Offering Support for the Newly Diagnosed: Tips for People Who’ve Been There

New LBBC blogger Joanne Hampton posts tips for offering the best possible peer support for people newly diagnosed with breast cancer.

joanne hampton photoMy journey has consisted of nine surgeries, chemotherapy, radiation, and a positive diagnosis of BRCA1. I am an 11 year survivor. I have spoken at numerous events, sat on different committees, ran many successful fundraisers, and yet, I still feel awkward talking to someone who is newly diagnosed. They look up at me like I am about to reveal some great secret advice to get them through this. Tears begin to form in their eyes they ask me questions like “What now?”

Even though I, too, am a breast cancer survivor and have traveled a similar path, I don’t always know what to say. Because of this I was inspired to do some research for myself and other breast cancer survivors who want to offer that glimmer of light at the end of the tunnel for someone recently diagnosed.

I want to focus on some tips to think about when you are asked to speak to someone who is diagnosed with cancer. So that you can make it easier by giving them strength, make a difference by inspiring, and help by holding a hand.

Tip #1: Each person’s reaction is different.

This is very important. I can’t stress this enough. The most miniscule thing to one could be earth shattering to another. To me, losing my hair was the least of my worries. But, I have met a lot of women who were devastated and felt they had lost their dignity along with their hair. A person can’t always help or control how they feel. There’s no rhyme or reason, there’s no right or wrong but, they are real feelings and people will react differently, based on those feelings. Not all wounds are so obvious. Walk gently in her life.

Tip #2: It is not all about you and your journey or the journeys of others.

Be sensitive to her journey. Make sure you do not compare. Try and avoid saying things such as, “I know how you feel,” or “I know how hard it can be”. She needs to be herself and take her own journey. The secret is changing saying “I know” to “I understand”… because to an extent you do. As for comparing, most of the time people don’t even know they’re doing it. We don’t want her to feel bad if she isn’t living up to the expectation she sets for herself based on your experience. Continue reading

Word Associations: Breaking the Bonds between “Palliative Care” and “Hospice”

Don S. Dizon, MD, FACP, regularly blogs on ASCO Connection, where this post originally appeared. Meet Dr. Dizon at our Ninth Annual Conference for Women Living with Metastatic Breast Cancer in Philadelphia, PA.

dizon_don 2012Mom. Dad.

Happy. Sad.

Friend. Trust.

I remember playing this game. A friend would say one thing, and then I would say the first thing that came to my mind. For some reason, it would pass the time. I remember how some words would spark an emotion or a memory. Sometimes happy, sometimes not so happy. But, playing that game was one of the first ways I learned the power of words.

I started thinking about this one day when a group of colleagues were discussing palliative care. Despite how we all believed in the benefits of palliative care, we each recalled experiences where the mere mention of those words to a patient caused them to become defensive, even angry.

“I remember taking care of an older woman,” someone had said. “She was on her fourth line of treatment for metastatic breast cancer, and her scan had showed some progression. She had been having issues with pain as well, and we had to adjust her medications several times in the past month. I mentioned that she would benefit from palliative care, and I was surprised about how upset this made her. She accused me of giving up on her, telling her she was dying. It was really upsetting.”

Hearing that story made me more convinced that the associations of palliative care have not evolved, even as the evidence that palliative care benefits patients far before they are deemed terminal has accumulated. It made me think, perhaps the way to increase utilization of this service is to sever the “palliative care means hospice” connection. Yet, how to do that? Continue reading

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

Changing The Way I Viewed Stage IV: How I Learned I’m Not Alone

Sheila Johnson-Glover is back on the LBBC blog to talk about the Annual Conference for Women Living with Metastatic Breast Cancer, how it changed the way she saw her diagnosis and connected her with a community of support. Learn about our Ninth Annual Conference for Women Living with Metastatic Breast Cancer, taking place April 11-12, 2015 in Philadelphia.

SheilaJohnsonGlover

Motivating, exciting, empowering, community building, love, strength, laughter and unity – these are the words that describe how I felt during and after I attended my first Annual Conference for Women Living with Metastatic Breast Cancer. For me, this conference was a game changer on how I viewed my diagnosis. The event gave me a new hope and a new beginning. I determined then that I would fight and continue to fight and to encourage other’s to attend this conference so they too can make lifelong friendships and get all the updates on research, treatment and support for people living with a stage IV breast cancer diagnosis.

I was diagnosed with HER2-positive metastatic breast cancer in December 2009. I had to ask my doctor, “Well how many stages are there?” My doctor responded, “Sheila you have the worst one.” As you can imagine, my heart felt like it had exploded and my whole body went numb. I needed to know more about metastatic breast cancer and meet women like myself who were living with this diagnosis, and learn if they felt the same way I did emotionally and physically. I was a total wreck when I learned I had stage IV breast cancer. I knew nothing about stage IV and I didn’t have anyone I could relate to.

Living Beyond Breast Cancer has been a true blessing in my life. I was introduced to LBBC by my support group, the Young Women’s Breast Cancer Program in St Louis, Missouri, and what a joy it’s been! I soon learned about the amazing conferences LBBC hosted, and I thought attending one would be a great opportunity to meet those who understood the same battle that I faced every day. I wanted to ask other people living with stage IV breast cancer questions like how they deal with side effects and what questions I should ask my oncologist. I would later learn that every cancer treatment plan is different but still, I needed to hear from others who understood what I was going through.  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. 

IMG_3219

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