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.

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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

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: 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

I Wasn’t Broken or Fragile…I Just Had Cancer

20141011_123702Today, LBBC blogger and friend Natalie is here to share what it was like for her to hear the words “You have breast cancer” and how her and her family reacted.

My name is Natalie Gamble, I am 43 years old and in May of 2014 one phone call changed my life forever. ” Your biopsy came back positive, Natalie I’m so sorry but you have cancer.” Cancer? My first reaction of course was tears. I cried in my husband’s arms afraid of the unknown because while an enlarged lymph node was positive for cancer my mammogram and ultrasound had shown nothing but benign cysts. My first thoughts after my crying jag were: “The Devil is a Lie!” Cue my second reaction, I got mad, I mean fighting mad and decided right then and there no matter what I was faced with I was going to fight and I was going to win. The next few days were a blur of appointments, procedures and tests I never even knew existed. After it was all said and done I was diagnosed with Triple Negative Breast Cancer, Stage II. Continue reading

Growing Initiatives for Metastatic Disease and LGB People Diagnosed with Breast Cancer

Catherine-Ormerod 1Catherine L. Ormerod, MSS, MLSP, LBBC’s Vice President of Programs and Partnerships, blogs about new resources and programs we developed for people living with metastatic breast cancer and LGB people affected by the disease.

This month, LBBC introduces two new initiatives to provide our brand of trusted information and support to two underserved populations in the breast cancer community: people living with metastatic breast cancer (MBC) and lesbian, gay and bisexual people diagnosed with breast cancer.

LBBC’s Hear My Voice Outreach Program will train 25 individuals from around the country and who are living with metastatic disease to connect others with resources, information and support for coping with stage IV breast cancer. Original LBBC research, confirmed by subsequent surveys, revealed that those living with MBC feel isolated, misunderstood and often unaware of programs and resources tailored to their experience. Other studies show that participation in peer outreach programs improves emotional health and well-being.

I see the power of connection at every one of LBBC’s conferences and thus I am very excited to begin the Hear My Voice Outreach Program at LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in April. We have already received many applications for the first Hear My Voice, so we know we have tapped into a large, unmet need.

Our second initiative centers on original content we developed to assist lesbian, gay and bisexual people living with breast cancer get the quality of care they need and deserve. For many, coming out to members of their healthcare team can be difficult or scary. The guide, which is the first of its kind for people with breast cancer, provides information, support and resources to help make having these conversations easier. Continue reading

My Fear of Breast Cancer Recurrence (A Poem)

EliseBourneBusbyThe fear of recurrence, or fear of cancer coming back, is one of the most common worries among people affected by breast cancer. Elise Bourne-Busby, EdD, wrote this poem about her own fear of recurrence in anticipation of our free January webinar on this topic.

The fear that cancer may invade my body again
Keeps recurring daily in my brain,
I must change my habits, if I want to stay healthy
Good health is not cheap, I must re-assign my money,
Good nutrition first, eat only the best
Fresh fruits and vegetables, get plenty of rest,
No candy and soda, drink water every day
I am what I eat, and for this I must pay,
My immune system is the core of my being
My body is designed to do the Self–Healing,
I must treat my body kindly, I must help the process
Exercise a little more, eat a little less,
My doctors will treat me, but I must keep the appointment
Get frequent health checks, even though inconvenient,
I must not be scared to ask my doctors any question
They are the experts, I pay for this information,
I must not be afraid to say I don’t understand
I must always, always get a second opinion,
I need my health, so I must remember
To ask my doctors for my health numbers,
Show me my glucose, cholesterol and blood pressure
And when I go home I’ll take my waist measure,
My good health is not only important, it’s mandatory
I must fire my doctors if necessary,
But I am not perfect, I do not always rest
Sometimes I eat junk food, and make my life a mess,
So I have to stay strong, and talk to myself daily
Nurture the core of my being, to balance spirit, mind and body,
I must invest in good health, fear is not an option
I must take care of me, that’s the only solution.

Elise Bourne-Busby, EdD, is a 15-year breast cancer survivor, and is a Reach to Recovery volunteer for the American Cancer Society. She is one of the founding members and chairperson of the group More Than Friends, which gives Sharing and Caring baskets to cancer patients undergoing treatment, provides transportation, makes home and hospital visits and assists the uninsured and under-insured with information to solve medication needs and financial issues.

The fear of recurrence doesn’t have to run your life. Join us on Thursday, January 29, at noon ET, for our fear of reccurence webinar, to learn about practical tools to help you manage your fears.

Living with Breast Cancer: Access the Health Insurance You Deserve

Anne-FilipicThe open enrollment period for the Health Insurance Marketplace began last month and goes until February 15, 2015. In this guest post, Anne Filipic, President of Enroll America, blogs about the changes in health insurance in the last few years and how they impact women affected by breast cancer. 

 

Until recently, pre-existing conditions have kept many women from getting the health insurance necessary to diagnose and treat their illness. So, at a time when they needed health insurance to help save their lives, many were left facing the full cost of hefty medical bills on their own. With hundreds of thousands of dollars in doctor visits, tests, medication, and more, it’s a cost that many couldn’t afford.

As a cancer survivor, you may have been turned down or charged more for health insurance in the past. But now, that is no longer an issue. Having a pre-existing condition can no longer prevent you from getting quality, affordable coverage. And you can’t be charged more for health insurance because of your medical history. This is true even if you’ve previously been turned down or charged more for coverage due to a pre-existing condition.

Now, hundreds of thousands of women who are fighting breast cancer have access to the life-saving medical care they need. In addition, preventive care for key services is now free, such as breast cancer genetic test counseling (BRCA) for women at higher risk for breast cancer, mammograms every one to two years for women over age 40, and breast cancer chemoprevention counseling for women at higher risk.  Continue reading