Discussing Fertility Preservation with Young Patients Diagnosed with Cancer

Kristin N. Smith, a patient navigator at Robert H. Lurie Comprehensive Cancer Center, blogs about some fertility options healthcare providers could discuss with young patients diagnosed with breast cancer. Ms. Smith is the speaker for our webinar, Fertility and Breast Cancer: Educational Opportunities and Preservation Options. Register now for this program and discover more about how you can help young women learn about fertility after breast cancer.

Kristin N

Providing care to young cancer patients who wish to pursue fertility preservation prior to initiating cancer treatment requires the collaborative efforts of oncologists, reproductive endocrinologists, nurses and many more within a short time frame.

Being able to effectively communicate and educate patients about the potential gonadotoxicity of cancer therapy, or damage to reproductive organs caused by treatment, and the available options for fertility preservation is essential to improve patient care. Many of the treatments we use to treat cancer for adolescent and young adult (AYA) women can decrease the likelihood of having biological children. High dose alkylating agents and pelvic radiation can destroy the ovarian reserve; radiation to the brain can harm the way the brain communicates to the gonads and surgical resection of reproductive organs can all make family building more difficult for patients.  Continue reading

TNBC Aware: From TNBC Diagnosis to TNBC Champion

Roxanne Martinez contributed this blog post for TNBC Aware. She reflects on her experience from getting diagnosed after learning she was pregnant, to becoming a triple-negative breast cancer advocate.

 

OLYMPUS DIGITAL CAMERATriple-negative breast cancer. I was devastated to receive the diagnosis in November 2010, shortly after learning I was pregnant. My entire life flipped upside down.

With a rollercoaster of emotions, I turned to the Internet to learn everything I could about the disease. None of what I read was encouraging about triple-negative breast cancer – the particularly aggressive type that is more likely to recur than other subtypes of breast cancer.

Prior to my diagnosis, I didn’t even realize that there were different types of breast cancer. With no family history of the disease, I was left to navigate the unknown and forced to become my own health advocate. Fortunately, I found online resources and support networks, such as the Triple Negative Breast Cancer Foundation and Living Beyond Breast Cancer, that connected me with other women battling the disease.

I knew I had found the right medical team to treat my breast cancer when I shared my intent to carry out the pregnancy and my oncologist informed me that there were options to do so. Timing would be everything in my case. Based on the size, grade and aggressiveness of my tumor, my medical team recommended a treatment plan that included an immediate mastectomy, followed by chemotherapy — all while pregnant.  I would begin chemotherapy during my second trimester, when research has shown to be safe for an unborn child.

After much research, soul-searching and prayer, I proceeded with treatment. Though it was a rough pregnancy, my baby’s resilience, along with fellow cancer survivors and a nationwide support network nicknamed Team Roxy, kept me going strong and inspired me through my journey.

The physical side effects of treatment were only part of the battle. Coping with breast cancer while pregnant made me an emotional wreck. There was absolutely nothing any doctor could tell me that would alleviate my fears. I wouldn’t be at ease until I could physically see and hold my baby. That time would come sooner than I imagined. Continue reading

Our New Vision and Mission

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

Julie Clark: Living Is What We Strive For…You Are The Best Medicine

Today the LBBC blog would like to reintroduce Julie Clark, one of the women featured in the Faces of Metastatic Breast Cancer video. Julie is the author of a new children’s book, You Are the Best Medicine, providing an inspiring and heartfelt story about honestly sharing your breast cancer journey with your children. Here she offers our readers her moving words in two ways: for you and for the children.

beyond – n. something that lies farther ahead

I think about the words living beyond breast cancer, and I wonder if I am. Living beyond. The implication of those words is that it’s no longer with me – that I’ve left it behind. I envision a long-distance runner on a dry, dusty track, sprinting ahead of the others and leaving only tread marks on the path. In some ways I am that runner. Although diagnosed with stage 4 breast cancer in 2008, I am told that there is no longer any evidence of disease in my body. And for that, every day, I am grateful.

But some events in life stay with us always, like it or not.  We do not move beyond being mothers, for example; we do not leave behind the sadness of the death of a loved one. Nor do we want to. Memory makes our lives textured and rich. And much as I have learned to live with the endurance of the long-distance cancer survivor, much as I want to move beyond this beast’s ugly and awful reality, the trick of cancer is its insidious voice whispering “Here I am” and its ability to keep up.

Were you a fighter before you heard the words, “You have cancer”? I didn’t know I was. But the instinct I felt when my daughters were born – that survival/teeth bared/depth of love/kill or be killed instinct – kicked in when I was faced with a disease that could rob me of my family, and I fought back.

Julie Clark is the author of
“You Are The Best Medicine”

I still fight back in a number of ways, every day. Once I learned the disease had left my body, I took exercise a lot more seriously. I ate lots of green things that I hadn’t tasted before, swallowed pills as round and dry as buttons, and gave myself permission to slow down – to breathe.

How can I find the strength to move ahead? I see my family cheering me on, their flags waving and their hands clapping. I look in my daughters’ eyes and I feel they have coached me for this, this powerful strength that blossoms from their hearts and surrounds me with a feeling of triumph. And, I realize, that this is what it means to move beyond. But even more important is the first word in the phrase living beyond breast cancer. It is that which we strive for – that beautiful adjective.

Living – adj. active or thriving; vigorous; strong

A page from “You Are The Best Medicine”

For a child, watching a loved one go through cancer treatment is scary. In this courageous and sensitive book, Julie Clark creates sweet and poignant memories that remind children how important their support is during a time when optimism and love are most needed.


For more information or to order Julie Clark’s book, You Are The Best Medicine, visit the website , “Like” it on Facebook or check it out on Amazon.com.

Tomorrow is another day…

This entry was written by Donna Helmes, a participant of the 2011 Fall Writing Series:

When I was a young girl, my father took me to see an afternoon showing of the movie, Gone With the Wind.   Just one look at the beautiful, larger-than-life Scarlett O’Hara and I was hooked.  I took many things about the story to heart, including Ms. O’Hara’s belief that “tomorrow is another day,” –  and, that there is always time to deal with things in the future. 

In my own life, I had put off a personal life to pursue my career. What about a serious relationship? A relaxing vacation? Having a family of my own?  Well, after all, tomorrow is another day…

Then in 2008, during a routine mammogram, an eagle-eyed radiologist discovered a mass.  After a diagnosis of breast cancer (invasive ductal carcinoma), a bilateral mastectomy and 4 rounds of chemotherapy soon followed. As I recovered from treatment, I was filled with regret over missed opportunities; I grieved for things I believed that I would never have. My heart broke at the realization that I would probably never have a child of my own.  I no longer believed in tomorrow.  I thought my life was over before it ever really had begun. 

I hated having breast cancer. Period.  I do not want any woman to have to face this diagnosis, nor do I want my cancer to return.  It was hard to go through treatment and to live with its aftereffects.  Yet, a funny thing happened on my journey through Cancer Town.  I stopped mourning my tomorrows and began to live for today.

I wanted to live my dreams. Most cancer patients have fantasies about climbing Mt. Everest or…running with the bulls in Pamplona. Me?  I didn’t think I needed a big life to have a great one. I started digging in my garden and discovered that I absolutely love flowers.  I bought a small house near the river with a wonderful area for roses and a vegetable patch. I took long walks and cut back on my hours at work.  I borrowed books from the local library and sipped wine at lunch with friends. 

I took a deep breath and signed up for a poetry writing class with Alysa Cummings through Living Beyond Breast Cancer. The idea of participating terrified me; therefore, I knew that it was the right thing to do.  I had never written poetry, though I had kept a journal for many years.  Interestingly, once diagnosed with cancer, I found I could no longer write a word.  At first, I attributed this to “chemo-brain,” but my writer’s block continued long after my treatment ended.  I realized that I was afraid to write. Scared to express how I felt, scared to release all those complicated emotions – anger, fear, resentment, uncertainty – that go along with having a diagnosis of breast cancer.  I feared becoming overwhelmed by them. 

Luckily, rather than being overwhelmed, I felt lighter and empowered by the class.  It provided me with a safe space to process my experience and I learned what being a breast cancer survivor means to me.  I found myself writing once again.  At night I would pop open my journal, excited to fill the blank pages. 

After treatment, and with the promise of a very good prognosis still ringing in my ears, I contacted the Social Services Adoption Division. Nine months to the day, they placed my daughter in my arms.  This summer, she and I chased butterflies and ate cherry tomatoes from our garden.  We celebrated the holidays and together we rang in 2012.

Meet Bella…

I have to say this was my best New Year yet and, though I am looking forward to 2012, I am enjoying living for today.

There will be a Spring Writing Series beginning in mid-March. Be sure to visit LBBC.org for more information.  This 2012, how will you define your breast cancer diagnosis and channel the devastation of your breast cancer into an outlet of positivity?

Your Fashion Bug of the week

Alice Budno Hope is one of five vibrant and strong women selected to represent Living Beyond Breast Cancer during Fashion Bug’s Breast Cancer Awareness Month Campaign.  Throughout October the women’s clothing store, with nearly 700 stores across the United States, will support LBBC by donating 100% of proceeds from the sale of a one-of-a-kind inspirational tee and by asking their shoppers to make a contribution by rounding up their purchase to the next whole dollar.

For women who have been diagnosed with breast cancer, October is often a month filled with emotion. While every woman expresses their approach to the month differently, Alice reminds us of what enticed her sense of taste. The taste of fear came lurking after Alice’s breast cancer diagnosis.

I am honored and humbled to be one of the five women chosen for Fashion Bug’s Breast Cancer awareness campaign to support Living Beyond Breast Cancer.  The experience has introduced me to so many fabulous people and allowed me to be featured on a billboard in Times Square!  Can’t beat that!

The idea of the five senses became an alluring theme. Each of us have a breast cancer story, of course. But from person to person, our story is a reflection of one ideal sense that created the most appealing significance in our individual journeys. For me, it was my ability to taste.

Prior to my diagnoses in May of 2006 I was tasting… a lot…of food!  I was 31 years old and 28 weeks pregnant with my son, Hunter.  I had just lost my Dad a few weeks prior to my diagnosis.  My taste for life was just rebounding a bit and then – BAM!  How could this happen?  What would happen to my baby?  It was all a swirl of madness and a week after my diagnosis I was operated on…on my birthday. 

When I returned from the OR and a white box was delivered.   I opened the box to discover the hospital had sent me a birthday cake.  I certainly did not have a taste for my birthday that year.  I recovered nicely, enjoying the tastes of all of the foods that were steaming into my home, donated by people I barely knew, who have since become my closest friends.  Maybe I could regain my taste…through the help of others.

Two months after surgery my mouth would again water, thanks to the delightful smell of my blessed son, Hunter Louis, born happy, healthy, and on time.  His first taste in life was breast milk – ironic thought my Doctors.  They said I would not be able to sustain him on half power!  How wrong they were!  My beautiful son nursed for five months, on my terms! 

For the next several months I had a taste of fear.  A fear of recurrence.  I made the decision to have a prophylactic second mastectomy, on my terms.  I lost the taste for fear.  I had no time for cancer in my life.

And here I am, 5+ years later.  I have a zesty taste for life.  I love to educate young women about breast cancer.  One of the main things that I aimed to show through my participation in the Fashion Bug Photo Shoot was: “your life can go on after a cancer diagnosis.” 

I have tasted my children’s birthday cakes, my friends’ wedding cakes, wonderful dinners with my husband, and lots of wine with my mom, and so much more.  I look forward to tasting the graduation cakes of my children, their wedding cakes, my husband’s retirement cake and my 80th birthday cake…at minimum!

Throughout Breast Cancer Awareness Month, Fashion Bug stores will donate 100 percent of proceeds from the sale of an Inspirational Screen Tee to support our educational resource Guide for the Newly Diagnosed and LBBC’s Survivors’ Helpline, a personalized matching service that connects women in similar circumstances in a confidential setting.

You can order online or find a store nearest to you!

No Pink Ribbons Required

This entry was submitted by MJ DeCoteau, executive director and founder of Rethink Breast Cancer:

Most of us in our 20s and 30s are far too busy building a life, a home, a family, a career to think about breast cancer. And when it does strike a young woman, it’s a complete and utter shock. Rethink Breast Cancer was created by young women for young women. We’re working hard, creating savvy support, awareness, education and research programs that speak to the unique needs of young (or youngish) women busy balancing full lives.

I was just 18 years old when my mother was diagnosed with breast cancer and 22 when she died. My grandmother also had breast cancer so I felt like a bit of a ticking time bomb. When would I get it too? I picked up breast self-exam pamphlets at my doctor’s office, but they all featured a senior citizen on the cover and were very medical looking, even a bit scary. I remember one featured a water-color illustration of the naked back of a woman turned into a dark, shadowy corner to check her breasts. I opened it up and it was a three page fold-out of tiny black type—a thesis dissertation on how to check your breasts! Needless to say, I tucked it in a drawer and eventually chucked it out.

These drab brochures weren’t inspiring me so how would they motivate my friends and other young women who didn’t even have a family connection to breast cancer? Another challenge: I wanted to raise funds to fight breast cancer but pink ribbons, angel pins and traditional galas and golf tournaments weren’t for me. I saw the need for a breast cancer organization that was relevant to my generation.

In March 2001, with the help of an incredible group of passionate, energetic and creative people, Rethink Breast Cancer was born. Our mission: to help young women (and men!) concerned about and affected by breast cancer.  I was really inspired by the AIDS movement of the early 90s—with its bold, in-your-face messaging and hip and cool fundraising events. Why did breast cancer always have to be wrapped in a pretty (sometimes even tacky) pink ribbon?

By working with the fashion, music and design industries, we aimed to tackle the serious issues of breast cancer in a bold, creative, upbeat way. Today, Rethink Breast Cancer has a roster of events and initiatives, everything from Boobyball to Breast Fest, the world’s first breast cancer related film festival.

What’s also exciting, Rethink Breast Cancer has evolved from an awareness movement and funding cutting edge breast cancer research to also providing much needed emotional and practical support for young breast cancer patients.

Young women with breast cancer can face unique challenges—delayed diagnosis, aggressive treatment, fertility, child care and financial obstacles. Yes, the numbers of young women diagnosed each year are a small percentage of the total number of breast cancer cases. But, the needs are very real and Rethink is all about filling the gaps. We see ourselves as specialists. The message we send to the women we serve: We act your age! Often it’s the small details that make a difference. We’ve taken support out of the hospital setting and have tried to create support environments that have a young woman in mind—sunny lofts, cool retail spaces etc.

Over the years, and with incredible help from partners and volunteers, we’ve been increasing the number of support programs we offer to young women.

When I think back on how Rethink began almost ten years ago, I realize how far we’ve come. But we still have a long way to go. The explosion of Social Media spaces has made it easier than ever for people to share their stories, have their voices heard and be a part of an on-line community. We are very busy right now revamping our website, blog and Facebook fan page. It’s all about staying relevant and current, right?

Rethink started from my own personal experience but  it’s the hundreds of young women that have gotten involved that are driving our organization. It’s their stories that are shaping Rethink’s future. Please share yours with us at rethinkbreastcancer.com

In essence of graduation season, LBBC is highlighting young women and students who are in some way affected by breast cancer. Could you benefit from programs that are dedicated to young breast cancer survivors? Are you a young woman who is a loved one of someone affected by breast cancer? Share your thoughts on our facebook page.