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

TNBC Aware: Education and Support Through Virtual Community

Today, March 3, marks Triple-Negative Breast Awareness Day. LBBC is marking the day with a Twitter Chat and an . Jennifer Stringer Staggs kicks of our series with a post about being newly diagnosed with triple-negative breast cancer, worrying about her daughter and sister, and finding support and community online. 

 

When my provider told me that I had triple-negative breast cancer, I was overwhelmed. Before learning my diagnosis, I Googled the different kinds and triple negative scared me the most. I read a lot about this type of breast cancer, and was told a lot of things that scared me. For example, I heard that if I had triple-negative that my chances of survival would be less than if it was hormone-sensitive, and that there was more of a chance it was genetic and could be passed on to my children.

My provider gave me a lot of information, but I found the best information going on Facebook and finding breast cancer forums. Diagnosed at age 29, I did not want to go to a local support group that had a huge age gap. It was a lot easier for me to get information and support online because everyone there either wanted the same information or already went through it. It felt more like a sisterhood in the forums. Nobody judged the questions I had and they were able to tell me what to expect from the treatments I was about to receive.

I got some of the best information going to Living Beyond Breast Cancer’s Fall Conference. I listened to professionals explain what triple-negative meant and what kind of treatments and side effects to expect. They also had an expert speaking about young women going through all of this and what to expect from “chemopause” and changes in your sex drive. I learned so much information there that none of my doctors covered.

Having triple-negative breast cancer made me very concerned for my daughter and my sisters and their kids. I worry they could still get cancer, even though I tested negative for the BRCA gene. I don’t want any of them to have to go through what I have had to endure. Continue reading

Everyone Deserves Quality Health Care: On Writing “Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person”

Josh_blog photoWriter and Web Content Coordinator Josh Fernandez writes about authoring Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person, and why creating this resource was important to him and LBBC.

I came out to my primary care doctor when I was 16 years old.

I had come out to a few close friends in the weeks before, and they didn’t handle it well. After that, my anxiety gradually increased. I had been meaning to make a doctor’s appointment for other reasons, so this anxiety pushed me to schedule a visit.

There were words before and after “I’m gay,” but I couldn’t help but focus on those two. After I said them, my stomach and chest felt as if they twisted into knots. My doctor’s face didn’t change; she maintained her relaxed facial expression and asked me questions about the anxiety I had. We then talked about what was going on. Before the end of the appointment, she told me not to hesitate to contact her if I had other questions or concerns, or if I needed someone to talk to.

My doctor was affirming, which was something I really needed at that time. That’s not always the case. Among the different barriers and disparities lesbian, gay, bisexual and transgender people face when seeking health care, getting quality care that’s sensitive is a major one. Forms in the doctor’s office or a hospital sometimes offer very limited ways to describe your relationship or gender identity. Providers may make assumptions. Biases may directly or indirectly impact a provider’s approach to care.

This is why it was important to me to write Breast Cancer inFocus: Getting the Care You Need as a Lesbian, Gay or Bisexual Person for Living Beyond Breast Cancer. There are advocacy organizations and other institutions working hard to educate, inform and train healthcare professionals on adequate care for LGBT people. Things are improving – just look at the Healthcare Equality Index – but there is still much work to be done. LGBT people with breast cancer cannot afford to wait for this work to be finished before receiving care. I wanted to create a resource that could empower and help LGBT people while that systemic work continues. I also wanted this publication and related online content to include personal stories of LGBT people affected by breast cancer, so that readers know they’re not alone. 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

Hear My Voice: ‘You Beat it by How You Live’

Norma Pitzer KellyOn Super Bowl Sunday, The NFL Countdown crew aired a tribute to late ESPN anchor Stuart Scott, who passed away last month from cancer of the appendix. Hear My Voice blogger Norma Pitzer-Kelly writes about the sports anchor’s decision to share his cancer experience with the public, and how his words can guide those living with stage IV breast cancer.

Stuart Scott died on January 4th, 2015. If you aren’t into sports or have friends and family who watch Sports Center on ESPN, you may have no idea who he is. Stuart was a sportscaster and host on that show. He was a pioneer in sports broadcasting and was well loved by professional athletes, celebrities, co-workers and friends.  He was also a cancer patient.

Stuart fought this disease for 7 years. It started in 2007 with an emergency appendectomy which turned out to be cancer of the appendix. Did you even think cancer of the appendix was a thing? I didn’t. Cancer is an insidious monster and it will attack you anywhere – I know that, and yet I didn’t think about the appendix as being susceptible. I was introduced to Stuart while watching Good Morning America anchor Robin Roberts interviewed him last spring.  During that interview, he told the story of his diagnosis, talked about his daughters and his refusal to give up hope.

Stuart was a devoted and loving father, he was an icon in the sports community, and his style and catch phrases will live on, but he, unfortunately, will not. After fighting like a champion with strength, grace and a quiet dignity the monster took his life, and those daughters he was so devoted to will have to live the rest of their lives without him.

I didn’t know Stuart personally, of course. I can’t even say I watched his show on ESPN – I didn’t.  But after following his journey with cancer, I feel sadness at his loss, as if he had been a friend. Having cancer gives you membership into a club you never wanted to join and camaraderie with other “members” that make you feel like old friends even if you’ve never met. As a metastatic breast cancer patient, I have felt this connection to others first hand many times over. Continue reading