DCIS is NOT Breast Cancer — An Online Support Group Leading a Paradigm Shift

A paradigm shift is defined as “an important change that happens when the usual way of thinking about or doing something is replaced by a new and different way.”

DCIS – Is Not Breast Cancer! — an online support group created in 2020 — has quickly attracted over 1.5k women with approximately 25 new requests to join each week.

The group’s intention is to support women who are interested in learning about and supporting one another in an unconventional mindset and perspective about DCIS — one that is based in a core belief that DCIS is NOT breast cancer — and should not be treated like “cancer.”

The BackStory of the Group’s Origin

Jill Rezak

Jill Rezak, the group’s founder said, “I started this group because I wanted women who were diagnosed with DCIS to know they didn’t have ‘cancer,’ and therefore didn’t need surgery. When I was diagnosed with DCIS, I didn’t know any better, and unfortunately I had a lumpectomy.”

Jill had been actively engaged in other online DCIS support groups. She would often post links to research studies to help women find information that they may not be aware of. Sometimes heated debates ensued.

Booted Out After Sharing Research on Lymph Node Removal Being Unnecessary

Jill said, “A woman posted she has DCIS and is getting a lumpectomy and the surgeon wanted to remove some lymph nodes to see if the cancer spread. I saw the post after 20+ women posted encouraging to go ahead and remove your lymph nodes as DCIS does become invasive. I told this woman not to remove lymph nodes and posted about 15 articles about DCIS and included a link to DCIS411. I even pointed out that the name of the group had ‘non-invasive’ in it. I also posted articles about what non-invasive means. Some women reported me to the admin and she kicked me out.

The next day I started our group [DCIS is NOT Breast Cancer].”

Donna — Dismissed and Disparaged After Sharing Article about Overdiagnosis and Overtreatment

Donna Pinto

I too had been abruptly removed from a DCIS Support Group after sharing an article I was interviewed for.

A journalist from Ireland had sent me some questions by email — one of which was:

Do you think over-diagnosis and over-treatment is a significant problem?

My answer to this question was used as a bold headline:

‘Over-diagnosis and over-treatment of breast cancer is a travesty in women’s healthcare’ My Story: Donna Pinto

I had posted the article link in some other groups and got a lot of good feedback.

I was shocked when I received a comment from Lisa (not her real name), one of the admins of a DCIS Support Group with over 3,000 women.

Lisa: “This headline is absolutely appalling. Donna Blaurock Pinto – you should know better. This is my friend, (photo), who died of metastatic breast cancer, last week. The TRAVESTY is the lack of funding for mets research. You having a mastectomy (oh no, not that horrible fate!!) pales in comparison.”

Lisa went on: Donna Blaurock Pinto – information contained in this is not accurate…

…in the article, it doesn’t mention your lumpectomy. This is what is at issue, and what’s clouding your message. if you remove the DCIS, surgically, then it is surgical treatment, not active surveillance. And lumping intermediate DCIS into “low risk” is going to bite this research in the rear – intermediate with necrosis is a tricky bastard – likes to grow large & bust out multifocal invasive BC. There is research backing that up, too. 

you had lumpectomy, re-excision, and “close margins”. You are recommending that other women do less treatment than you did. You are recommending that they do not even do lumpectomy – that they trust possibly ineffective screenings, once a year, rather than at least getting surgical pathology results. This is the problem. If you start to lead with your true, full, and accurate experiences – including that the DCIS was removed – then you might be able to get more women to be interested in your journey.

I attempted to explain:

I have always been completely transparent with my entire story. You can read it all here: https://dcis411.com/donnas-journey/ It’s been published on my blog since Dec 2011… It’s complicated as it involves refusal of treatments… surveillance for 18 months…then a 2nd mammogram scare, and yes I did surgery due to being told it was likely INVASIVE…..and then a positive margin and re-excision to be over and done with it….but still a close margin and back to square one with the pressures for mastectomy or at least radiation and tamoxifen. Again I was on my own as I wanted less than standard of care treatment. It did not make sense to me to have a mastectomy or radiation after I got 2nd pathology opinion from Dr. Lagios…but even he said to me I would not do nothing (after the surgery). I got his permission to publish the recording of my consultation with him so that other women could learn from my questions and his expert answers….He charged $600-750 and not always covered by insurance. He downgraded my DCIS and said it was all in fact LOW grade when 3 other path reports stated intermediate or intermediate to high grade. You can listen to it here: https://dcis411.com/2015/02/13/listen-to-my-phone-consultation-with-dr-michael-lagios/

I continued…

Many women are now doing active surveillance — as I did. Some of them will be facing biopsies and surgeries because the darn imaging is so inconclusive and this is the only way to know when there is a highly suspicous area as was the case for me. Please do not minimize my approach — which was in fact refusal of all treatments, surveillance only for 18 months. Only when faced with a serious potential invasive cancer did I elect to forego another needle biopsy and have a wide excision (same as lumpectomy but there is no lump). I created my website to educate women as I only got educated about alternative more conclusive imaging AFTER surgeries failed. Aggressive treatment is perfectly right for some, but not for everyone. As my story unfolded I learned about things that I was not informed about and I think women should hear all sides and be properly informed and be supported for their choices and preferences. I made the best decisions I could given the unknowns as we all do. It’s really hard going against the majority, but there was some legitimate research backing my choices….and now it’s become more legitimate. My message is for women to be fully informed about all the pros and cons of screening and treatments. I was young, naive and trusting but I felt blindsided when the diagnosis and treatments were presented to me. I put the brakes on and did research and found Drs saying we should take low-risk DCIS out of the screening agenda and ease off treatment. This resonated with me. I thought I can not be the only woman out there in the whole darn world that had this feeling of wanting to do less. 

The Criticism Kept Coming

Over the next two days (after I posted the article link), several women began a bombardment of comments critizing me and the article I posted. I was astonished. I saved many of the comments in a folder which I labeled Group Mockery. Here are just a few:

If I’d taken the same approach I’d likely be stage 4 by now.

Over treatment?! Bollocks!! If I’d have ignored it I’d be planning my funeral!

Cancer is always serious business. 

Thanks to “over diagnosis” and “over treatment” activism, women aged 35 through 50 will now have to fight to have breast cancer screening covered by insurance. That means they have less chances for early detection and lowers their chances for survival. Thanks for helping to set women’s health back 25 years. 

ditto! I so agree I would be dead today if I had done active surveillence!!!!! so maddening these irresponsible articles keep showing up.

it totally sucks that someone would again, discount a diagnosis like this. 

I’m so sorry (admin) How horrible. 

I didn’t take chances it ended up saving my life. 

Further accusations the admin wrote me in a private message:

Anything positive that you could have brought to our group has now been overshadowed by your self promotion and dismissive treatment of any information that doesn’t fit your narrative. It didn’t have to be this way – but I’m afraid that big egos seldom make good listeners.

Pretty harsh, I thought.

I had been messaging with Lisa just prior to me posting the article link about overdiagnosis and overtreatment. I wrote: My interest and research is mainly in low-risk DCIS and I represent patient perspectives and can help in a balanced way… since I did Active Surveillance and ultimately had surgery… I understand the psychological distress of doing surveillance. Those women can have far more anxiety. I counsel many….never tell them what to do, but I give resources and encouragement to be strong when they are overly pressured.

The Disparagement Continued

After I was removed from the group, I learned my name was further disparaged by the admin. A friend sent me the announcement the admin made in the group:

I would like to address the removal of Donna Blaurock Pinto from this group. She made choices to continue posting self promotional articles and links, and she lied about our group and members of our group, in her group.

Now I was accused of lying??? — I was flabbergasted.

After I was abruptly kicked out of the group, I shared in my DCIS Integrative group about feeling mocked and bullied by members in that group. To call me out as a “liar” was disgraceful.

A few women sent me messages of support:

She really wasn’t being reasonable. You weren’t promoting yourself or your website! You were just trying to give information. Women need to know there are options. They need to know DCIS is not a death scare.

I’m so sorry that you suffered abuse for telling the truth.

What a disservice, you are a true gift working so hard to restore balance. Now such valuable info will not be able to be voiced and considered.

I am so sorry to learn this Donna. It is unimaginable. Just know that so many of us understand the importance of your pioneering efforts and are so grateful. Thank goodness my daughter knew you and passed along your information that prevented me from treatment I did not need.

I joined that group for about 2 days and had to leave because the level of fear (and of anything alternative) was more than I felt was helpful upon first diagnosis.

Geez. Sorry that’s how it was handled. I was following your post and found the article very informative.

I was diagnosed with low grade DCIS. I have decided to wait and see. I feel DCIS is over treated as well from everything I have read. I have voiced this and have been called an idiot because I choose alternative treatment. When I was blasted it was because I may make others feel bad about their decision to have mastectomies.

That is so sad, because I believe that is the site you first reached out to me with help and hope! That admin has done these scared, searching women a terrible disservice!

A friend in the other group also sent me some posts from women who spoke up and did not agree with the way I was treated:

I think this is unfortunate. I want to be fully informed and study all aspects of this disease. I follow several groups to get varied information and opinions. Whether she is self promoting or not, she has provided information and some excellent articles. I pick and choose what I feel comfortable with and make my own decisions regarding my treatment and care based on everything I’ve learned. We have enough stress with this disease without now having women who can’t coexist in a productive manner. Sorry this is happening to all involved.

I am sorry that Donna was removed. I never felt her posts were self-serving. I want to hear all I can whether I agree or not. I think it is everyone’s responsibility to gather as much info as possible and then check it out further before implementing. The info on Donna’s website helped me from making the wrong choice for myself 6 years ago. She is passionate about her beliefs and I admire that she feels compelled to share them.

The Spark to Create a New Group!

It was about a year later when Jill invited me to be a co-administrator of a group called DCIS is NOT Breast Cancer.

I did not hesitate. I said, YES, count me in.

For many years, I worked hard at staying balanced, diplomatic, and inclusive of everyone diagnosed with DCIS. I created a group called DCIS Integrative Support & Empowerment for this very reason. Unfortunately, more often than not, discussions would veer towards worst-case scenarios and the need for aggressive “cancer” treatments.

Jill and I both felt the time had come for a support group to lead a paradigm shift. One that was completely different from all the other DCIS support groups (even my own integrative group.)

Enter Nancy Riopel — Condemned for Posting about Active Surveillance

Nancy Riopel

Nancy and I had been communicating privately for some time. She was eager to join our admin team shortly after a similar disappointing experience with the same online DCIS support group that removed me. She wrote about her experience:

As I gained more knowledge about Active Surveillance, I tried to share what I had learned in the group.  I posted a few well done research studies and urged those who had not yet made a decision about treatment to consider the fact that there were some major clinical trials which suggested that Active Surveillance was likely to become the new standard.  I was amazed by the reactions that I got.  Many condemned me for sharing the articles and expressed that they felt they would be dead now if they had not gone ahead with aggressive standard treatment.  Some spoke of having seen women die of breast cancer — disparaging researchers, doctors and group members who advocated for Active Surveillance as an option in the treatment of DCIS.”Excerpt from Nancy’s story PART 4

In February 2019, Nancy was told her only option was a mastectomy after a diagnosis of DCIS. She documented her “roller coaster” experience as she became educated and started asking questions and pushing back against the medical advice she was given. Nancy’s enlightening four-part story was published by Breast Cancer Action, Quebec and subsequently as a guest blog on DCIS 411:

The Importance of Being Informed, Treated with Compassion, and Advocating for Active Surveillance — Nancy Riopel’s Enlightening DCIS Story.

Irreconcilable Differences

Nancy, Jill and I all felt a similar shock in other groups. When we would post articles or links about taking time to research a less conventional approach to DCIS, such as active surveillance plus holistic diet and and lifestyle changes, debates often ensued. We were usually overtaken by the majority who believed DCIS IS CANCER. Many felt the standard of care treatments were life-saving, despite studies showing no mortality benefit.

In addition, many women in other groups identifed as “breast cancer” patients and “survivors.” Sadly, this is often how it is described by healthcare providers and links on 1st page of Google searches. DCIS is often described as an early form of breast cancer, and most women are told they need to make an immediate apointment with a breast surgeon to have the “cancer” removed. (Big part of the problem!)

I cringed when the KPBS TV show host introduced me as a “breast cancer survivor” during a live interview in 2015 (below).

I said, I don’t even think it is “cancer” and I mention there are resources and support for an “alternative thought process.”

Why Women need THIS Group to be very very different from others!

Some might say, the group title is too polarizing.

Nancy said, “For me this group, [DCIS is NOT Breast Cancer], is important because women who have chosen to push back need a safe space where they aren’t constantly faced with a push to go conventional and surrounded by people who are afraid they are dying or will die of cancer. Also a place where they know they aren’t crazy for refusing treatment and aren’t alone.”

Many women state this is the only group they feel safe in and they do not want it to be like the other groups.

A True Support Group

It has taken years, but we finally have a “support” group with no debates, no condemnation, no passive aggressive comments, no ridiculing, no fear-mongering, and no encouragement of aggressive treatments.

Many group members resonated with an image posted stating,

“I STOPPED EXPLAINING MYSELF WHEN I REALIZED PEOPLE ONLY UNDERSTAND FROM THEIR LEVEL OF PERCEPTION.

One group member commented:

“This is impossible to explain.

The support of being in this group is priceless.”

Below are some of our group’s core perspectives:

Some say DCIS is “cancer.” We say DCIS is “NOT cancer.”

Some see DCIS as a scary shark.

We see DCIS as Overdiagnosis and Overtreatment.

Some say DCIS is a ticking time bomb.

We say DCIS is a wake-up call.

Some say we need more evidence. We say we have all the evidence we need.

For anyone sincerely interested in learning more about a healthy, holistic, non-conventional mindset about DCIS, we would love to welcome you and get to know you!

Please click the link below and request to join our ever-growing community:

DCIS – Is Not Breast Cancer!

Prospective members must answer three important questions to see if the group is the right fit. If not, women are referred to other groups which offer more support around conventional treatments for DCIS.

Comments are most welcome. Please feel free to share your thoughts below.

If you would like to receive an email notice when new posts are published, please enter your email address where it says “Follow”

About Donna Pinto

I am originally from New Jersey and moved to Los Angeles with my family at age 12. After graduating from San Diego State University with a BA in Journalism, I had a short-stint in magazine advertising sales before landing my "dream job" with Club Med. For two years I worked at resorts in Mexico, The Bahamas, The Dominican Republic and Colorado. My husband Glenn & I met in Ixtapa, Mexico and we embarked on a two year honeymoon around the world. This was also a research project for a book we wrote called "When The Travel Bug Bites: Creative Ways to Earn, Save and Stay Abroad." I am also the author of a quote book for new graduates -- "Cheatnotes on Life: Lessons From The Classroom of Life." In 1997, we settled in San Diego and I was blessed to work part-time from home for non-profit organizations while raising our two boys. In 2010, a DCIS diagnosis changed my life. DCIS 411 is the culmination of my on-going journey and discoveries.
This entry was posted in Health, Options, Overdiagnosis & Overtreatment, Personal Stories, Sanity, Support and tagged , , , , , , , , , , . Bookmark the permalink.

9 Responses to DCIS is NOT Breast Cancer — An Online Support Group Leading a Paradigm Shift

  1. Marie Alm says:

    Count me in, Sweetheart! What a horrible experience for you. I am now in Active Surveillance (AS). Last spring for 6 weeks I was terrified almost out of my mind. I could find no help or support. I’m single, no kids, no immediate family interested. I rejected the first two opinions. The third opinion was given to me with a completely opposite approach. All imagery showed the same thing. — My first career was as an RN, mainly in ICU cardio, so I experienced a long time inside hospitals! My opinion is that each woman must be given all the information, all the options, not sugar coated but also not unnecessarily frightening, and let her decide her path. For me, AS is where I’m comfortable. And I am thrilled to receive your email just today with a link to your article above. Dinner and chores were immediately put on hold while I read your entire article and ordered the two books Overdiagnosed and Overtreated. Overdiagnosed is now on my iPhone as an audio book! — Thank-you so much for persevering and creating this group!!

    Like

    • Donna Pinto says:

      Wonderful Marie! Thank you for sharing your insights. There is great love and support for you on this journey. Sending you a big hug ❤️ Donna

      Like

      • Marie Alm says:

        Thank-you. My very first reaction to your article was “OMG, there is a support group at last!” I knew there had to be others like me but I couldn’t find anyone. I thought about starting a support group but haven’t done it yet and now I don’t have to. I’m joining yours. — I live near Denver.

        Like

      • Donna Pinto says:

        I look forward to connecting and supporting one another. The group has some amazing women!

        Like

  2. Marie Alm says:

    I just turned 69 years old so am at the far end of the demographic for this.

    Like

  3. Marie Alm says:

    And I just turned 69 years old. So, I’m at the far end of the demographic for this.

    Like

  4. Janice Price says:

    Xxx

    Like

  5. penelope246 says:

    So glad I found this group. The information I read about DCIS puts me on an emotional rollercoaster! When I was diagnosed 2021, stage 0, intermediate grade, very small area, no lymph node involvement…I was rushed into lumpectomy. The doctors I worked with all said definitely do radiation! No one offered me the Oncotype test- I found out about it myself. I requested it..score came back low for reoccurrence. I was put on Anastrozole 1 mg. No side effects but I even question that.

    Like

  6. Cheryl says:

    Thanks for sharing your story. I am wondering if anyone knows how DCIS can be differentiated from Invasive Ductal Carcinoma, from a biopsy, since the biopsy only samples the tumour and not the surrounding tissue? I ask because I was told the biopsy would tell me which kind of BC I have. I was then told it’s IDC but I need more tests done to see if it responds to hormones, and those labs will be done on the lump, after the lumpectomy. That tells me that the biopsy hasn’t really told me anything yet – unless the biopsy can identify whether it’s IDC or DCIS. I’m still undecided on surgery, and have an appointment with the surgeon in a couple of days.

    Like

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