a friendly “Have a great day!”  Such moments continue to be life-affirming, yet, prior to breast cancer, they were blessedly brief.

On-the-fly updates from people I’ve barely met used to drain me. Seriously.  I always felt obliged to respond with genuine emotion, to pay real attention. I would fake outrage or concern, with a performance that was definitely Oscar worthy. That meant stopping whatever I was doing, and force myself to focus. Since my laser-beam concentration was always sensed by the people stopping me, their details got longer and longer. Oy, vey! I felt trapped like a mouse in a maze.

Did breast cancer make me a people person? Well, I think it made me more aware of the little moments in life that make up the big moments. I now enjoy being a true people person—even though I’m inclined to dislike anyone who describes himself/herself this way. Go figure. I digress, sorry. Anyhoo, hear me out. Lifting your head and engaging with whoever happens to be standing next to you is worth the effort. It’s nice to see people smile and to genuinely smile back. It really feels good and refreshing. You should try it.

For one thing, you never know when you will receive priceless advice.  The 81-year-old cautioned me to get in good with my son’s future wife and to always take the dog out for an evening walk to do “its business.” Little did she know, I have no children and own two cats which use a litter-box. Needless to say, I felt it worthy to file away her words of wisdom. Maybe a stepson and a dog are in my future. Who knows? I digress. Sorry. When I left the fitting room, fiddling with the waistband of my pants, she said, “With posture like that, who needs Spanx? Coming from a stooped octogenarian, her words felt like a wake-up call to enjoy my youthful existence.

I believe my world is bigger with my random encounters. My brushes with strangers bring me the thrill of the unexpected, to glimpse a world I used to brush off and otherwise never see or appreciate. In the frenzy of life, with intense money, work and time pressure, I honestly didn’t have much conversational energy to spare.

Now, I think of it as a habit as “meeting new people,” even if I never see them again. My encounters with strangers bring me back to a place where I long to be. I never had grandparents, because they died before I was born.  But now I cherish chance meetings with people of all ages, especially older people. I find their perspective to be rather eye-opening.

Instead of rolling my eyes, I appreciate the interruption. I am so grateful for the little things in life. I now understand what being a warm person means.

And now, onto the Spanx…

LBBC Introduces New Guide To Understanding Breast Cancer

March 25, 2013

Layout 1

Living Beyond Breast Cancer (LBBC) has announced the release of Hormonal Therapy, the newest title in this national nonprofit’s library of Guides to Understanding Breast Cancer. It joins nineteen other LBBC publications available in print and electronic formats designed to address the needs of women who have been diagnosed with breast cancer.

 

The guide provides insight and answers about the complexities of hormonal therapy, treatment that reduces estrogen in the body, for women with breast cancer. Hormonal therapy for breast cancer is sometimes referred to as endocrine or anti-estrogen therapy. Breast cancer hormonal therapy can reduce the risk of disease recurrence, prevent new breast cancers and improve survival. Approximately 70% of breast cancers are hormone-sensative¹ and many women are likely to receive hormonal therapy as adjuvant therapy – treatment given after primary therapy.

 

The Guide to Understanding Hormonal Therapy was co-authored by Janine E. Guglielmino, MA, LBBC’s director of publications and strategic initiatives, and medical writer Robin Warshaw.  “At Living Beyond Breast Cancer, we know women face many choices when it’s time to begin treatment for hormone receptor-positive breast cancer,” Guglielmino states. “This guide was developed to help women ask their providers informed questions about how hormonal therapies and their side effects may impact their day-to-day lives.  And since hormonal therapy lasts for many years, the guide aims to address the questions women have today – as well as those that may arise tomorrow – as those concerns may very well change over time.”

 

In addition to Guglielmino and Warshaw, a committee made up of more than a dozen oncology professionals, LBBC staff and women affected by breast cancer reviewed and contributed stories to the sixty-six page guide, which is divided into eight sections and written in clear and easy-to-understand language.  Section topics include hormonal therapy options, common questions about treatment decisions, coping with side effects, what to expect when treatment ends and additional resources.

 

The guide focuses on hormonal therapy for early-stage (ed. note – stage 0-II) or locally advanced (ed. note – stage III) hormone receptor-positive breast cancer. Hormonal therapy is also used to treat recurrent and metastatic (stage IV) hormone positive disease and to prevent first breast cancers in women at high risk for developing breast cancer.

 

“We believe women can play a powerful role in their treatment when they have the resources to help them make informed decisions and be full advocates for their own health,” say LBBC CEO Jean A. Sachs, MSS, MLSP. “In addition to this guide, LBBC has additional resources at lbbc.org.”

 

Free, individual copies of the Guide to Understanding Hormonal Therapy are available online or by calling (610) 645-4567. Larger quantities may be ordered for a small shipping and handling fee.

 

¹National Cancer Institute

Fear of the Unknown

March 19, 2013

Vallory Jones Blog Photo

LBBC blogger Vallory Jones is a freelance writer and breast cancer survivor living in Austin, Texas.  A self-professed Zumba “freak” and fitness “fanatic,” she has taught middle school English for 19 years and enjoys mountain biking, singing, writing, and playing guitar.  She recently celebrated a milestone – her first “cancerversary.”  You can read her personal blog at victoriousval.wordpress.com.

I received my diagnosis on Monday afternoon, and by Wednesday morning, I was en route to the oncologist. Dr. Patt came highly recommended, and I felt lucky to score such a last minute slot. The receptionist mentioned the doctor would be leaving for the airport immediately after our meeting, and after having gone to the wrong address already, I frantically punched it back into my GPS, racing to beat the clock. My Kia Soul was a black blur as I zipped in and out of Austin traffic. I couldn’t allow this cancerous tumor to stay in my body any longer than I absolutely had to, and the thought of missing my appointment brought on waves of nausea. I tried to will the tears to stop, but they streamed down my face until I was sobbing full force. I pulled into the parking garage and collected myself. “Wow, you’re a mess,” I told myself, but looking back, I was just a cancer newbie. I wasn’t properly equipped to process this turn of events.

Things sure changed in a hurry. One minute I was planning parties and social hours and the next I was sitting in a doctor’s office gearing up to beat breast cancer. I looked around the waiting room. There were other women who had no hair, and I trembled. “We all have cancer,” I realized. It was an unnerving feeling, and though I physically felt fine, I realized for the first time that something inside me was actively trying to kill me. Words can’t describe that realization. It changed me.

The meeting itself was pleasant enough. My doctor entered the room clad in a grey tweed skirt and jacket. I looked down, and my attention settled on her fashionable, black leather boots. Though I wasn’t aware of her credentials yet, her ensemble impressed the heck out of me. Kelsey, one of my friends, took notes, and I was glad she came along because it was amazing how little information I actually retained. Every time Dr. Patt spoke of the cancer, I felt a rush of heat overwhelm me, and it seemed like maybe I should lie down or at least fan myself. A couple of times I swore I was going to vomit, but that never came to pass.

Invasive Ductal Carcinoma. Most likely Stage 1. Fast growing. ER+/PR+. Lots of medical jargon made way into Kelsey’s notes, and at that moment, it was quite clear that there was no mistake. I really did have cancer, and no amount of disbelief could ever change that. Dr. Patt’s demeanor was reassuring, but my anxiety worsened when she uttered acronyms like MRI and CT scan. Then the words “bone scan” tumbled out of her mouth and slapped me hard in the face.

“Bone scan?” I squeaked. “What? This could be in my bones?” She seemed to think that was unlikely, but talk of these tests put me on pins and needles. I remember clearly the one thought I had for weeks, “I hope that I have a chance to fight this. What if it’s spread and I’ve missed the window?” Now, as a more experienced survivor, I realize that even at advanced stages, one can still live and fight cancer, but as someone who’d never even had anyone close to me diagnosed, I feared the worst. Add to my fears the possibility of chemo, which couldn’t be known, of course, until further testing. My head threatened to explode. Part of me was ready to jump off the table and get started while the rest of me wanted to bury my head in the sand and pretend this wasn’t real. I knew I couldn’t, though, because every day I waited, I feared my tumor was growing, or even worse, spreading to other places.

There aren’t adequate words to capture how I felt during those first weeks. I waited. I wondered. Would I see another birthday? Would I get another Christmas? My days were filled with tests and alternated between moments of strength and desperation. The poking and prodding made me feel like a science project, and if I never see a hospital gown again, it will be too soon. Like every other survivor will tell you, any modesty I had prior to cancer was certainly lost within the first week of my diagnosis. Getting up each day, putting one foot in front of the other, and making myself go to appointments was harder than anything I’d ever had to face.

I’m sure that’s why 16 months later, I feel invincible and like I should wear a cape every day to work, the grocery store, or the gym. As far back as I can remember, I’ve always had role models. Now here I am, my own hero. Quite honestly, that feels pretty good.

“My mom had breast cancer.”

March 1, 2013

DalyFamilyPhotoforBlog

Drew and Courtney Daly and their boys

Courtney Daly was 37 years old when she was diagnosed with stage I invasive breast cancer, which manifested as two tumors in one breast.  In addition, she also learned that she had DCIS in both breasts. It is now one year since her diagnosis.  

Recently, her son Aidan completed a video project for school.  Let’s have him share his story in his own words. 

Hi, my name is Aidan. I made this video for a school project called “Think Care Act”.  For this project you choose a problem you care about and do something to help. Originally I wanted to raise money for LBBC, but then I decided to create a pamphlet and video for kids my age who might be scared if their moms have cancer. I wanted to help them know that there are other kids out there and people know how they feel.

This video tells the story of how my family and I got through my mom having breast cancer. My mom was diagnosed at age 37. She was one of the 10% of women diagnosed with breast cancer who are under age 40. It was really hard at first knowing my mom had breast cancer. But as we talked about the survivors we knew it got a whole lot easier. My parents were very reassuring and that made me feel better. Throughout the spring and summer, my mom had two surgeries, four chemo treatments, and tons of doctors appointments. She tried her best to come to my baseball games and other special events. She is an awesome-sauce mom!

I hope that this video helps many kids my age, and lots of families. If you are gong tough times right now I hope this video helps you.

Rachel Pinkstone-Marx: Book Review and CONTEST GIVEAWAY!

February 1, 2013

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 Series

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!

annette1Annette 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

January 8, 2013

For Immediate Release:

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

MBCS: Newly Diagnosed

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.

Randi Rentz: What to Say (and What Not to Say) when Your Friend is Diagnosed

October 25, 2012

During Breast Cancer Awareness Month, we are asked to support and honor women from all over who are living with the disease. Whether it’s wearing your pink ribbon, donating to Living Beyond Breast Cancer, or simply talking with a friend or loved one who has been diagnosed, you are doing your part. Today, the LBBC Blog welcomes back avid writer, Randi Rentz, as she discusses the ups and downs of comforting a newly diagnosed woman.

A friend called recently. She had just learned that another friend of ours was diagnosed with breast cancer. She could not stop crying after she received the news and had not yet called our friend to offer her…what? What is the right thing to say? What, as a good friend, do you do? My friend called me, thinking I had all the correct answers. She wanted to know if she should stop by our friend’s house (in between sobs). She also wanted to know if she should leave her alone. Seriously. What to say? What to do?

As a survivor, I was touched by the many people who reached out to me, but sometimes, I really had to wonder, what people were thinking. I should have written down some of the things people said to me. Wishful thinking. Although people had good intentions during my diagnosis, I really yearned for friends and acquaintances to “Think Pink” before speaking the “Pink Language.” Let’s face it, my friends were well-meaning, but I was irked.

As we all know, pink is the universal color for breast cancer. It is everywhere. I’ve always loved the color pink, all tones, tints and tinges of it. What can I say? I’m a girlie-girl who loves any shade of pink; especially hot pink. It’s way bolder than blush-and not the least bit bashful. Although I LOVE, LOVE, LOVE, the color pink, please don’t tell me pink is my color; especially the same day of my diagnosis. Yup.

Empathy is wonderful, but please don’t say, “You MUST live!” (Duh!!!) or “Are you going to die?” (Geez!!!) And, PU-LEAZZZE don’t say, “My aunt, friend and/or grandmother died of breast cancer.” Ugh!

(I digress…sorry) To be honest, I didn’t know what I wanted other than to inch into my bedroom and wait for my doctor to call me with the next bit of medical information. I was completely self-centered (totally deserved.) I did not think about whether or not I wanted my friends to call, so in hindsight, I can see what a predicament the situation put them in.

So now I know you are thinking uh oh. What did Randi say to her friend who called her or what if I call a sick friend and say the wrong thing? What if I give them words of support and they want to say something snarky to me?  Or, what if I bawl my eyes out when I hear her voice?

I can only tell you based on my own journey into “Cancerville” what I think might be just the right thing to do. Here is my short list of do’s and don’ts:

  • DON’T make remarks about your friend’s lifestyle. Keep your comments such as “How can you not know that by smoking you were putting yourself at risk?” to yourself. People need to come to their own conclusions about themselves.
  • DO Listen. You are there to give your love and support.
  • DON’T ask your friend if you can bring a meal or help somehow.
  • DO say I’m going to take your carpool days. What time do you pick up the kids from school? Or, I am bringing over a meal for Sunday. What time works for you? Whether it’s a carpool, a doctor’s appointment, a meal or an errand, make yourself available, and be specific about what and/or how you will be helping your friend. Just DO it! My dearest friend made a meal chart, sent it out to all my friends via email and had everybody sign up for a meal (breakfast, lunch or dinner) during my entire treatment. She really earned her golden angel wings for taking charge!
  • DON’T say, “You are going to be fine!”  That was the one-liner that really irritated me. In fact, any reference to being fine can magnify the situation. Do you know for sure that your friend will be fine?
  • DO say, “I’ll be here to support you during and after your treatment. Enough said.
  • DON’T call your friend and unveil the story of how you heard the cancer news, where you were when you found out, how you were told and how upset you are. Also, please don’t say, “Why didn’t you call me right away?” Please remember, this isn’t about you and your feelings, it is about how much you want to support your friend. All of the other details can come later. As she processes her experience I practically guarantee that she will want to tell you anyway.
  • DO call your friend and offer your support and encouragement. You can open the conversation like this: “Oh Dee! I just heard that you are sick. How are you doing?”  It’s really not so horrible to cry, as long as you don’t make the conversation about you.

When I was diagnosed with cancer, I believe people saw me differently. Deep down I knew that I was still me, and I wanted to be treated the same as ALWAYS. In the back of my mind, I couldn’t believe I had a diagnosis of DCIS. Breast Cancer? ME? Being sick is so overwhelming, that to have friends come along and lift you out of many overshadowing thoughts, even for 30 minutes, is TRULY wonderful. It made me feel almost normal. Doesn’t normal feel so good?

As I said, I am not an expert. I know only how I felt during my journey into ”The Pink Bubble.” I think as a whole, the dos and don’ts are great guiding principles to stick to. As a friend, your role is to support, help and send love. That pretty much sums it up.

To learn more about Randi you can peruse her blog or read excepts from her book, Why Buy a Wig…When You Can Buy Diamonds!, when you visit her website.


Follow

Get every new post delivered to your Inbox.

Join 177 other followers