Coping & Support
A DCIS diagnosis can bring a range of mixed emotions. You may feel scared, relieved, confused, overwhelmed, or some combination of these feelings. The psychology around a DCIS diagnosis is highly varied and complex.
Because DCIS is considered the earliest form of breast cancer, and many view it as a pre-cancer, you may feel (or be made to feel) that you are not entitled to the same social and emotional support that is available for invasive breast cancer patients and survivors. But this couldn’t be further from the truth.
Even though DCIS is not invasive or life-threatening, the conventional treatments are highly aggressive and on par with treatments for stage 1 invasive breast cancer. So while you may be told by your doctor that you have nothing to worry about, in the same breath that doctor may recommend a double mastectomy. It’s downright confusing, and in the face that confusion, you may assume a worst-case scenario, leading to fear and anxiety. Conversations with your medical team will greatly influence your perspective, which is why it is so important to have a doctor that you trust, and who will communicate openly and honestly with you.
Researchers are working to better understand the natural progression of DCIS so that future patients can have a clearer sense of their actual risk of invasive cancer, and doctors can tailor their conversations with patients and recommended treatment plans accordingly. In the meantime, DCIS remains a highly confusing diagnosis and most patients will undergo treatment that is both physically and emotionally taxing.
There are no right or wrong feelings. Get the support you need. Surround yourself with doctors, family and friends who will support you as you navigate this chapter. Even though you may feel like your whole life revolves around your DCIS diagnosis, try to make time for things that will ease the stress, like exercise, sleep and socializing. Take your mental health seriously and get professional help if you need it.
Most importantly, remember that you are not alone: in the U.S., 60,000 women are diagnosed with DCIS each year, and the numbers are rising.
DCIS Support Groups and Forums
There are hundreds of national, regional and local organizations that provide breast cancer support services. Below are organizations and social media groups that provide DCIS-specific support services. This list is not exhaustive and we strive to keep it current, so if you know of DCIS-specific support groups not included here, please share with us at: info@dcisunderstood.org.
Please note that DCIS Understood is not directly affiliated with any of these organizations or groups. We do not administer, moderate or review the content shared by these groups on their websites or in their forums.
Bay Area DCIS Support Group: Offers a twice monthly virtual support group meetings via Zoom for DCIS patients.
BreastCancer.org: Provides education information and peer support via a DCIS-specific chat forum.
Dana Farber Cancer Institute: Provides educational resources including a quarterly newsletter, as well as an annual DCIS patient forum.
Facebook: DCIS Support Group: Support group for women (female-only group) who have or have had DCIS.
Facebook: DCIS Breast Cancer Support Group: Support group for DCIS patients.
Facebook: DCIS – Diet, Lifestyle & Safe Imaging: Support group that shares information about holistic health strategies to prevent cancer and potential medical harms while improving quality of life, as well as resources to support an integrative and individualized approach to optimal health and well-being (before, during and after a DCIS diagnosis).
ShareCancerSupport.org: Provides an ongoing virtual support group that meets via Zoom for those diagnosed with DCIS and who are undergoing treatment or in the survivorship stage.