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

Addressing a Gap Identified in Our Needs Assessment of Young Women: Discussing Fertility After Breast Cancer

Whether treatment will affect their ability to have children in the future is one of the most common worries among young women who are diagnosed with breast cancer. LBBC’s Arin Ahlum Hanson, MPH, CHES, manager of the Young Women’s Initiative and YWI Program Coordinator Ingrid Mapanao blog about this gap, in anticipation of an upcoming healthcare provider webinar on fertility and breast cancer. 


LBBC’s Arin Ahlum Hanson, manager of the Young Women’s Initiative (left) and YWI Program Coordinator Ingrid Mapanao (right).

The National Comprehensive Cancer Network guidelines recommend all premenopausal women diagnosed with breast cancer be informed about the potential impacts of treatment on their fertility and asked if they would like to have future pregnancies. LBBC’s national needs assessment of over 1,500 young women affected by breast cancer found that only half of the young women surveyed reported discussing fertility issues with their healthcare providers. Of those women who did discuss fertility impacts with their providers, the majority of those women initiated this important discussion with their healthcare providers rather than having their healthcare providers bring up the subject.

LBBC is working to close this communication gap by educating healthcare providers through an upcoming webinar. Healthcare providers participating in this webinar, Fertility and Breast Cancer: Educational Opportunities and Preservation Options , will learn about fertility preservation options available for young women and how breast cancer treatments impact fertility. The webinar will be held on Wednesday, March 18 from noon-1pm ET and the guest presenter will be Kristin N. Smith, a fertility preservation patient navigator at the Comprehensive Cancer Center of Northwestern University in Chicago.

Free CEUs will be given to the first 150 nurses and 150 social workers who register!

Our hope is that many healthcare providers join our Young Women’s Initiative’s commitment to strengthen and expand programs for young women affected by breast cancer. Healthcare providers can do this by participating in the webinar. If you’re a healthcare provider, register now to learn the roles you can take to educate your young patients about their fertility options.

Our New Vision and Mission


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.



Jean A. Sachs, MSS, MLSP

Chief Executive Officer


A year later with hair twice as long

It was a year ago that our corporate sponsor, White House | Black Market, partnered with us for a call-out to honor and highlight 25 inspiring women who are living beyond breast cancer. All 25 women were dolled up for an expense-paid photo shoot and then featured in White House | Black Market’s Breast Cancer Awareness Month catalog.

Wonder how the experience changed the women over the last year? Let’s hear Jodi Inverso’s story:

I can’t believe a year has gone by that I was on the set of The Early Show and in a penthouse studio being made over, with my mom by my side, by the most talented stylists for a photo shoot that changed my life forever.

When LBBC sent out an email asking for “the next survivor star” I submitted my photo and story about my breast cancer journey thinking it would be fun to participate and feel pretty again.  When I got the call that I was one of the twenty-five chosen, I was so excited! I felt like I won the lottery! I felt that finally, my luck had turned and something good was about to happen.  The time seemed so right especially since I’d just finished a year of surgeries and treatment.

I have to admit, I didn’t know what to expect or how this was the real deal. I had no idea that my face would be in the national ad campaign for White House | Black Market and in store windows, catalogs and magazines. I never thought that my breast cancer diagnosis could turn so positive and I would be a part of the 25 women who “inspire.” I didn’t think my photo or diagnosis would lead me to be an LBBC ambassador letting women know that young women can and do get breast cancer.

When I spread the word that I had been selected, my friends and family who had been by my side the entire journey could not be more excited.  They all tuned in to The Early Show where we waved from the side and were interviewed by the weatherman. They could not wait to see the photos, watch the video and go shopping.  They went to their local stores and were sure to tell the staff that their friend was in the ad. I was amazed to hear from old friends that saw the ad and had no idea what I had been through.

As more people saw my photo and asked about my story, I felt that I was able to bring more awareness to women about breast cancer and the fact that it can happen at any age. You have to be on top of your health. I also hope that by sharing my story I was able to empower other survivors to share their story and continue to raise awareness about breast cancer.

I can’t thank WHBM’s president, Donna Noce, and WHBM enough. It was like a fairy tale dream come true from the moment I went to my local store to get outfitted for television to dancing the night away at The Butterfly Ball in my beautiful dress with the other chosen women by my side. It was one of the first times that year that cancer was not the first thing on my mind. It was an opportunity to celebrate ME.  It also brought some amazing women into my life that I would have otherwise never met. 

Here I am a year later: a year further out from my diagnosis and my hair twice as long!

To hear more about Jodi’s personal journey with breast cancer, visit our website for her short video on a young woman’s perspective of being diagnosed with breast cancer.

The Will to Live

This entry was written by one of our volunteers:

Back in 2003, when I was diagnosed with breast cancer, I was 31 years old and 34 weeks pregnant.  It was an absolute shock because I wasn’t aware of any history in my family.  I would come to learn that my great-grandmother on my father’s side was diagnosed but she was treated and went on to live a nice, long life. 

For three years after my successful treatment, I was a happy mother of a healthy little girl and looking to put cancer behind me.  That all changed in the fall of 2006 when my mother and sister were diagnosed with breast cancer within three months of each other.  Whereas in the past I had blown off genetic testing, I now recognized my family’s need to get genetic testing.   

Why get tested? 

The stakes were high. I have a little girl and my sister has two little girls. Carriers of the BRCA1 gene not only have high incidents of breast cancer, but ovarian cancer as well.  When my results came back positive part, of me was relieved. Now I knew why I got cancer in the first place.  But mostly, I was sad.  I met with a genetic counselor and we went through the testing process and possible repercussions with a fine-toothed comb.  My choice was to either carry on with my life while getting tested every six months or get a double mastectomy.  And because of the ovarian cancer risk, an oophorectomy (removal of the ovaries) was also on the table. 

I was so frustrated. I had completed my “cancer time” and I was trying so hard to move forward with my life.  I couldn’t get tested every six months.  It was hard enough thinking every ache and pain was a recurrence. Getting tested every six months would make me go insane with worry.  The removal of body parts seemed barbaric and incredibly invasive.  No more breasts?  No more ovaries?  It would be difficult to go ahead and relinquish the parts of my body I felt were essential to my womanhood. 

But in the end, what matters most is life.  I want to grow old with my husband and watch our children grow to be happy, healthy adults.  So in 2007, I had an oophorectomy and a double mastectomy with reconstruction.  In the end I am grateful that we have tests available to find out if one is a gene carrier.  Despite the fact I was given “choices,” when the test came back positive for the BRCA1 gene, I felt there was really no other choice than to have the surgeries. 

I want to live.  What good are your boobs and eggs if you aren’t living? 

Because of the testing I not only saved my own life, but also the lives of daughters, cousins, and nieces in the next generation.  I may not have all my physical parts anymore, but my heart is still there…beating loud and clear.

Did you decide to get genetic testing? Why/why not? Leave us a comment below or on Facebook letting us know what influenced your decision.

A Whole Lotta Love

This entry was written by Jayme Gittings, our Manager of Individual Giving:

Pink boas, cowboy hats and fuzzy bras.  Sexy swimsuits, brassy tee shirts and pajamas.  A whole lotta attitude and a whole lotta love.

That’s what I found at the 10th Annual Conference for Young Women Affected by Breast Cancer

This year was my first experience, but it was a milestone 10th anniversary for participants.  Coming from all corners of the country and across the world, over 800 women arrived to learn more about breast cancer, treatment options and ways to improve their own quality of life.  I was lucky enough to join the Living Beyond Breast Cancer team to support the conference and was blown away by the experience.

Each woman I met touched me in a different way.  The teenager who was diagnosed at 14 and found a community of women to embrace her.  The 73-year old who was diagnosed in the 1965 and feels it’s her job to come every year and “hand out hugs.”  The research scientist eager to discuss healthcare legislation with Rep. Debbie Wasserman Schultz.  The Canadian advocate who found a world of information and possibilities in the exhibit hall, many unavailable in her country.  The German native who powered through her most recent round of treatment to attend and find fellowship thousands of miles from home.  The New York specialty designer who left with a wealth of knowledge about how to best craft beautiful clothes for women with mastectomies.

I was awestruck.  No bouquet of wilting lilies, this group wanted real information, real help, real support…the real deal.  They grabbed hold of the chance to talk openly and freely about their concerns, hopes and fears surrounding their diagnosis.  In workshops, they asked probing and specific questions.  They spent the in between time meeting up at networking tables for groups like “advanced (metastatic) breast cancer” and “very young diagnosis.”  And they relaxed and socialized with hundreds of other women who knew exactly what it felt like to be a young woman affected by breast cancer.

The weekend was an emotional one for me.  I have not been diagnosed with breast cancer, but I have loved and cared for many who have.  My mother was diagnosed with a rare cancer at the age of 40, with two young children and a blossoming career, but without the support of a conference such as this.  As a witness to this collective force of women, I could only stand awestruck. 

I hesitate to use the word hope, because it is such an intangible concept, ephemeral almost.  Rather, I felt the power and strength of the women in those rooms.  It was palatable and concrete.  It was as real as every woman who walked proudly through registration looking for answers and compassionate support.

I was proud, too.  Proud to be a small part of such amazing work. 

Next year I will be front and center at the 11th Annual Conference. Will you?

Let us know what you thought of the conference by leaving a comment below or posting it on our Facebook page.

Stay tuned for photos from the event!

A Blessing in Disguise

This entry was written by Lesley Andrews, a breast cancer survivor and supporter of LBBC:

On August 25, 2003, I awoke groggy and disoriented from an excisional biopsy on my right breast. My husband was in tears. 

“I am so sorry, but it’s breast cancer.” 

I was 38 years old.  I was in total shock and felt that my whole world was caving in.  I was so healthy – how could my body have failed me?  Yet, not only was I forced to face my own mortality, I also had to deal with the possibility of a life without children.  I never dreamt that, not only would I survive cancer treatments, but I would become the mother of three children.  

Encountering Obstacles

In January 2003, after 1 ½ years of trying to carry a baby, I went through in vitro fertilization (“IVF”).  That cycle was successful, and I became pregnant with triplets!  I was excited, thrilled and terrified.  But, sadly, I lost all three at nine weeks into the pregnancy.  After a D&C and waiting for my body to heal for two months, I completed another IVF round.  It failed.  When my fertility nurse told me that my pregnancy test was negative, I called a close friend and said, “I feel like she just told me I had cancer.”  Little did I know, I actually did have cancer growing inside of me.

After many discussions with my husband, we decided to take a month off and try naturally.  I believe that decision helped save my life.  As I often did when I thought I might be pregnant, I felt my breasts during that month to see if they were tender.  That is when I found the lump.  It seemed to have grown overnight.

One Last Try

I had a unilateral mastectomy and axillary dissection in the fall of 2003.  Before I started chemotherapy, I told my oncologist I wanted to go through another IVF cycle.  I knew it was my last chance to create embryos.  Chemotherapy would likely severely damage my remaining eggs, and I was already having a difficult time conceiving.  My oncologist was hesitant due to the possible risks associated with increasing my estrogen during the in vitro cycle.  She suggested I see a specific fertility specialist in New York City who dealt with cancer patients.  Within a week or two, the doctor stimulated my ovaries with fertility medication while giving me a breast cancer drug – an aromatase inhibitor – to reduce the estrogen levels in my blood.  This IVF round resulted in four embryos which were immediately frozen. 

Because I was on Tamoxifen, I could not safely carry a baby due to the high risk of birth defects.  We found an amazing gestational carrier who agreed to carry our baby.  We used the frozen embryos from my first IVF cycle.  After initially starting with twins, one twin died at 8 weeks gestational age.  But Melina continued to grow in our gestational carrier’s womb and was born a healthy baby girl on May 31, 2005.   

Double the  Blessings

When Melina was two years old, my husband and I decided to use the remaining four embryos from the pre-chemo IVF cycle.   The gestational carrier who delivered Melina agreed to try again.  The fertility doctor told us that, due to the type of these embryos, the chance of pregnancy was only about 15 to 20 percent.  We went ahead anyway.  I had a plan B – using an egg donor or adopting. 

I never resorted to plan B. 

Not only did our carrier get pregnant, but she became pregnant with triplets! One of the triplets stopped growing at nine weeks gestational age, but we were so fortunate to have healthy, full-term twins – a boy, Ryan, and girl, Annabel – born on May 16, 2008.   

I still mourn the loss of not being able to carry my own babies.  My whole life I wanted to experience being pregnant.  Despite the loss of never giving birth, I cannot believe how many wonderful blessings have arisen.  I know I am so lucky.  But, sometimes, in the quiet of the night, I panic, thinking I might not be here for my young children.  Then, I listen to my inner wisdom, and know, for sure, that I will. 

Melina, Lesley, Ryan, Manny and Annabel