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!

Eileen-Z.-Fuentes_Headshot1

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.

RondaWalker-27

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

TNBC Aware: Moving Forward After a Triple-Negative Metastatic Diagnosis

Cheryl Solomen writes about understanding her diagnosis, maintaining her routine and doing the activities she enjoys while living with triple-negative metastatic breast cancer.

 

I was diagnosed with triple-negative metastatic breast cancer in October 2012.

I was visiting with my daughter in Florida with my fiancé in September. While showering, I felt a mass in my left breast – it was hard and I was terrified.

When I got back home I called my primary care doctor and went to see her. During the appointment, she said she didn’t think it was anything to worry about. With that I was supposed to be appeased, but I wasn’t – I knew something was wrong. I insisted that I wanted a script for a mammogram and ultrasound. I went for these tests the same day and the radiology technician said preliminarily that the lump looked abnormal – the technician suggested I see a specialist.  I went back to the doctors very upset. I saw another doctor and he referred me to a breast specialist whom I saw the next day.

The specialist was wonderful and comforting and insisted it was early and “we caught it.”  “How do you know that?” I asked.  I wanted to make sure.   I semi-digested the news and was ready to begin my treatment plan. Then I learned that my PET scan showed the breast cancer had metastasized to my lymph glands and liver.  I didn’t even know what that word metastasized meant or what any of this meant. Tests also revealed that I was diagnosed with triple-negative disease. Another term I had never heard. That was scary. Continue reading

TNBC Aware: From TNBC Diagnosis to TNBC Champion

Roxanne Martinez contributed this blog post for TNBC Aware. She reflects on her experience from getting diagnosed after learning she was pregnant, to becoming a triple-negative breast cancer advocate.

 

OLYMPUS DIGITAL CAMERATriple-negative breast cancer. I was devastated to receive the diagnosis in November 2010, shortly after learning I was pregnant. My entire life flipped upside down.

With a rollercoaster of emotions, I turned to the Internet to learn everything I could about the disease. None of what I read was encouraging about triple-negative breast cancer – the particularly aggressive type that is more likely to recur than other subtypes of breast cancer.

Prior to my diagnosis, I didn’t even realize that there were different types of breast cancer. With no family history of the disease, I was left to navigate the unknown and forced to become my own health advocate. Fortunately, I found online resources and support networks, such as the Triple Negative Breast Cancer Foundation and Living Beyond Breast Cancer, that connected me with other women battling the disease.

I knew I had found the right medical team to treat my breast cancer when I shared my intent to carry out the pregnancy and my oncologist informed me that there were options to do so. Timing would be everything in my case. Based on the size, grade and aggressiveness of my tumor, my medical team recommended a treatment plan that included an immediate mastectomy, followed by chemotherapy — all while pregnant.  I would begin chemotherapy during my second trimester, when research has shown to be safe for an unborn child.

After much research, soul-searching and prayer, I proceeded with treatment. Though it was a rough pregnancy, my baby’s resilience, along with fellow cancer survivors and a nationwide support network nicknamed Team Roxy, kept me going strong and inspired me through my journey.

The physical side effects of treatment were only part of the battle. Coping with breast cancer while pregnant made me an emotional wreck. There was absolutely nothing any doctor could tell me that would alleviate my fears. I wouldn’t be at ease until I could physically see and hold my baby. That time would come sooner than I imagined. Continue reading

TNBC Aware: Giving Back to Others Living with Triple-Negative Breast Cancer

The second post for TNBC Aware is written by Melissa Paskvan. Melissa discusses how she coped with diagnosis and treatment, what it was like adjusting to her “new normal” and how she gives back to others with TNBC.

MelissaPaskvan

My name is Melissa Stukenborg Paskvan. I’ve been married for over 22 years to my high school sweetheart and our son just turned 13 years old.  I am very involved in the breast cancer community here locally as well with social media with sharing information and reaching out to women in their fight with triple-negative breast cancer. I also like to travel to meet several of my TNBC sisters.

My breast cancer experience began in August 2009. My husband and son had just left for vacation when I found my lump by chance. I felt something along my bra band line under my breast and my heart sunk. I was in disbelief that my worst fear was now happening to me. I reacted fast and two days later I got in for a mammogram followed by an ultrasound. My 2 cm lump did not show up on the mammogram images because I had dense breast tissues. It was thought to be just a cyst but I insisted on a needle biopsy right then and there.

Another two days went by, and I received the call from my doctor. I was 41 and diagnosed with cancer… I was numb. I never cried, I wasn’t angry but I was really scared, scared of the unknown. Suddenly, nothing else mattered, I couldn’t see pass “today”. Can you imagine all the fear racing through my head and trying to keep myself together, especially since my husand and I did yet tell our son?

Two long weeks later, I met with my surgeon who told me that I have a rare and aggressive form of cancer that doesn’t respond to hormone therapy. My surgeon told me that my tumor was invasive ductal carcinoma with negative receptors for estrogen, progesterone and HER2 but, she didn’t use the term, triple-negative breast cancer.  It wasn’t until I met my oncologist a month later that I learned my cancer was actually referred to as triple-negative breast cancer, when she told me that my cancer was aggressive and we’re going to be just as aggressive fighting it with dose dense chemo every other week.

I turned to the internet to learn more about this tumor of mine, and I was really frightened with what I read about its aggressiveness. So little was known about this disease 5 years ago. What I learned left me feeling defeated before my battle even started. Continue reading