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. 

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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.

TNBC Aware: Raising the Voices of Those Left Behind — LBBC’s Triple-Negative Needs Assessment

LBBC’s Senior Director of Programs and Partnerships, Janine E. Guglielmino, MA, concludes our TNBC Aware series with this post about LBBC’s survey findings and the needs of women diagnosed with triple-negative breast cancer.

One morning several years ago, an LBBC colleague rapped on my office door. She was distressed. She had just spoken to a woman with triple-negative breast cancer, a term we had only recently started using after it appeared in scientific journals.

The caller was crying, despondent. She had gone online to learn more about her diagnosis, which websites described as “rare,” “aggressive,” and “difficult to treat.” Someone she trusted had asked her why she couldn’t “just take one of those drugs I keep hearing about on the news.” Why, the caller pressed, does it feel like there is nothing and nobody out there for me?

That call was not the first LBBC had received about triple-negative breast cancer, or TNBC, a subtype that does not respond to therapies targeting estrogen, progesterone or HER2 receptors. Almost daily, we heard from women who felt deeply anxious and worried about their future. Those with early-stage TNBC feared recurrence, while women with stage IV demanded research to expand their limited their treatment options. All clamored for more, better, evidence-based information that could guide them through diagnosis, treatment, and beyond.

It was clear LBBC needed to take action. We partnered with the Triple Negative Breast Cancer Foundation on a Guide to Understanding Triple-Negative Breast Cancer  and a two-part webinar series, held each April. We developed a website section on TNBC, posting subtype-specific research news and clinical trials. But we knew we needed to do more. We needed evidence we could share with anyone who serves people with TNBC.

So in 2012 we sought funding to conduct a comprehensive needs assessment of women with TNBC, modeled closely on LBBC’s previous studies for women with metastatic disease and premenopausal women. Working with researcher Kathleen Swiger, MPH, we recruited an executive committee of advocates and prominent clinical professionals with a research interest in TNBC. We interviewed seven healthcare providers and women about their experiences, and held focus groups in four regions.

We then designed an 80-question online survey, informed by these activities, to answer one key question: Do women with TNBC want education, information and support tailored to the cancer’s triple-negative status? Continue reading

TNBC Aware: Leaning Into the Wind

Blogger Anna Craig wrote this original post about living with stage IV triple-negative breast cancer for our TNBC Aware series. 
AnnaI am 38 years old and I have stage IV triple-negative breast cancer.  This is the bad kind of breast cancer that no one really talks about.  It is incurable and will ultimately take my life. Triple-negative breast cancer is defined by what it is missing. It is the left over breast cancers that do not have one of the three known receptors; estrogen, progesterone and HER2. More likely to occur in young adults, triple negative makes up 15% to 20% of all breast cancers.  We are a minority.

Living with metastatic breast cancer is like playing a game of Whack-A-Mole, where each person has a finite bag of mallets. When a metastasis shows up on a scan you try to whack it on the head with a mallet. Sometimes it works, sometimes it doesn’t.  When it doesn’t, you grab a new mallet and keep whacking until you run out. As you can imagine, the bigger your bag of mallets the more likely you are to extend your life. Unlike HER2- and hormone-positive breast cancer, triple negative does not yet have targeted treatments like Herceptin. My treatment options, outside of clinical trials, are limited to chemotherapy, surgery and radiation. This means my bag of mallets is much smaller.

Having metastatic breast cancer in your 30s is complicated. As with most young people my age, I am in the thick of my life. I have two small children and a budding career as an architect.  Until cancer, I was healthy, active and ambitious.  I had patiently begun to build my life. I had even started to discover things that inspire me to dream without limits.  My life was just starting to take flight, when in an instant, cancer happened and my world crashed at my feet.

I’ve always been a person who embraces the idea that life is a journey.  I pictured my career as a long twisting road of discovery.  My twenties and thirties would be about understanding how buildings work and how materials come together.  I would take time off to have a small family.  I would balance my career and my ambition with parenthood.  Life would be thick, active and vibrant.

In my forties and fifties, I would start to come into my own.  I would create a body of work that was imaginative and inspiring. My buildings would have spaces full of light, texture and meaning.  In my sixties and seventies, I would travel the world and work on a few special projects. My buildings would reflect my wisdom and grace.  I would be an eccentric old architect with lots of grey hair, wrinkles, colourful socks and brightly patterned clothing.

Triple-negative breast cancer with its never ending toxic cycles of chemo derailed that life. Instead of balancing my career with my family, I have spent days and weeks in bed. Cancer can be very isolating.  Sometime I get so trapped in my illness and my discomfort that I struggle to relate to the people around me.  The more time I spend in bed, the more my dreams and passions drift away. Often I feel very alone, vulnerable and angry.  Continue reading

TNBC Aware: How Being Diagnosed With Triple-Negative Breast Cancer Connected Me To My Roots

Speaker and Integrative Cancer Care and Wellness Coach Eileen Fuentes on how triple-negative breast cancer connected her to her cultural roots. Eileen also included a recipe below!

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Wellness and healthy living has become very trendy. It seems as if everyone is sipping on smoothies and doing yoga. While I have always been health-conscious, the messages I was receiving in the media confused me about what to eat and how to live. Like many women, I thought low-fat anything, artificial sweeteners, and highly processed foods were good for me.

It wasn’t until I was diagnosed with triple negative breast cancer (TNBC) at 34 years old that I made it a point to really understand how to eat and live in order to reduce my risk of recurrence. What makes TNBC unique is that there are no targeted therapies to treat it and it has a poorer prognosis as compared to other breast cancer subtypes. While I’d agree with you that this cancer is definitely “negative”, the name actually refers to the fact that the cancer is estrogen receptor negative (ER-), progesterone receptor negative (ER-), and HER2/neu negative. This disease also disproportionally affects premenopausal women and those of African-American and Latino heritage.

The fact that I fit into both categories and had no family history motivated me to look closer at what I could do given my limited medical options. Below are 5 lifestyle changes that I made that were beneficial:

  1. No matter how I felt, I always exercised regularly including simple movements like walking or more vigorous activities like qigong.
  2. I began my spiritual journey to learn more about myself, my purpose, and to seek guidance on my post-cancer life.
  3. I maintained a journal, which later turned into a newsletter for my loved ones, and ultimately a blog.
  4. I stopped using toxic products on my body and reduced the toxic thoughts I allowed to entire my mind.
  5. I used to food to reduce the side-effects of cancer treatment and to connect me to family/caregivers.

Continue reading

TNBC Aware: Getting Past the First Two Months After Diagnosis

Julie Wolfe blogs about the emotional impact of her diagnosis, learning about triple-negative disease and genetic testing, and beginning chemotherapy for triple-negative breast cancer.

 

 

Julie Wolfe_FINALIt is amazing how important dates stay in your mind. They become part of your narrative, your story.  If you hear the story of my diagnosis without the dates, it does not convey the level of intensity.  And I am a really intense person.

On Friday morning, December 27, 2013, I had a mammogram and was asked to stay for an ultrasound.  As a really big busted 40-something woman, this was not uncommon. What was originally a relaxed ultrasound jumped into high gear.  There was something wrong, I needed a biopsy.  “Ok, let’s go!” I said.  But I couldn’t have the biopsy without consulting with a breast surgeon. I was told to come back the following Monday at 8:30 a.m.

My plan was to do the biopsy alone. As my husband took radiographic images for a living, he understood better than I did how bad this could be. By the time I told him about the biopsy he could not take off work on Monday morning.  Maybe retail therapy with my visiting sister, a cancer survivor herself, would keep my mind off of it.  Nope. Several hours later, at the end of shopping, I say, “By the way…” but she knows the tone and has had the worry.  Without discussion, she decided she’d come with me for the procedure.  Before the end of the weekend, half my family knew, but not my two other living siblings, my parents, or my stepson.

On Monday, December 30, I had the biopsy and it was official, I knew I had CANCER.  Not what type; that would come later. With the holiday and a big storm rolling in, I convinced my doctor to expedite the test results.  It was January 7, 2014 at 4:55 p.m. before I finally found out what type of breast cancer I had. It was a quick conversation over the phone with no additional information.

After the biopsy I had no choice but to tell my parents and most of the immediate family.  But I didn’t want to scare my parents too much so my husband, sister, and I went together to tell them.  It was very reminiscent of the January day 2 years earlier when all the siblings and spouses went to tell them their son, my brother, had died. The next night, New Year’s Eve, my husband and I stayed in.  He was so stressed and worried that he went to bed at 9 p.m.  I stayed up, hugged my dogs, and cried.  When family and friends texted my Happy New Year messages, I texted back with smiley faces and wishes for a happy year, never letting on about the worry and anguish I felt.  I wanted so much to tell them all but did not want to ruin their nights with something they could do nothing about. Without a doubt it was one of the worst nights of my life.

Based on the advice of my doctor and the desire to stay as sane and calm as possible, from December 30 which was my diagnosis of cancer to January 7 when I found out I had triple negative breast cancer, I decided to do no research.  There was, and is, an unbelievable amount of information online, much of it depressing.  When I started to research I made the decision to only visit web sites that ended in .org. And at the beginning I did not read blogs or comments, only information from reputable sources.

The very first site I visited to find out about triple-negative breast cancer was www.nationalbreastcancer.org. The site had a very easy to understand graphic and description of TNBC. It was also terrifying.  As an overachiever with a sense of humor, I read the site and thought to myself, “Of course I have an aggressive and difficult to treat cancer.”

The first few pieces of relevant information I read are the ones that have become fixed in my mind: TNBC is a very aggressive, fast moving, and difficult cancer; of all the breast cancers it had the lowest 5-year survival rate at 77 percent. Since I was young and of Ashkenazi background it could mean I had the BRAC 1 or BRAC2 gene mutation. Continue reading

TNBC Aware: Understanding the Worry of TNBC During, After Treatment

For our TNBC Aware series, Helpline volunteer and LBBC blogger Ronda Walker Weaver discusses her experience coping with and understanding a TNBC diagnosis.

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I have been a volunteer for LBBC’s Breast Cancer Helpline for about 18 months.

Interestingly, I often receive calls from women who have triple-negative breast cancer. Typically they are scared – lots of negative stories about TNBC, and they wonder what is ahead of them as far as treatment and survival.

Triple-negative breast cancer can seem like a life-sentence to many women. The triple-negative means our cancer is not responsive to “typical” breast cancer treatments that target other subtypes.(Although, really, what is typical? – all women should have individualized treatment plans.) The biggest, most generic difference is that other breast cancers are hormone- or HER2-positive. So in addition to treatment like surgery, radiation and chemo, women with these types of breast cancer receive some type of therapy that targets the hormone or protein growth (this may be taken daily for 5-10 years). TNBC is not hormone or protein responsive, so we usually have some combination of surgery, radiation and chemo, regardless of the size of our tumor, and that is it – we have one chance at killing our aggressive cancer rather than a prolonged chance. Typically if TNBC doesn’t not reoccur in 2-5 years, we’re considered NED (no evidence of disease), but those first 5 years are filled with careful monitoring/screening and fear. Continue reading

TNBC Aware: Meaningful Action in Honor of Her Shero

Triple Step Toward the Cure founder and CEO Lori Flowers contributed this TNBC Aware blog post about her late sister, Sheryl, who inspired her to start the triple-negative breast cancer nonprofit to educate, encourage, and empower women diagnosed with the disease.

Sheryl (right) with her sister, Triple Step Toward the Cure founder and CEO, Lori Flowers (left).

Sheryl (left) with her sister, Triple Step Toward the Cure founder and CEO, Lori Flowers (right).

Cancer does not run in my family.  But general health and longevity do. Both sets of my great-grandmothers lived to be almost 100 and were largely independent even into their last days. My grandmother is 97 and sharper than many half her age and both she and my mother look younger than their years. I always attributed this to our Caribbean heritage.  So naturally I expected that genetics along with the salsa dancing and the patacones we grew up eating would help carry my sister, Sheryl, and I into ripe-old age.  However, that legacy was not enough to protect my beautiful and brilliant sister who was diagnosed with triple negative breast cancer in January 2008 at age 40.

I had no idea what was required of me but I immediately went into action mode, and assumed a role that was a constant mix of caregiver, therapist, comedian, and cheerleader.  Despite the circumstances, there were many wonderful moments and lessons learned.  As the eternal “little sister,” I now had an opportunity to step up for my shero. Continue reading