Mis-Diagnosed with DCIS at Age 26 and 38 Weeks Pregnant: How Intuition, Non-stop Research and a 2nd Pathology Opinion Changed My Life

My gut and intuition told me to research my head off and to understand what’s going on. I learned very fast that just because you have a “low grade” “stage zero” breast cancer that doesn’t mean the treatment is less than any other INVASIVE breast cancer.

The Value of Recording Physician Consultations

Recording consultations with physicians is extremely valuable, especially with regards to obtaining results of screening or diagnostic tests, biopsies, surgeries, or discussions about future cancer risks, or potential treatments. Recording the consultation enables: ability to glean important information missed or not comprehended due to information overload, shock, language or hearing issues, etc. ability to share […]

31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 30 — NO “Survival” Benefit of Aggressive Treatments for DCIS — Women Not Informed

Did you know… Women diagnosed with DCIS, also known as “stage ZERO” breast cancer, are often rushed into extremely aggressive treatments (surgery, radiation and drugs) that actually have no survival benefit… yet this information is often not told to them. Instead women are given confusing “risk reduction” statistics with each of the “standard of care” […]

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 27 — Grade “F” in DCIS Communication

Did you know… Some health-care providers get an “F” in communication. Celebrity chef Sandra Lee said her doctors told her DCIS was a “ticking time bomb.” In January, 2010, when I brought an article, Take Carcinoma Out of DCIS and Ease Off Treatment, to show a breast surgeon about my preference for “active surveillance” of […]

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 […]

31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 24 — The Word “Cancer” is Scary & Misleading for DCIS

Did you know… Several breast cancer experts over the last 10+ years have questioned whether the word “carcinoma” should be removed from DCIS (Ductal Carcinoma in Situ). “Because of the noninvasive nature of DCIS, coupled with its favorable prognosis, strong consideration should be given to remove the anxiety-producing term “carcinoma” from the description of DCIS.” […]

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 […]

What is “Low-risk” DCIS & Why is The COMET Study Urgently Needed?

The COMET Study is the nation’s first prospective, randomized clinical trial aimed at resolving an ongoing debate about the best way to manage “low-risk” DCIS (Ductal Carcinoma In Situ), also known as “stage zero” breast cancer. “This is a trial whose time has come. Many of us have felt for two decades that this study […]

DCIS — Beyond “One-Size Fits-All”

Today, women newly diagnosed with DCIS have more support, options, and resources than ever before. Below are eight ways to help you create an “individualized” and empowered plan-of-action… #1.  CONFIRM YOUR PATHOLOGY Dr. David J Dabbs, Prelude Dx Second Opinion Service Dr. Jean Simpson #2.  ASK YOUR DOCTOR TO ORDER A BIOLOGICAL RISK ASSESSMENT TEST […]