What’s FEAR got to do with it? My 13-year Update after DCIS (Over) Diagnosis

by Donna Pinto

It all started with a call back from a mammogram in August 2009 and recommendation for a biopsy.

I had a core needle biopsy in October, and received a phone call that I needed to schedule a consultation with a breast surgeon to discuss the results.

I met with the breast surgeon in November. She said atypical cells were found, and she needed to get a bigger sample via a wide excision to rule out any cancer. It was all so casual. She said I could wait until after the holidays. 

On Jan 12, 2010, I had a wide excision (surgical biopsy — which I later learned is essentially the same operation as a lumpectomy, but there is no lump). I didn’t even tell anyone as it seemed like no big deal. A week later, I had a consultation with a nurse to get the results: 

“You’ve been upstaged to Ductal Carcinoma in Situ (DCIS).” 

treatment-options_hand

“Although it is considered pre-cancer, we treat it as if it is CANCER.”  She quickly sketched out a picture and continued… 

“Here are your treatment options”:  

Partial mastectomy and 7 weeks of daily radiation 

OR

Mastectomy.  

Total shock is an understatement.

I could not wrap my mind around the whole thing. Something didn’t feel right. 

That evening I decided to send an email to all my friends and family.  Subject line: Good news/bad news.  I explained the bad news first — I was diagnosed with DCIS, but the good news — it was “stage zero” — “pre-cancer,” and treatable with very positive outcomes. I revealed what I was told were my treatment options.

Soul sisters united in health and healing FROM THE INSIDE OUT! Adriana & Donna August 2010

The next day, I received a call from my dear friend Adriana, who is a holistic-minded nutritionist. With her Colombian accent, Adriana insisted, “no-no-no…. you mustn’t do these invasive treatments. You must come see me immediately.”

Adriana gave me a crash course in detoxification, alkalizing the body, organic foods and products, herbs and supplements, and the body’s ability to heal when given the right environment and resources. She spent hours talking with me about cancer — from a cellular perspective — and she assured me that DCIS was NOT invasive cancer and NOTHING to be in FEAR of. From her perspective, it was the FEAR that was the worst part of a DCIS diagnosis. Adriana told me: any decision made from FEAR was not a good decision. She continually reminded me to stay calm, breathe deeply, and investigate. And I did just that. She also told me to put off my MRI for one month and all will be clear. 

One month later, nothing was seen on my MRI.

I was emboldened to refuse all the treatments and instead I chose to take an approach I refer to as  “active surveillance plus” (periodic scans plus an intense focus on body-mind-spirit holistic health).

Despite being in uncharted territory and essentially on my own, I was in the best shape, and healthier than I had ever been in my entire life.

Eighteen months later (June 2011), a mammogram again rang the alarm bell

The fear was amped up by the radiologist who rated my mammogram BIRADS 5 — “highly suspicious for malignancy.” Biopsy urgently recommended.

When I met with the breast surgeon again, she told me there was a good chance it was now INVASIVE. Another problem was there were now two areas of calcifications and they were 4cm apart. Mastectomy would be the best option, she said. A second surgical opinion concurred.

I was not convinced.

I spent the next month doing a ton of research (while on vacation visiting family on the East Coast). I had a phone consultation with my Naturopathic Dr., and she recommended first getting an MRI. She also preferred an open (surgical biopsy) rather than a needle biopsy for the one highly suspicious area, while leaving the other area of “indefinite” calcifications alone (not even a needle biopsy). We agreed with this as my past experience had shown me (and research back this up) that there is a high possibility of “underestimation” of DCIS or worse — INVASIVE cancer — with just a needle biopsy.

Three more months passed before I had an MRI (September 2011). 

The results: BIRADS 4 — “suspicious for malignancy.” INVASIVE cancer could not rule out. Biopsy recommended.

This was an extremely scary time for my husband Glenn and me as we had two young children. Glenn was changing jobs and insurance, and the threat of INVASIVE cancer was now very real.

I had contemplated my situation and researched nonstop before choosing to do the surgical removal of the highly suspicious area. I was not warned ahead of time, but I came to learn (again from my own experience, and then researching the topic of re-excision rates for DCIS), that it was actually quite common to have positive or close margins with lumpectomies for DCIS. And thus the reason many women end up with a mastectomy after 1 , 2 or even 3 breast-conserving surgeries.

So I came to learn first-hand — women with DCIS (a risk factor/ not cancer) — may end up with more surgeries than women with stage 1, 2, or 3 INVASIVE cancer. This is a pathetic and horrific reality for many, including me.

Why and how can this be? 

DCIS does not often present as a solid tumor.

Calcifications are seen on mammograms which look like white specs of salt. These calcifications are an indicator, but the actual DCIS may not be clearly marked by calcifications. This was the case for me.

Positive (Bad) Margins

A few days after I had the surgery, I got a phone call from the nurse. She said, “Good news Donna — “No INVASIVE cancer… but, there are two positive margins. We need to get you back in for a re-excision to get clean margins.”

I was really frustrated at this point, but I reluctantly agreed to a 2nd surgery. I wanted to be done with it once and for all and move on with my life.

Ugh. I was really frustrated at this point. It had been nearly two years of an active surveillance (plus holistic health) strategy that I now assumed did not work. Again I contemplated what to do. Reluctantly, I agreed to a 2nd surgery as I was ready to be done with it once and for all and move on with my life.

And then another failed surgery!! Three strikes — You’re out

To my dismay, the re-excision (October 2011) was just another unsuccessful procedure along my two year journey. One close margin remained — and several doctors said there is likely more DCIS in my breast. Cutting pieces away was unlikely to work — and mastectomy was my best option. 

It had been 2 years and 4 chunks of tissue removed from my breast (all to see if it was INVASIVE cancer, which it NEVER was):  

  • core needle biopsy (Oct 2009)
  • wide excision (surgical) biopsy, (Jan 2010)

****  21 months of surveillance plus holistic health strategies (Jan 2010-Sept 2011) ****

  • lumpectomy (Sept 2011)
  • re-excision (Oct 2011)

I had more surgeries than most women with INVASIVE cancer, yet I was back at square one with the same awful statistics — and pressures to do more, more, more!

When I said no to mastectomy or another surgery, my doctor said, “Don’t be stupid Donna, at least do three weeks of radiation.”

After several more opinions and consultations with various experts over the next few months, and endless hours of non-stop research, I was certain I was making the right choice for me:

No more surgery. No radiation. No tamoxifen.  No more mammograms.

Despite the doom and gloom — statistics from doctors and pressures for very aggressive life-altering treatments…

All the FEAR was now completed gone. 

It felt like I had broken free from an abusive relationship with a health-care system that I had given so many chances.

I was done with the disease-mongering I felt from oncologists, radiologists and breast surgeons, and now I was officially on my own. I wanted nothing more than to warn others about the cascade of scary events that can happen with mammography screening for breast cancer.

I was highly motivated to create DCIS 411.

I learned more than most ever learn about DCIS — even the so-called experts. While I had taken a path into uncharted territory, I was no longer naive. I was now an educated health-care consumer. I spent so much time on my computer researching about DCIS and over-diagnosis over the course of two years, my eyesight got affected, and I needed reading glasses.

I felt astonished by what I learned (that most women are totally unaware of as I was before my research):

  • the world-wide epidemic of DCIS over-diagnosis and over-treatment
  • imaging with mammograms and MRI is inconclusive and inaccurate (to rule out INVASIVE cancer)
  • lumpectomy or beast-conserving surgeries often fail for DCIS (leaving positive or close margins)

Understanding this from my personal experience combined with endless hours of research indicated these issues were common. This gave me the motivation and passion to seek out and advocate for better, safer, less aggressive ways forward. 

I completely understand why most women and their loved ones are initially so frightened and filled with anxiety after a DCIS diagnosis, and why the majority want it over and done with as quickly as possible. But, I found a better, slower, more enlightened way.

The root of fear is in the unknown/uncertainty. Peace after DCIS is possible with the right education.

Peace came to me (and fear dropped away) after taking a long time to understand and analyze:

  • my particular type of DCIS (individualized, precision medicine via pathology and bio-markers)
  • pathology is often incorrect (need for 2nd expert unbiased opinion)
  • lumpectomies have a high rate of bad margins (need for re-excision)
  • imaging inaccuracy and potential short and long-term harms (mammograms and MRI)
  • “standard of care” is one-size-fits-all (outdated)
  • provider and insurance resistance to new bio-marker tests/ alternative imaging (antiquated health-care system, not patient-centered)
  • lack of understanding and poor communication from health-care providers about over-diagnosis and over-treatment (unconscionable)

Naysayers might say I was playing Russian Roulette.  I knew I was highly informed and proactive.

I sought out 2nd, 3rd and 4th expert opinions. I learned that pathology is wrong 25% of the time. In my case, I had 4 differing pathology reports. 

Actions I took: I requested a new bio-marker test. I consulted with naturopathic, integrative, and holistic-minded practitioners. I researched alternative cancer protocols. I found support (despite feeling alone in the beginning). I read a ton of articles, studies, and books. I watched loads of videos. I studied nutrition and “food as medicine.”

I documenting everything I learned and experienced on my websites so others could learn from my research and insights. I created support groups for like-minded women.

How to know who and what to believe and trust?  

There is a reason we have a gut feeling and intuition. Mine became stronger as time went on. I stopped being affected by outside voices and naysayers. While there were no studies of women taking the path I was on, I did not second guess myself. Time and experience showed me… we are each a unique study of one. We do the best we can with the knowledge we have. As Maya Angelou said:

When we know better, we do better.

I choose to not live in fear of cancer — or anything else.

When you understand how FEAR is being used by corporations, non-profit organizations, the media, health-care providers, celebrity spokespeople, and even well-intentioned loved ones, it no longer has any effect.

To read more about my story, alleviating fear, understanding over-diagnosis, and taking a holistic pro-active approach to breast and overall health, please see:

WJLA Interview 2017

Is Stage Zero breast cancer really cancer? 7 ON YOUR SIDE investigates the controversy

Video I made in October 2015 for event: “Beyond Breast Cancer Awareness — What Every Woman Needs to Know”:

INSIDE EDITION Interview
KPBS Interview
ABC Interview

10 thoughts on “What’s FEAR got to do with it? My 13-year Update after DCIS (Over) Diagnosis”

  1. Lesley Kennedy said:

    Hi Donna
    I was diagnosed with “High grade” DCIS on the 5th September 2013 and 12 days later they had me scheduled for the surgery to remove my right breast. I am only 46 years old. Thankfully for me I am following a different path to health and healing. A very similar path to yourself. The mind and body play a major part and that is the road I am taking.

    I live in Australia and I can’t tell you how wonderful it is to read your website it provides me with some reassurance that what I am undertaking is the right path. We can only make these decision ourselves even if those around us don’t support us. But that is also part of the healing process you discard negative people in your life to be able to heal and make a better life for yourself. When the doctor say’s you have “C” you think of FEAR, but hey don’t good things come out of hardship. I am blessed that I have been given this, so I can reflect on my life at a very inner level.

    Do you have any stories or contacts of people in Australia that haven’t taken the radical steps of surgery for DCIS.

    Stay happy and healthy you look radiant and I know I will too, very soon. Take CARE..

    Regards Lesley

    • Hi Lesley,
      Thanks so much for your kind words and for sharing your story a bit here. One of the goals of this site is to add more stories of those taking a more holistic, less aggressive path for DCIS treatment so that we may all learn from one another. I do not know of anyone in Australia who I could put you in touch with, but by you posting your inquiry here, someone may turn up. I will keep you in mind should I come across others in Australia “on the path.” Please keep in touch and feel free to ask any questions you may have. Blessings of health and peace, Donna

  2. Hi Donna,

    How are you doing now? Did you go for lumpectomy in 2010?
    I was diagnosed with DCIS -stage zero last year and had Lumpectomy. with no other treatment.
    Last week I went for yearly mammography and there is a small mass close to my DCIS. I am going for biopsy again next week. Just confused with what to do?

    Thank you.

    • Hi there,
      You may want to request and MRI or an automated whole breast ultrasound before biopsy. That’s what I would do. Let me know if you do have the biopsy and what the results are and I can help give some insights, resources and support.

      I am doing great. You can read more of my story at http://www.DCIS411.com. I will be posting an update soon, so best to “follow” my blog or “like” my page on Facebook for latest posts and updates.

      Much love and light,
      Donna

      Blessings

      • Hello Donna,

        Thank you very much for your reply. Result of my second biopsy was not good. Now I have invasive DCIS stage I with only ER +. I went for second opinion with Dr.Lagios and he agrees with my both biopsy results. I had second Lumpectomy with sentinel lymph node biopsy in Dec. Out of nine margins removed; DCIS was seen in two margins and lymph nodes were negative. After this I had MRI done and no suspicious enhancement was seen. My oncologist have requested MammaPrint test. Have not received results back yet.

        Now my treatment plan (from my Surgeon, Oncologist and radiologist)
        1. Remove more margins and 3 weeks of radiation.
        2.. If I decide not to remove more margin and not go through third lumpectomy then four weeks of radiation
        3. Plus Five years of hormone therapy.

        I am confused between 1 and 2 (What to do) and over all is this the right treatment I need?

        Have you come across any one like this through your website?

        Any suggestions will appreciated.

        I do follow you on Twitter.

        Thank you for your time and help,

        NG

  3. Jodi Rudick said:

    Hello, I am 51 and was diagnosed with stage zero DCIS, intermediate grade. I have had two opinions resulting the same answer. I also had a mammogram, ultrasound, a biopsy and then an excision biopsy. I have two areas of large calcifications and doctor not sure if got it all out due to the closeness to the nipple. This whole thing started since I was bleeding from the nipple. Now it is recommended to get a mastectomy since it is such a large area. I can’t seem to find any suggestions or people with my similar situation. any input is appreciated. thank you, Jodi

    • Hi Jodi, are you a member of on the Alternative DCIS Facebook group? Angela had a bleeding nipple (papiloma) and high grade DCIS. She had papiloma removed surgically but did all natural protocol for the high grade DCIS and it shrunk away over the last 3 years. Here is the link to join and pose your question: https://www.facebook.com/groups/548606558617827/
      Mastectomy is radical for DCIS. I would suggest a dedicated breast MRI.
      Blessings, Donna

      • Thank you for your response. I’m so torn on what to do. I don’t think I can do the mri since I can’t tolerate the dye. I’m getting genetic testing done. I was told since I have so much calcification it’s hard to save the breast. I’m healthy and follow alternative lifestyle and work with a functional doctor and functional alternative oncologist following anti cancer diet. Still have the intermediate DCIS. I joined the Facebook group you suggested. Thanks.

      • Jodi, where do you live? I would advise a 2nd opinion on pathology and also seek another opinion from a surgeon. You have time. Intermediate DCIS is not life-threatening!! Do not let doctors scare you or pressure you! Are you having the Oncotype for DCIS test done?

      • Donna,
        I live in Maryland. I met with two surgeons at two separate hospitals. They both advised the same thing. All of my tests showed DCIS. My sister had a rare skin cancer that apparently correlated to higher risk of breast cancer in family. Cancer does run in my family, but not breast cancer. Interesting to see the results of genetic testing. I plan to ask for the oncotype test and braca done.

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