TNBC Aware: Understanding the Worry of TNBC During, After Treatment

March 3, 2013

 

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.

TNBC women must be closely monitored – seeing their oncologists every 3 months, with mammograms every 6 months. Careful monitoring includes things such as blood tests for white and red blood cell counts, feeling for lumps, and monitoring changes in energy level, unusual pain, respiratory and heart troubles, bone density loss, etc. Genetic testing is usually advised, and if the TNBC carrier is found BRCA+, there’s a likelihood the woman could pass the cancer on genetically, which I’ve also discussed.

There still isn’t a lot known about why some woman get TNBC. But suffice it to say, TNBC is still considered the “black sheep” when it comes to understanding cancer cells, and hence, the worry many women have.

Consider this – my friend has larger tumors, perhaps more than one, although they haven’t spread, and they are ER-positive and HER-positive. Her doctors suggest surgery, which she has, then 33 radiation treatments, and then oral chemo for 5-10 years. For me – 1 small tumor, surgery, chemo (which I loudly whined about for 18 months!), radiation, then walking on thin ice for 2-5 years. While I had no choice, I am grateful for doctors who understand the differences and the urgency that being triple-negative carries.

In the meantime – and this is what I counseled the women I speak with – live life to the max. DO NOT let your cancer control or define you. You may not be able to control your cancer, but you can control how you deal with it and at what level you entertain it. At times my cancer has played a premier role in my life, yet these days it’s an annoying cousin, a part of me that I acknowledge and then hurriedly pass by. I know, and am reminded daily (such as today when I receive a note in the mail saying it’s time for another mammogram), it will be a part of my life for quite some time. And yet – another mammogram or another doctor’s appointment are the ways I time my NED – toward that 5 year goal!

Happy TNBC Day and on toward NED Day!


Ronda is 54 years old. She was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She went through surgery, chemotherapy, and radiation. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She is using her recovery time to read, listen to music, garden, walk, play with her grandchildren, children, and enjoy her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures.

Follow our TNBC Aware blog series.

 

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