Donna’s 9 Year Update — Top 3 Questions, Lessons Learned, and 2019 Projects

Pinto Family_Nov 2017

2019

Aug 2010_Ross wedding

2010

If not for photos with my children…

I would not believe it’s been nine years since my journey with DCIS began.

question mark redTOP 3 QUESTIONS I AM OFTEN ASKED

1. Did I ever have a recurrence of DCIS or invasive cancer?   

NO!

Donna’s Journey starting at Part 2June 2011 details my experience with “residual” low grade DCIS. This was explained to me here: Listen to My Phone Consultation with Dr. Michael Lagios.

see-it2.  What do I do for follow-up imaging ?

See my post: Bye-Bye Mammograms: Hello SonoCiné Ultrasound

bodymindspiritsoul3.  What diet and lifestyle did I initially follow?

Everything is listed in Holistic Health

TOP 3 LESSONS LEARNED

  1. Trust your intuition.
  2. One size does not fit all.
  3. Support is vital.

BeWiseGraphicMY 2019 PASSION PROJECT

#Be WISE — Women Informed Supported Empowered — is an educational campaign to counterbalance misperceptions, confusion, and fears around “early detection” of breast cancer and DCIS.

MY WORK AS A PATIENT ADVOCATE

I am headed to London this week for Cancer Research UK’s Grand Challenge 2nd Annual Summit bringing together seven funded teams — one of which is PRECISION (PREvent ductal Carcinoma In Situ Invasive Overtreatment Now). Here is a short video about PRECISION:

It is truly an honor to work with physicians, researchers, and patient advocates from around the world on two major research projects — COMET and PRECISION — dedicated to solving the DCIS dilemma.

thumbnailprecision team london 2018

WHY THIS RESEARCH IS NEEDED

The over-treatment controversy made mainstream news in 2015 after results from a large study showed “no survival benefit” for treating DCIS with surgery. Good Morning America featured a powerful segment — ‘Stage Zero’ Breast Cancer: New Study Casts Doubt on Early Intervention.

KPBS_TV_Aug 24_2015I was invited on KPBS to share my story along with a medical oncologist.

Dr. Reema Batra stated, “Clinical practice would not change — until there is evidence from a randomized prospective clinical trial which compares the usual treatment (immediate surgery) to active surveillance.”

Without a study of this nature, Dr. Batra said she would continue to recommend the same aggressive treatments for all women diagnosed with DCIS.

GRATEFUL FOR MAJOR MEDIA…

Is Stage Zero Breast Cancer Really Cancer? Women Share Their Doubts

 

Is Stage Zero breast cancer really cancer? 7 ON YOUR SIDE investigates the controversy

womens-health‘Why I Refused to Get Treatment When I Was Diagnosed

 

 

#Be WELL #Be WISE!

 

 

About Donna Pinto

I was born and raised in New Jersey and moved to the San Fernando Valley of Los Angeles when I was 12. I graduated with a BA in Journalism/Advertising from San Diego State University. After a short stint in magazine ad sales in LA, I was offered my dream job working for Club Med. I spent two years working at resorts in Mexico, The Bahamas, The Dominican Republic and Colorado. My husband Glenn & I met while working at Club Med in Ixtapa, Mexico. We returned to "real life/jobs" for three years before we embarked on a two year honeymoon around the world. Together we wrote a book called "When The Travel Bug Bites: Creative Ways to Earn, Save and Stay Abroad." I am also the author of "Cheatnotes on Life: Lessons From The Classroom of Life," a quote book for new graduates. Becoming a mom changed my life and I was fortunate to work part-time from home with many amazing nonprofits. In 2010, a DCIS diagnosis inspired me to an investigation that culminated in creating DCIS 411 and Give Wellness.
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5 Responses to Donna’s 9 Year Update — Top 3 Questions, Lessons Learned, and 2019 Projects

  1. Ann Galluzzo says:

    Dr. Lagios is no longer taking patients now what do I do

    Like

  2. informedconsent2014 says:

    Hi Donna!
    You are doing such tremendous work to educate patients about the truths surrounding DCIS! Here’s my latest update as of April 2019. After EIGHT YEARS of following several areas of “suspicious microcalcifications” and me refusing biopsy the entire eight years, today’s yearly follow-up mammogram has finally been downgraded to “probably benign”. Wow! When these calcs were first seen in 2011, everyone from my internist to a breast surgeon tried to harass me into having a biopsy. I totally refused. This continued year after year. The calcs weren’t growing or changing, and yet they continued to recommend biopsy. At one point, I had two areas of calcs on the R breast and one area on the L breast. By now, I would have had THREE biopsies! No way! I refused to be used as a human pincushion merely on the basis of some non-changing microcalcs.

    Finally they could no longer continue to recommend an invasive procedure due to a lack of supported findings, so they downgraded me to “BIRADS 3: probably benign.” This is the first time I’ve ever seen this particular type of category. Apparently they use this category to perhaps play it both ways. They keep the BIRADS3 (which usually means “get a biopsy”), but tack on the “probably benign” to it. Interesting. They finally had to backtrack and start using the word benign to describe my microcalcificaitions. They did not recommend a biopsy this time, so I am certainly happy to see that! .

    I feel at least somewhat vindicated that I stood my ground on this for eight full years. From the great work and information you provide here at DCIS411 I learned so much, and also from such great doctors as the work of Laura Esserman and Gilbert Welch. I knew this was not a medical emergency and that I should have been given the option from the beginning of simply monitoring the microcalcs with follow up exams. I knew that things might change over time, but there was no way I was going to submit to a biopsy or multiple biopsies until the reports showed substantial change. They never did show any change, and now I’m downgraded to “probably benign”. Wow! It just proves what we have all said all along about microcalcifications. That finding is not an immediate health emergency, you have time to do your homework and do NOT be rushed into a biopsy over microcalc findings!!!

    I just wanted to update you, as I have for the past 8 years since I’ve been posting here at DCIS411. I realize that my next exam might show something different, but I will make an informed decision when it comes to biopsy, surgery, treatments, or anything else related to breast issues. Fear is the biggest weapon these docs use against uninformed women! Yes, there are definitely times when biopsy is indicated, but there are a heck of a lot of times when it is NOT, and microcalcs is one of them. Thanks again for your fabulous work, you are a true hero!

    Like

  3. dp4peace says:

    WONDERFUL news!!! Thanks so much for always sharing here! Women need to hear stories like yours and mine and hopefully we can grow the tribe of informed, supported and empowered women through #BeWISE (https://dcis411.com/bewise/)! Cheers to you and continued blessings of peace, love, light, truth, health, and happiness!!!

    Like

    • informedconsent2014 says:

      Thank you so much for your continued support Donna! I will always share my updates on your forum here because these various types of stories are very important, and as I’ve said repeatedly about microcalcifications, saying “no” to biopsy and insisting on better and more common sense options such as monitoring/watching vs. invasive procedures, is the first step to regaining control in this situation. As we know, the biopsy can then lead to a series of harmful and often UNnecessary treatments, surgeries,. etc. so I strongly feel the biopsy is the first element that needs to be challenged when confronted with suspected DCIS or microcalcfications on mammograms. Love and light to you, also, Donna, continued health, and thank you for always putting the TRUTH out here!

      Like

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