“Despite all the women being diagnosed with early-stage cancer and being treated aggressively to keep their DCIS from spreading, the rate of invasive cancer hasn’t gone down; it’s gone up 25 percent,” says Dr. Laura Esserman.
More than a million US women may have received unnecessary and invasive cancer treatments over the last 30 years, thanks to routine mammograms. Thousands of women with a DCIS diagnosis face life-altering decisions. Hysteria around breast cancer is a big part of the problem.
The purpose of this site is to provide up-to-date research, personal stories and valuable resources that offer support, treatment options and peace of mind for women diagnosed with DCIS (Ductal Carcinoma In Situ). The intention is for it to be interactive – where anyone affected by a DCIS diagnosis can comment on posts and share openly about their experiences, questions, concerns and triumphs.
It is estimated that 60,000+ women annually are diagnosed with DCIS which is considered “stage zero” breast cancer. It is a highly confusing diagnosis. Although it is NOT invasive cancer and most low grade DCIS will never progress, “standard of care” treatments are alarmingly aggressive and invasive. The majority of women, driven by an overwhelming sense of fear and confusion, rush into lumpectomies, mastectomies, weeks of daily radiation, toxifying drugs with harsh side effects along with a future filled with excessive mammograms and biopsies. Even within the medical community, there is great controversy and debate around “over treatment” of DCIS. We are told 50% believe it is a precursor to cancer and 50% believe it will never progress. It has been called “stage zero” breast cancer, pre-cancer, pre-invasive breast cancer and non-invasive breast cancer. There is now a movement among breast cancer/DCIS experts to take the word “carcinoma” out of the diagnosis to undo the current hysteria around DCIS and women seeking prophylactic mastectomies. With all the controversy, it is no wonder women and their families feel confused, overwhelmed, scared, uncertain and pressured. Upon investigation of DCIS, the information overload can send one spinning.
This site is simply to make life after a DCIS diagnosis easier.
Since January 2010, I have been digging for information in an effort to gain understanding and gather support for a healthier, saner way to live with a DCIS diagnosis. Above all, my intuition remains my best guide and resource.
We all have a choice. We do not need to buy into the fear and hysteria around DCIS. Understanding, not ignorance, is bliss. No matter what anyone says (even medical experts), you and only you will know what is the right path for you.
May you find useful information, support, options and sanity here.
Donna Pinto is the Founder of DCIS 411 and Co-Founder of DCIS Redefined. Donna is a passionate Patient Advocate, Certified Nutritionist, Author, Speaker and Founder of Give Wellness, a nonprofit organization which brings wellness workshops to under-served groups and grants wellness wishes to individuals facing cancer or other life/health challenges.
“Travel light, live light, spread the light, be the light.”
I so greatly appreciate finding this site after a friend linked me to this and also the forum you posted this site address on! I have just recently been diagnosed and visited my first oncologist today with two women friends to help me record/remember/question him. I meet with a surgeon on Monday with accompaniment again and do not plan to rush into any treatment but am gathering all the information I possibly can before deciding my next steps. I too have great suspicion about the overdiagnosis/overtreatment for what appears to be a very hard to pin down “condition” I prefer to call it than a cancer. Calcifications that look different. Well, that doesn’t make them instantly scarey to me. Reading your comment on the Breast Cancer.org was like a balm to my soul after seeing so many reacting in fear and terror. I really want to not live my life in that way and I hope to never be that scared about my own body. It was unclear to me from the post I read but I think you did get some treatment but not radiation or hormones. Did you get a lumpectomy?
I have a friend who opted for just that treatment as well last winter and she is confident in her decision. I will tell her about this website. She’s also a massage therapist and never worried about her diagnosis she told me.
I will post what I learn from the surgeon I’m meeting w/ Monday. My daughter lives in SF area of CA but I am here in NYS (Albany).
Sending you blessings of deep gratitude at this season of Thanksgiving. you’ve helped me already more than you know by being a voice of reason and grounded in Self-love.
Thank you so much. Your message gave me chills and got me teary-eyed! I am so happy that I could be of practical help, comfort and support. Women like us need to be there for one another!! I am forever in a state of gratitude for all that I have learned following my DCIS diagnosis. Have you read “Donna’s journey?” That page tells my whole story and it continues on with the “Blog” which you can click on at the menu bar. I initially had a core needle biopsy that showed ADH. That’s when I first met with a BC surgeon — she easily persuaded me to do another “wide excision” biopsy, which I later learned is really a lumpectomy. I was clueless and totally trusting. The surgery left a “positive” margin and then she wanted to do another surgery to “clean up the margin.” That’s when my nutritionist/healer friend Adriana stepped in and taught me everything I now know about the body, healing, cancer, pre-cancer, fear, detoxification, common sense & love. I did not do another “blind” surgery at that time because the MRI 1 month later showed nothing there. I became my own advocate and continued to get more opinions and made decisions as things presented themselves. I did have another lumpectomy last Oct. due to both mammogram and MRI showing highly suspicious calcifications. So, the DCIS was infact still there and growing. The good news was that it had not developed to high grade or invasive cancer as the surgeon and radiologist were scaring me with. When that surgery left 2 positive margins, I decided to do a re-excision this time. Now I am at 3 lumpectomies and still there is a “close” margin. I decided no more surgery, no radiation and no Tamoxifen. My RODEO MRI was clear 3 months later (Jan 2012). I decided no more mammograms as well. I will do annual MRIs. My reasons are all on my blog. I have spent endless hours researching. I am at total peace with all my decisions. I am not afraid. And it brings me so much joy to know I may be holding the light for another woman to not be afraid. To question doctors and treatments and investigate all of it. You sound like you are in a very good place of calm. I’m so happy I could help. If you ever want to talk, please feel free to email me: firstname.lastname@example.org. Blessings and Namaste, Donna
Hi Donna! Thank you so much for your swift and uplifting response! I just got off the phone with the nurse at the oncology office apologizing to me for prematurely getting my consent for the DNA marker test she had thought I would be eligible for getting through a clinical trial. It turns out that they can’t do the HER-2 test int that trial without first conducting a lumpectomy so the biopsy tissue is not enough of a sample for her to send. I had an extensive conversation with her b.c I know she had sincerely hoped this test would help me gain more information about my cluster and she felt bad that she misunderstood the study’s limitations. I also told her about your website b/c it is important for medical people to understand what we, as women, really experience when they boggle and miscommunicate, and work from a fear based perspective. She is very open and caring and understands my perspective. I hope that the surgeon I meet w/ Monday shares that perspective and supports my data collection process:) I’ve been told that she’s not knife-happy so that’s a good sign but still we’re talking Albany Medical Center, not San Francisco.
I think I need to learn more about HER-2 and BRACA 1 & 2 and all these genetic tests that can offer info about the cluster. I’ll keep reading your site and others that provide real information.
Thanks again to you for this generous service to our community of women and as my new friend I met last night at an Energy Healing workshop calls us, we are now breastfriends!
Cheers and beauty to you this holiday and always~
I was recently diagnosed with DCIS, and it has already been a roller coaster ride. First the radiologists called and said I had breast cancer then the surgeon said I did not! He gave me the typical treatment option of a lumpectomy with 5 weeks radiation . I scheduled surgery for the following week. However each day I became uneasy, so I called to postpone the surgery till I have more knowledge about what is too much for this. I was told I had a1 in 3 chance of developing breast cancer but there is too much controversy on how DCIS is treated. No wonder no one feels comfortable! I am doing my own research by reading personal stories and what other women feel is right .
So, I haven’t posted here in awhile but seeing Robin’s post prompts me to share an update.
I have not followed the “standard of care” for DCIS as its treated in Albany ny where I live. Instead, I’ve chosen to live a cancer resistant life -radically changing some lifestyle habits including food and drink options (eliminated most alcohol, sugars, processed foods, caffeine, etc..) and amping up other practices (walking, yoga, dance, music, etc.)to minimize stresses and toxins. I did decide to have a thermogram in April 2013 and am having another one this September to compare it. Also this April, I had a breast MRI (my primary doc agreed w this strategy) that showed the same calcifications
calcifications.-to us, this was a good news result. I agree and plan to continue doing what I’m doing. The industry cannot be trusted to serve our highest health. I became a certified holistic health coach last year through IIN (Institute for Integrative Nutrition) and am dedicated to sharing my own stories of increased vitality and those of my clients to help shift others toward optimal health and focusing positively on personal and community well being.
I’m happy to elaborate if you care to correspond with me. My email is email@example.com.
Awesome Chrys! Thanks for sharing your path and insights! Congrats on becoming a holistic health coach! What a blessing!! Change will happen in the “industry” when we women demand it! Peace, health and namaste, Donna
I made a decision yesterday to spend a minimal amount of time each day thinking about my DCIS, most of which is educating myself about my own status right now.The stress of what to do ,what not to do is overwhelming and certainly not helpful! I made an appointment in Pittsburgh for a second opinion.Hopefully,they dont throw in another wrench! As I said with all the breast cancer research why do I have the radiologist tell me I have breast cancer and the surgeon says I do not , yet he recommends lumpectomy,radiation and who knows what else.I see this path as a rocky road because of lack of knowledge on who will develop breast cancer from DCIS.I do think its good they are detecting cancer at a very early stage and saving womens lives,I think we can all agree on that.
Great you are taking time to understand your personal situation, pathology and getting a 2nd opinion. I highly recommend Dr. Lagios for a 2nd pathology opinion! I am not so sure I agree with the “early detection saves lives” mantra — Here is my article from last year after doing intense research on the subject: https://dcis411.com/2013/10/04/less-pink-more-green-an-intelligent-and-urgent-makeover-for-breast-cancer-awareness-month/
Blessings of peace and health to you as you navigate your journey. Have you seen my other website — http://www.dcisredefined.org ?
I don’t understand that I never get any e-mails from here or answers.
I don’t seem to be able to subcribe..
Sorry, Did you put your email address where it says “follow?”