Thoughts on Triple-Negative Breast Cancer: Natalie Gamble

We’re launching a three-part Q&A series beginning today, Triple-Negative Breast Cancer Awareness Day, featuring blog contributor Natalie Gamble. Learn more about TNBC during our live Web stream, Triple-Negative Breast Cancer 360: Waiting for the Future, taking place today, March 3 at 6 p.m. ET.

 

20160303 Natalie GambleLiving with triple-negative breast cancer sometimes feels like you’re walking on a tight rope. That’s at least how Natalie Gamble, 44, of Denver, Colorado describes her initial feelings after she finished chemotherapy.

Unlike estrogen receptor-positive breast cancer, progesterone receptor-positive breast cancer and HER2-positive disease, no targeted therapies exist for TNBC. Although chemotherapy has been shown to be the most effective treatment, people like Natalie sometimes feel overwhelmed dealing with the uncertainty and the lack of access to a targeted therapy.

“Once I finished chemotherapy, I felt like I was left to deal with these feelings by myself,” Natalie says. “Feelings you don’t necessarily have unless you have triple-negative breast cancer.”

In this Q&A with Digital Media Specialist Josh Fernandez, Natalie discusses fear of recurrence, support for TNBC and more.

Josh: Fear of recurrence is a significant concern for people with early-stage triple-negative breast cancer. How do you manage these fears in your day-to-day life?
Natalie:  Writing has been a big help. I write a lot – poetry, blog posts, short stories – to try to get my mind off this diagnosis. Meditation has also been a huge help. It keeps me calm and in a positive frame of mind.

I’m about to participate in a study through the Rocky Mountain Cancer Centers called “Valued Living for Survivors”. It’s a study where, with a group, you learn how to manage your feelings after completing treatment. I heard about it and thought dealing with this stress in a group forum would help.

Josh: Could you share with our readers some tips on how they can get support for TNBC?
Natalie: Different approaches work for different people. The Internet was really helpful to me, but you have to be careful – not all information is created equally. The information and stories I found on social media and the Web were sometimes very disheartening and scary.

When I was doing research and Googling, websites like LBBC.ORG and MyBCTeam were so helpful. MyBCTeam, which is like a breast cancer social media, let’s you tell your story to others affected by breast cancer. When I’m having a really bad day, I hop on and ask question, look for input from my peers or just vent about my day in an update.

Another activity that’s been helpful for me is therapeutic gardening with a bonsai tree. Denver Botanic Gardens and Rocky Mountain Cancer Centers offer a program for people with cancer, where you use sheers and gardening techniques to care for the tree and almost illustrate your cancer journey as you trim and shape the tree. At the end of the program, you get to take your tree home. And you’re with others who’ve experienced cancer, so you’re not alone.

Josh: On TNBC Awareness Day what are one or two important takeaways for readers to know about triple-negative breast cancer?
Natalie:
It’s not a death sentence. Someone living with this diagnosis is always going to have in the back of her mind that the cancer might come back one day. I have that thought from time-to-time.

If you’ve just finished treatment or are years beyond, try to reflect on how far you’ve come.  Hold on to good memories, anything that can help you believe you can overcome the fear. It’s not over just because there’s no targeted therapy. You can get through treatment, get through the fear. You can do it.

 

Watch Triple-Negative Breast Cancer 360: Waiting for the Future live at 6 p.m. ET


 

Natalie L. Gamble is a happily married mother of four and grandmother of one from Denver, Colorado. Diagnosed with triple negative breast cancer in May 2014, she spends most of her time writing short stories and poetry, or enjoying her role as a stay-at-home mother and grandmother.

The Whole You: Lessons Learned After Moving from Nurse to Patient

Best-selling author Hollye Jacobs, RN, MS, MSW, blogs about three lessons she learned after she was diagnosed with breast cancer. Join us for our Annual Fall Conference, part of Wellness Weekend in Denver, CO this September 18-20 to meet Ms. Jacobs, to hear her speak and get a free copy of The Silver Lining Companion Guide in your conference goodie bag at registration for the event. 

As a healthy, happy, vegan-eating, marathon-running, 39-year-old young mother with absolutely no family history of breast cancer, being diagnosed with the disease in 2010 literally shattered my world. As a health care professional, I very quickly moved from the side of the hospital bed into the hospital bed.  This transition from nurse to patient taught me profound life lessons.

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Lesson #1: Honor the feelings and let them out.

Prior to my experience with breast cancer, I was a grin-and-bear it kind of girl who was reluctant to share any feeling other than joy. However, once ‘Roid Rage (the intense feelings of anger brought on by pre-chemotherapy steroids) and Chemo-Sobby (tears at the drop of a hat brought on by the chemotherapy flowing through my veins), and the Freight Train of Fatigue (courtesy of the rads of radiation beamed into my body) entered my life, I had no choice but to let all of my feelings out. I was too exhausted to muster the energy to make them look “pretty.” And you know what? Expressing feelings, all feelings, happens to feel good. Really good. Though I no longer have ‘Roid Rage, Chemo-Sobby or the Freight Train of Fatigue (thank goodness!), I continue to openly express my feelings. And it still feels good! No, actually, it feels great! Continue reading

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