31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 28 — Risks of Sentinel Lymph Node Biopsy! New Study Shows NO Benefit for DCIS
Did you know… Despite experts not recommending sentinel lymph node biopsies, between 17% and 40% of women with DCIS currently undergo this unnecessary procedure that comes with serious side effects. Risks of sentinel lymph node biopsies: Pain, wound infection, and lymphedema, a painful condition that can restrict a woman’s arm movements. Patient advocate Ann Fonfa, […]
31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 25 — Unbiased 2nd PATHOLOGY opinion is a MUST
Did you know… Aggressive treatments for DCIS are based on pathology — and 25% may be wrong. This happened to me. I had several opinions and 3 different pathology reports. My gut told me something was not right and I needed to keep investigating. Luckily I was referred to expert pathologist, Dr. Michael Lagios. He […]
DCIS Support — Find Your Tribe on Facebook!
There are five distinctly different “DCIS support groups” on Facebook. Some have strict rules. Differing viewpoints have led to heated debates and frustrations. Hopefully everyone can find a support tribe they most align with. Some may feel they benefit from joining more than one group. Below are perspectives and descriptions of differing DCIS Facebook “support […]
Thankful for PCORI & Patient-Centered Research
I recently had the opportunity to attend the annual meeting of PCORI — Patient-Centered Outcomes Research Institute. Three days of presentations and panel discussions all focused on one recurring theme: Patient voices, preferences, values, experiences, and outcomes matter. I felt like I was in patient advocate heaven. Suzannah Fox, former Chief Technology Officer of the […]
Great Gratitude & Great “Finds”
As 2013 comes to a close, I want to express my heart-felt gratitude for all of the wonderful women who have contributed their wisdom, support, resources and personal stories on this site. Four years ago, I felt like I was completely alone in my relentless questioning of the “standard of care” regarding DCIS. Yet I […]