Kay

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Here’s my story: Athlete and health-freak, age 52. Voracious student of breast cancer due to a friend’s IIIB dx five years ago.

May 6, 2013: abnormal digital mammogram. Clustered micros. 2nd opinion agrees.

Biopsy May 16. DCIS (low/intermediate grade, non-comedo/necrosis.) Not as frightening a dx as it would be had I not read so much already on the subject. Still, great concern over receiving over-treatment because of current science’s apparent inability to determine whether my DCIS would evolve into invasive cancer. Aware that lumpectomies find higher grade lesions (about 1/5th of the time), lumpectomy was scheduled. Meantime detox and diet/workout upgrades to affect outcome, or at least healing.

June 12: lumpectomy (wide excision.) Size: 6mm. Margins: >1cm. Grade: low only.

Now: to radiate or not? Drug therapy or not? Even more fervent study reveals that science in fact IS adequate now to stratify at least some DCIS that is low-risk and less likely to benefit from (traditional) adjuvant therapy. I memorized several BCT (breast conservation therapy) only recurrence studies. I discovered tumor sample molecular markers which could predict that particular lesion’s ability to “upgrade” to something more dangerous.

I brought both to my oncologist. He and I pored over the studies and assessed my individual rate at about 5% at 5 years. As radiotherapy offers 50% reduction, this would bring me down only 2.5%. Nice but not worth RT risks. If saving my life were the goal, it may be different. But patients have more to consider than DCIS (unlike their oncs.) They must also protect their hearts, lungs, thyroids, etc. My onc nodded and gave his approval for wait and watch. Surgeon and remainder of team (including radio onc) agreed as well. (Not necessary for me, but nice.)

When asked why pre-surgery MRI and post-surgery Mams were waived, it was indicated (sad that in today’s litigious society, it cannot be overtly stated) that it would just “lead to more of this.” I appreciate and trust this evaluation that, at least at this time, I strike my team as a patient who is both highly interested in her health, and educated enough to affect her outcome in a wait-and-watch situation.

Oncotype DX DCIS assay also ordered. DCIS score: 13 (11% recurrence risk @ 10 years, 4% invasive recurrence @ 10 years). Good enough odds for me, especially considering my health level, early mom-hood, done (or nearly so) with periods, and stepped-up diet and exercise plan (the best adjuvant therapy!) Team agrees.

Going forward I almost hesitate to screen, but shall seek safe and accurate ways if possible. God will guide, as He has thus far. I’ll keep this team, as they know my situation and will less likely overreact than strangers might. And we’ve become friends. In just 8 short weeks, I believe we have forged a bond that will not easily be forgotten.

You can see a longer version of my story at: http://dcisnorads.blogspot.com/

2 thoughts on “Kay”

  1. Kay Singleton said:

    Update: In October 2013, Dr Michael Lagios weighed in, saying initial biopsy was only low grade (no intermediate, due to no necrosis). Confirmed decision to forego radio/hormone therapy. On breast screening, he stated that mammography alternating with MRI is a good plan (6 mo intervals for 2 years). -Risk of recurrence is not impacted by compression to surgery site. Also: “Facilities offering RODEO and similar MR technology abound. The critical thing is finding an experienced person to read them.” Dr Harms (developer of RODEO) is such a person. He is in semi-retirement now, but still available for 2nd opinions. I’d like to use Breast MRI for my first follow-up screening, keeping Dr Harms in mind for this..
    On hrt, he sees no evidence that hrt I used prior to dx (transdermal estriol and natural progesterone cream) had anything to do with this dx, He further opined that there’s no evidence that (in low grade DCIS), discontinuing this therapy would impact recurrence, even though it is estrogen/progesterone receptor positive.

    • Dear Kay,
      Talking to true experts like Dr. Lagios and Dr. Harms is so affirming. They have the confidence to make the call. Both of these men have been lifesavers for me.

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