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).”
“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
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.
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:
- My Doctor Told Me: “Your Breast is Like Spoiled Soup… It’s Not Worth Saving.” Ten Years Later — Evidence I Proved Her Wrong
- DCIS is NOT a “Ticking Time Bomb” — What Women Really Need to Know
- Active Surveillance P L U S — Donna’s Vision
- Listen to My Phone Consultation with Dr. Michael Lagios
- A New Bio-marker Test for DCIS = Peace of Mind for Thousands of Women
- My Choice for NO RADIATION & NO MORE MAMMOGRAMS
- Bye-Bye Mammograms: Hello SonoCiné Ultrasound
- Donna’s Journey
- Holistic Health
- Proactive Breast Health Club
- recipes for wellness
- An Angel Called Adriana
- Media (some videos below, but many more at this link)
Video I made in October 2015 for event: “Beyond Breast Cancer Awareness — What Every Woman Needs to Know”: