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.

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

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”