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 groups”:

DCIS Integrative Support & Empowerment

Common topics, perspectives, posts and discussions:

  • DCIS is NOT one condition and should not be thought of or treated like invasive cancer
  • Women need to take time to gather as much information about their particular kind of DCIS and not feel rushed into aggressive “cancer” treatments
  • “Standard of care” (surgery, radiation and drugs) is questioned and challenged
  • Screening for breast cancer should include information about harms (excessive biopsies, fears and anxiety; DCIS overdiagnosis and overtreatment)
  • Insights and resources are often shared about the latest medical research, risk assessment tests, clinical trials, and imaging options
  • Active Surveillance PLUS (monitoring PLUS holistic strategies for cancer prevention, risk reduction and natural healing)
  • Open to anyone interested in supporting women with DCIS  (even men!)

Group Description: “You are invited to join this group because you share in the values and spirit of compassion, respect, intuition, wisdom, kindness, encouragement, positivity, upliftment, openness, friendship, mentorship, inclusiveness, peace, love, truth, justice, health, happiness and optimal wellness.

You share in the dismay of DCIS over-detection, over-diagnosis, over-treatment, injustice, deception, hype, criticism, shame, blame, guilt, fear, righteousness, judgement, negativity and bullying of any kind.”

DCIS Support Group

Common topics, perspectives, posts and discussions:

  • “Standard of care” conventional treatments for DCIS
  • Single and double mastectomies, reconstruction, lumpectomies, radiation, endocrine therapies, biopsies, surveillance and treatment side effects
  • High grade / high risk DCIS
  • Micro-invasion/invasive cancer found in surgery
  • DCIS referred to as a “ticking time bomb”

*** Women have been banned from the group for linking to “alternative” resources, and discussing or linking to articles about mammography harms such as overdiagnosis and overtreatment of DCIS

From the Admin:

“We tend to lean (hard) toward conventional medicine, and research based on scientific method. Woo, purely anecdotal evidence, and denial of the malignancy of DCIS are not things that are a good fit. We are open to (and love) complementary treatments, and the expanded options available to women – but also believe in protecting the 20% of women whose biopsy diagnosed DCIS ends up being re-staged as invasive cancer, after surgical pathology. We run the gamut of treatment choices, and try to be respectful – but we also are very vocal about the tendency of DCIS to be a slippery stinker of a disease.”

Group Description: “Female-only group who have or have had DCIS (Ductal Carcinoma in Situ). Since DCIS is a noninvasive cancer, women who deal with it often suffer severe losses and physical/emotional symptoms but may feel guilty for classifying themselves with other cancer survivors.

IMPORTANT: We message everyone who makes a request to join. For security reasons, we have made it a requirement of the group that anyone who is admitted must first reply to our message with a brief description of her DCIS experience.”

THE ALTERNATIVE DCIS BREAST CANCER GROUP

Common topics, perspectives, posts and discussions:

  • Strictly alternative healing protocols
  • Angela, the founder of the group shares MRI images of her large DCIS reducing utilizing alternative strategies and no surgery
  • Not open to discussing any conventional treatments or medical interventions

Group Description: “More and more women daily are being diagnosed with DCIS – (Ductal Carcinoma In Situ) a form of Non Invasive Breast Cancer – treated in most cases more aggressively than some Invasive Cancers – this Cancer was completely unknown to me before diagnosis in October 2013. My Journey and life with DCIS high grade and non invasive with no family history – which is why I have chosen to treat myself solely with diet, good nutrition, immune building, other therapies and lifestyle changes. In doing so I have vastly improved my overall health, lost weight & have reduced my Breast Cancer in the process from 7.4cm to 5.4cm in 9 months….. My Oncologist is now very intrigued and is working with me to hopefully help prevent the prescribed Mastectomy…. This group is for those people who wish to follow my journey and discuss along the way the possible alternative routes I am taking – maybe helping them before or after surgery to fight Cancer and build up their immune systems….. I am not a Dr nor am I a qualified nutritionist, just someone who has worked previously in the health sector and has certain knowledge and beliefs that are proving successful. For me it is the only way forward and am very excited to share my experiences –  the results so far are over 4 MRI’s last June 2014 – future MRI now scheduled 6 months not 3.” – December 2014 Angela Holden-Davies

DCIS Non invasive Breast Cancer Group

Group Description: I am starting this group to meet other people who have been diagnosed with Ductal Carcinoma In situ the earliest form of Breast Cancer! At 41 I was diagnosed with DCIS in January 2013! I had a bilateral Mastectomy in March 2013 and am now going through reconstruction! I am looking for people who have gone through this same type of Breast Cancer to join my group!!

High Grade Negative DCIS Support Group

Group Description: “High grade DCIS means negative for progesterone and estrogen breast cancer. This is the PUBLIC page. For the PRIVATE DISCUSSION group page for women with this exact diagnosis please go to High Grade Negative Support Group Discussion on Facebook”

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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