Tuesday, March 4, 2014

Helpline -

I have been a volunteer for the Living Beyond Breast Cancer Helpline for about 6 months. I usually serve on Mondays from 11am-3pm.

Interestingly, yesterday I had 4 calls from women who have Triple Negative Breast Cancer, and yesterday was TNBC Awareness Day.

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, although, really, what is typical - all women should have individualized treatment plans. The biggest, most generic difference is that most breast cancers are hormone and protein positive, so often chemo isn't needed, rather surgery, radiation, and sometimes an oral chemo pill which is usually taken daily for 5-10 years. TNBC is not hormone or protein responsive, so we usually have 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.

What this means is that women with TNBC usually do not have to worry about prolonged treatment, they do have to undergo chemo, of which I've loudly whined about for 18 months! 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 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 a woman would have one type of breast cancer cell and not another, and why a woman can carry both + and - cells at the same time. 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 E+R+HER+. Her doctors suggest surgery, which she has, then 33 radiation treatments, and then oral chemo for 5-10 years. Or me - 1 small tumor, surgery, chemo, radiation, then walking on thin ice for 2-5 years. Hmmmm - pick your poison!

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 - 18 months to go toward that 5 year goal!

Happy moving past TNBC Day and on toward NED Day!

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