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.


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: 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

Hear My Voice: Remembering Us in October

SheilaJohnsonGloverSheila Johnson-Glover blogs about the importance of discussing breast cancer in the African-American community and recognizing people who are living with metastatic breast cancer.

When people hear I have stage IV breast cancer, I wonder if they automatically think I’m going to die. No one has ever said that to me, but I still wonder this sometimes. I am a stage IV breast cancer survivor, and I’m proud to say that, because after 5 years, I’m still striving and thriving. I want people to not immediately think of metastatic disease as a death sentence. I want people to understand I still fight just as hard as people with stage I, II or III breast cancer. And as long as researchers continue to develop new medicines, we still have HOPE.

I was diagnosed with HER2-positive breast cancer in September 2009 while I was still on active duty in the military. When my doctor told me I had stage IV cancer, I asked, “How many stages are there?” She said, “Sheila, you have the top one.” Is stage IV breast cancer really a death sentence? My answer would be NO.

Still, when I found out I had metastatic breast cancer, my first thought was to ask God, “Am I going to die?” As the years passed, there have been so many different targeted therapies that have been approved for treating HER2-positive metastatic breast cancer. The advances in medicine have had a huge impact on my survivorship: I’m currently on Herceptin and Faslodex, and these two medicines have been working amazingly for me. My mother died of stage IV breast cancer in August 2004, and I wish I would have known more about the disease then. I wish she had had the medicines that I’ve been on these past couple of years – maybe she would have lived longer.

I’ve met so many amazing women with metastatic breast cancer and their journeys are truly amazing, as amazing as anyone diagnosed with this disease. However, as an African-American stage IV breast cancer survivor, I haven’t met many other African-American women with this diagnosis. When my mother faced this disease, cancer was not talked about too much in our community. It goes to show that it’s a subject that needs to be addressed and discussed in the African-American community. For African-American women, our mortality rate from breast cancer is much higher than it is for any other races. We need to talk about it. Continue reading

Hear My Voice: The Silver Lining in the Malignancy

Susan RosenSusan Rosen writes about staying positive in spite of her diagnosis with metastatic breast cancer. 


When I was diagnosed with stage III breast cancer on August 10, 2010, I never questioned the diagnosis. I never asked, “Why me?” I would deal with the diagnosis and treatment and move forward.

Not this time.

In September 2013, my cancer metastasized to my bones, liver and dura (the outer covering of the brain). After more testing, a primary thyroid cancer was also discovered.

I went through a range of emotions. I was angry, I was mad. How could this happen to me when I took all the right precautions? My oncologist reassured me that I did all I could. It didn’t matter.

When my oncologist delivered my diagnosis, he brought up an image on a computer screen. It was the image of my body, all lit up. He looked sad. 
He said the cancer has spread. He was so sorry. My oncology nurse cried. I cried. My husband looked lost.

We then needed to tell our children. My daughter is 19, and a sophomore in college. My son is 15, and a sophomore in high school. It was not easy telling them last year, as they both adjusted to their freshman years. However, we have been sharing all news, good or bad, with our kids since the beginning of this journey.

Within a few weeks we all adjusted as well as we could to this devastating news. It was time to move forward, and begin treatment. I started chemotherapy right away. I felt weak and tired, but I did not lose my hair! I am now on hormonal therapy and a bone medicine.

I am feeling fine and handling my situation well… most days. I have my moments, especially when I think of my husband and kids.  Continue reading


crashRonda Walker Weaver continues her series for the LBBC blog by discussing the three major challenges she faced after being diagnosed with cancer: Rise, Surprise and Adventure. Here she discusses the surprises she faced including a more recent, non-cancer related surprise (photo)…

My life has been filled with surprises – those gifts that show up on my back porch, uninvited, asking to stay. I usually have to choices with surprises – accept in awe and learn, or reject with a whine, “That’s not what I wanted!”

Learning I had cancer came as a huge uninvited surprise. I was in shock for months and in some ways I am still shaking my head in disbelief. Nothing I’ve ever felt – surgeries, pregnancies, or illness could have prepared me for the assault on my body – from cancer. That’s where the surprise came – nothing, nothing prepared me for my treatments and the side-effects. But I quickly stopped my whining and began to see it as a gift filled with surprises – the beautiful surprises that were, still are, a part of my journey. The Surprise is in the Goodness that holds my hand along this journey. The goodness in knowing, and in not knowing –

Knowing I didn’t cause this, and I acted quickly – I am healthy, and my healthy choices made this process more simple than otherwise – no “wish I would have” for me.

Knowing I have insurance. As the bills are still rolling in, we hit our individual out-of-pocket max in one week, I am blessed with healthcare. I give to the roadside panhandlers, and I’ve joked that one day perhaps I’ll stand on the side of the road with a sign that says, “Need boob job,” to see how much money I can make. But medical care is a necessity of life, and I count my blessings.

Knowing I can trust those who are providing my medical care. This has been such a comfort – they have a proven track record, are the kindest folks, they are proactive, and they are happy to work with me and my requests. As well, I have friends who are circling around me to hold me up when I’m falling, to lay beside me when I am alone.

Knowing I have emotional and physical support. I am so blessed to have family and friends and colleagues who care about me – I have so little to give right now, and they are giving so much (two types of soup in the fridge, a loaf of homemade bread, and warm apple cake, e-mails, cards, messages, music, a book).

Knowing Scott (my husband) is devoted to me. Oh he is a good man, he serves me gently, lovingly, patiently. I vacillate between tears of gratitude and tears of frustration and pain, and Scott holds me close. He is my rock. Even with the death of his father during all of this, he stands strong.

Knowing there is a plan – there has to be a gold lining in all of this – and I am hyper-aware that I need to be learning and growing from my experiences, so they are not in vain. While I have counted down my treatment calendar, I have not wished this time away. Writing, as a way to sort things out has been great therapy for me. This really is an “age of miracles and wonder.”

Goodness also comes in the not knowing as well:

Not knowing who or where I’ll be nine months from now, or even tomorrow – that’s part of the adventure and risk I’m willing to take on this journey. It’s part of the surprise – it is the excitement, even in the thick of things.

Not knowing what the plan is – I don’t believe “God must really love you to give you this,” or “God only gives you what you can handle.” Nope, not gonna buy this, there’s too much pain and hatred in this world, and knowing these statements, well, that’s discounting agency, choice, beauty, reality. This is not the God I believe in.

Not knowing has forced me to live in the moment, and this is something I must learn – I must learn it is good to not know.


A week post radiation my husband and I bought ourselves a post-treatment gift – hybrid bicycles – for road and trail riding. We put them in our pickup and headed to Southern Utah for a week of rest and relaxation and riding. I have fallen into materialistic love with my bike, and I have enjoyed the freedom it allows me, and the knowledge that this exercise is goodness for my mind and spirit. Until . . . two weeks ago I crashed on my bike. My bike flew one way; I flew the other, landing on my left side, elbow first. I am writing this post with one hand. I had emergency surgery to reassemble my elbow. I have stress fractures in my wrist, my hand, and my right foot. I also have some nice bruises! Crashing is the surprise, the goodness comes in the knowing that heck, I’ve had cancer; I’m not going to let a boot and a cast ruin my happiness. But I am going to rest! And no more surprises – right now I prefer “knowing.”

Ronda is 54 years old, she eats right, exercises daily, and there is no history of cancer in her family, yet she was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She loves reading, listening to music, gardening, walking and riding her bike, traveling, and spending time with her grandchildren, children, and her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures. Be sure to check back soon for the 3rd installment of her story!

The staff at LBBC would like to wish Ronda a speedy recovery!

For more information about Living Beyond Breast Cancer please visit or like us on Facebook.

Give LBBC Your Feedback About Peggy Orenstein’s New York Times Article, “Our Feel-Good War on Cancer”

2012JeanSachsHeadshotVer2WebBy Jean A. Sachs, MSS, MLSP, Living Beyond Breast Cancer’s chief executive officer 

Journalist Peggy Orenstein ignited a debate when she explored the limits of mammography screening and the dangers of overtreatment for breast cancer in her New York Times Magazine article, “Our Feel-Good War on Cancer” (April 25, 2013).

For many in the breast cancer community, Ms. Orenstein’s observations come as no surprise. We know survival rates for women with metastatic disease have not changed, despite the widespread adoption of breast cancer screening. That women with ductal carcinoma in situ, or DCIS, often receive the same treatments as those with invasive disease—along with the related side effects and emotional distress. That more and more women choose prophylactic mastectomy after a diagnosis of DCIS or early-stage disease. And that our sisters with stage IV breast cancer remain silenced, isolated and underserved.

Still, the article introduced thousands of people to the realities of breast cancer today. As we talked about it at the LBBC office, we had many questions. How did this piece impact you and your loved ones? We want to know:

  • What is your perspective?
  • What questions does this article prompt for you?
  • What are your concerns for your health or well-being, based on what you learned?
  • Which issues deserve more discussion?

Based on your feedback, Living Beyond Breast Cancer will design a program to help further discussion. Please post your comments below, and our staff will review them.