Overdiagnosis – “That’s Not Even a Word”

I remember in 2012, when I first came across the term “overdiagnosis,” I told my dad that I felt this is what had happened to me. His reply to me was: “Donna that’s not even a word.”

I said, “Dad, this is an actual thing — I didn’t make it up.” I tried to explain…

A study titled Effect of Three Decades of Screening Mammography on Breast-Cancer Incidence in the New England Journal of Medicine stated this conclusion: 

Despite substantial increases in the number of cases of early-stage breast cancer detected, screening mammography has only marginally reduced the rate at which women present with advanced cancer. Although it is not certain which women have been affected, the imbalance suggests that there is substantial overdiagnosis, accounting for nearly a third of all newly diagnosed breast cancers, and that screening is having, at best, only a small effect on the rate of death from breast cancer.

There was also an article in The NY Times, Cancer Survivor or Victim of Overdiagnosis?

This resonated 100% with what my instincts were telling me. I became obsessed with trying to figure out if my experience fit the definition of overdiagnosis and overtreatment.

Overdiagnosis is not something an individual can easily know as it takes many years of follow-up before anyone can be confident that they did not benefit from the diagnosis or need any of the recommended treatments.

After several years, I was convinced — I was in fact a survivor, not of cancer — but of overdiagnosis and overtreatment. I did not identify with “survivors” of breast cancer. I felt a mammogram did not save my life. It actually harmed my life. 

Not a Popular Sentiment 

I was stunned by the way I was treated for speaking out about my concerns and the research pointing to mammography screening as the main culprit of a three-decade epidemic of breast cancer overdiagnosis. And, not only were women potentially mis-labeled with “cancer,” with all the anxiety and fear a cancer diagnosis brings, the majority of women potentially overdiagnosed were almost always overtreated.

Yet most women remained unaware. Thousands of women annually were rushed into aggressive “cancer” treatments that actually provided little or no benefit. Yet the harms of the treatments could be quite severe. This bothered me, and I felt compelled to write and speak about what I had discovered.

Sharing about Mammography Harms Was Heresy

To my astonishment, I was shunned from the biggest online DCIS support group for sharing articles on the topic. I was told I could not share links to my new website (DCIS 411). This was so disappointing as I had spent countless hours of my own time voluntarily creating an informational website (highlighting the science about DCIS overdiagnosis and overtreatment) with the goal of helping to better inform and educate women.

Despite being outcast and discriminated against, I felt more inspired than ever. I decided to create new and unique support groups inviting people to openly discuss and share experiences and resources regarding potential overdiagnosis and overtreatment.

I intentionally did not ever monetize my website, despite my father and my husband urging me to, especially as my story was getting a lot of media attention. (See Media.)

Research Focused on Reducing DCIS Overtreatment

Since 2016, I have been involved as a Patient Advocate with two major research projects (COMET and PRECISION). This groundbreaking research is focused on reducing overtreatment and providing evidence to support “active monitoring” as a safe and smart approach for low-risk DCIS. 

While I feel this research is extremely important, it logically makes sense to find ways to mitigate it’s pre-cursor — overdiagnosis — as the label of “cancer” itself brings unnecessary anxiety as well as unnecessary cancer treatments.

In my opinion, the best way to avoid overtreatment is to understand and avoid overdiagnosis. But, is it even possible to avoid breast cancer overdiagnosis?

A Remarkable Conference Focused on “Preventing Overdiagnosis” 

I was honored when Dr. Eddy Lang, the lead organizer of the Preventing Overdiagnosis Conference (PODC) reached out to me in 2020 and asked if I would like to join their Planning Committee. Each zoom meeting left me with so much gratitude as I got to know extraordinary researchers and physicians who truly care about finding solutions to overdiagnosis.

Dr. Laura Esserman

Two of my personal heroes gave awesome-as-ever presentations — Dr. Laura Esserman & Dr. Shelley Hwang. I have been following and amplifying their work for many years. (See my blog post Esserman & Hwang: TIME’s Top 100 — (And My Top 10!))

“I Found My People”

Shelley Hwang, MD, Chief of Breast Surgery, Duke Cancer Institute

Dr. Shelly Hwang started her presentation by expressing her sentiments upon attending her inaugural PODC conference years ago.

I smiled when she said, “I found my people.” 

All of the excellent Keynote Speakers I heard were captivating. I too feel I have found my people.

An Excellent Idea — Tell Patient Stories of Overdiagnosis 

Dr. Mette Kalager, a breast cancer surgeon at Telemark Hospital and Oslo University Hospital, Norway. From 2004 to 2006, Dr Kalager was the head of the Norwegian Breast Cancer Screening Program

Dr. Mette Kalager mentioned a new study just published in the BMJ by Australian researchers featuring interviews to explore experiences of women who identified themselves as having a possible breast cancer overdiagnosis. 

Effects of awareness of breast cancer overdiagnosis among women with screen- detected or incidentally found breast cancer: a qualitative interview study

“Our study shows how learning about overdiagnosis after a breast cancer diagnosis profoundly impacted these women’s sense of self, interactions with medical professionals, and for some, deep remorse about past decisions and actions. Many were uncomfortable with being treated as a cancer patient when they did not feel ‘diseased’ and being recommended treatments that seemed excessive in comparison to the diagnosis given. Some felt anger that critical information was not easily forthcoming and feeling they had not been given a complete picture of overdiagnosis before having screening mammography; and some were frustrated about how difficult it was to connect with medical professionals and others in their social network about overdiagnosis and overtreatment being a possibility. The findings high-light the loneliness of this experience, with little support or reassurance available to the women interviewed in this study. By describing the experience of women who independently self-identify as having a potentially overdiagnosed cancer, this study—which exemplifies the psychosocial harms of learning about overdiagnosis after a breast cancer diagnosis—makes an important contribution to the literature and to clinical practice. The sample also included several women who were more concerned by their recommended treatment which they perceived as overtreatment, rather than whether their cancer was ‘overdiagnosed.’”

Sharing Personal Experiences about Overdiagnosis is Healing

I know from the many women who have thanked me over the last 12 years, sharing my experiences, insights and resources has helped tremendously. Countless women have become friends – some even feel like family. It is extremely fulfilling watching women (and their loved ones) who are initially frightened out-of-their-minds become confident and empowered in their health and life choices. My hope is to inspire more women to share their stories for their own healing as well as to inspire more compassion from the medical community, advocacy groups, and the media. Our voices need to be heard. Please contact me if you would like to share your story by writing a guest blog post.

This Post is Dedicated to My Mom and Dad — My Greatest Cheerleaders 

June 10, 1978 — Donna’s Bat Mitzvah with parents Gary and Maxine

My father Gary was “following” my blog during October 2019 when I took on the challenge to publish a blog post every day during Breast Cancer Awareness Month. I wrote 31 blog posts in 31 days. My dad may have been one of the few who was reading every single one. He called me up super excited with ideas. He insisted I monetize my website now and also do a fundraiser so I could spread the word in a bigger way. He suggested I use the money to buy billboard ads and get even stronger with my message. 

Ironically, a few weeks later, my dad died unexpectedly on Thanksgiving. 

My mother Maxine was also a super fan of my work from when I first shared my website with her in 2011. Sadly in 2017 she became debilitated from the side effects of prescribed medications for depression, anxiety and insomnia.

One of the highlights of the recent Preventing Overdiagnosis Conference was a film screening of a documentary called “Medicating Normal.” Many of the people interviewed described horrendous withdrawal symptoms that led to severe physical pain and even suicidal ideation. I witnessed this very thing happen to my mother. Yet, despite good insurance and the best doctors, she could find no relief. 

The Medicating Normal website provides ways to see the film as well as important resources such as safe withdrawal. I wish we had found this information earlier.

Ten Years Later — Overdiagnosis — It’s an Official Word

Rose and Sid Blaurock — Best grandparents ever!

I believe both my parents are somewhere watching over together along with my grandparents Rose and Sid — and they are all “kveling” (Yiddish expression for gushing with pride) — as I write this update on overdiagnosis.

That word that my dad said, “That’s not even a word,” in 2012… is now officially a word that has been added to the US National Library of Medicine (NLM) to be included in the medical subject headings (MeSH):

Overdiagnosis

“The labeling of a person with a disease or abnormal condition that would not have caused the person harm if left undiscovered, creating new diagnoses by medicalizing ordinary life experiences, or expanding existing diagnoses by lowering thresholds or widening criteria without evidence of improved outcomes. Individuals derive no clinical benefit from overdiagnosis, although they may experience physical, psychological, or financial harm.”

Link to full article https://www.bmj.com/content/375/bmj.n2854

I hope you will join me in continuing this important conversation!

Donna Pinto

Twitter: @DCIS411 

Facebook Groups: DCIS Overdiagnosis and Overtreatment

DCIS – Is Not Breast Cancer!

Donna’s Choice: Global Healing From the Inside Out

Email: dp4peace@yahoo.com

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Lions, Tigers and Fears — the Cultural Problem of DCIS

There’s a hysteria around breast cancer. The extremism that sometimes comes into play in DCIS treatment decision making is a ‘cultural problem.’ This is not a life-threatening problem.”   – Dr. Anne Partridge, MD, MPH, Dana-Farber Cancer Institute

Shock + Scary Statistics + What ifs + Treatment Controversies + Confusion + Uncertainty + FEAR

Is all this necessary?

Absolutely NOT!!

I took the time to understand and analyze my particular DCIS diagnosis.

I sought out expert 2nd, 3rd and 4th opinions.

I found support from other women with similar feelings about treatment risks for DCIS.

I became empowered with information

Overcoming the FEAR of cancer initiating, progressing or recurring is truly the greatest hurdle following a diagnosis of DCIS.

Check out my “DCIS Wheel of Support” drawing I made quite a while ago…

Wishing you all peace, love and support!

Donna

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Reflections on My 12 Year DCIS Anniversary…

On this day, January 19, 2010 — 12 years ago — I was given a diagnosis that brought my happy life to a screeching halt.

I had never heard of DCIS before, but from the moment a nurse told me about the aggressive treatment protocols, I knew something was not right.

I read an article about a proposed treatment option called “active surveillance.” This emboldened me to refuse all the “standard of care” treatments.

At the same time I became fascinated with stories, books, articles and films about holistic ways to reduce cancer risk and improve health. I became a passionate student of “food as medicine” — and in 2013, I received a Certification in Nutrition.

Most importantly what I learned over the last 12 years was this:

True health is more than just high quality organic plant-based food, filtered water and daily exercise. A healthy disease-free life revolves around a mindset. It’s not something most oncologists and healthcare providers are knowledgeable about. One has to go outside of the mainstream medical box and dig deeper within themselves. I made a “Wheel of Healing” that included everything I felt was important to my health and well-being…

I understand how overwhelming it can feel in the beginning after a scary diagnosis. But I also know for sure that this can serve as a wake-up call. It did for me. And while my path is not for everyone, the journey it took me on is one that I am grateful for each and every day.

I created my website DCIS 411 in 2011 in hopes of helping even one person seeking answers and support outside of the mainstream medical box. It warms my heart to know I have made a difference in so many lives. I am truly grateful for the wonderful friendships I have developed along the way.

August 2010 with Adriana, my friend and mentor

The time I spend writing, working as a patient advocate, and sharing insights in support groups is my way of paying forward the love and wisdom I received when I was scared and in need of guidance.

I created a nonprofit called Give Wellness inspired by my friend and amazing researcher Sandie Walters who co-founded DCIS Redefined with me in 2013. Some of my Recipes for Wellness can be found here.

Over the years I have tried to simplify all the information and frequently asked questions. I created a FAQ page as well as a BREAST WELLNESS CHECKLIST and a RESOURCE CARD for women diagnosed with DCIS. Both can be downloaded…

Lastly, I always encourage people to find a like-minded tribe/support group. Links for DCIS support groups I created or am involved with can be found under Resources.

Words could never express the gratitude I feel for all that I have learned as well as all the wonderful people who have helped or supported me in one way or another over the last 12 years.

Due to the loss of both of my parents over the last two years, I have not had too much time or energy for writing blog posts or keeping up with my passion projects. One of my goals for 2022 is to work on a book as well as create short educational videos.

I hope to connect more with many of you in 2022. You can “Follow” my blog by entering your email address if you’d like to receive an email when I publish new posts. Feel free to leave a comment below, follow me on Twitter, or send me an email. My contact info is here.

With peace, love, gratitude and blessings,

Donna Pinto

January 19, 2022

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My Doctor Told Me: “Your Breast is Like Spoiled Soup… It’s Not Worth Saving.” Ten Years Later — Evidence I Proved Her Wrong

In October 2011, my doctor said to me:

“Your breast is like spoiled soup… it’s not worth saving.”

When I said I did not want to do anything further, she said,

“Don’t be stupid Donna — at least do 3 weeks of radiation.”

She had also previously said to me, “You don’t want to wait until it’s not treatable.”

10 years later, I can say with absolute certainty:

My breast was NOT “like spoiled soup.”

I was NOT “stupid.” 

WAITING was a SMART thing to do.

I did not “NEED” a mastectomy, radiation or tamoxifen (as guidelines recommended.)

I am so HAPPY and GRATEFUL I focused on NUTRITION and LIFESTYLE instead.

10 years later, I can say with absolute certainty:

My breast was “WORTH SAVING.”

I was PERFECTLY HEALTHY (and I still am!)

Breast cancer is scary — but so is OVER-DIAGNOSIS and OVER-TREATMENT

What is Overdiagnosis?

Overdiagnosis happens when people get a diagnosis they don’t need. It can happen when people without symptoms are diagnosed and then treated for a disease that won’t actually cause them any symptoms, and it can happen for people whose symptoms or life experiences are given a diagnostic label which brings them more harm than good. 

One common way overdiagnosis can happen is when healthy people who attend screening programs or receive tests during check-ups are diagnosed and subsequently treated for the early form of a disease which would never in fact have harmed them. With breast cancer screening for example, a systematic review of studies published in the British Medical Journal suggests that up to one in three of the cancers detected via screening may be overdiagnosed.”  – Preventing Overdiagnosis

“In the last few decades we’ve learned that the types of breast cancers that do not grow, or grow very slowly and do not spread, are more common than expected.1 So they would never have an impact on a woman in her lifetime. When these types of cancer are detected by breast screening mammography, this is known as ‘overdiagnosis’.” –What is breast cancer overdiagnosis? Wiser Healthcare, Australia

What is Overtreatment?

INTERNATIONAL PRECISION TEAM

“Ductal carcinoma in situ (DCIS) is a prime example of potential overtreatment. DCIS is frequently detected by screening mammography, accounting for one quarter of all breast cancers diagnosed today. DCIS is usually treated similar to invasive breast cancer with surgery, radiation and hormone-blocking medicines. Despite newer research concluding these interventions provide no difference in survival, aggressive ‘cancer’ treatments remain the “standard of care,” and many women world-wide are faced with the life-long emotional, physical and financial consequences of aggressive treatments.” – PRECISION (PREvent ductal Carcinoma ISitu Invasive Overtreatment Now)

The Psychological Harms of Overdiagnosis and Overtreatment

One of the most devastating harm of overdiagnosis is the psychological harm which is impossible to quantify. If researchers spent time in online DCIS patient support groups, they would understand the enormity of the problem. Fear and misinformation are rampant and contagious.

A DCIS diagnosis often blindsides. Most women have no symptoms. Even if it is “stage zero,” the way it is presented by health-care professionals combined with a misperception of risk and lack of understanding of cancer itself creates a perfect storm for confusion, fear, anxiety and overwhelm. Most women want to act fast. Most want to get “it” out. Many women opt for a double mastectomy.

The image of cancer spreading. Memories of loved ones suffering and dying. Rumination. Sleepless nights. Thoughts of leaving young children without their mother. Worst-case scenarios and story after story of recurrences or invasive cancer found after lumpectomy or mastectomy.

No matter how much evidence is presented to the contrary about a large majority of DCIS being “low-risk” and “non-invasive,” the tendency to fixate on the scariest words and images is hard to shake.

The reality is — the majority of women receiving a diagnosis of DCIS are more likely to be overdiagnosed than they are to be in danger of having actual invasive breast cancer in the future.

The main driver of overdiagnosis is mammography screening. If DCIS of any type is detected (even the lowest risk), doctors must follow “standard of care” guidelines, which include treatment protocols that set women up for being over-scared and over-treated.

In hindsight, I wish I had fired the surgeon who fear-mongered me far earlier.

I do feel incredibly grateful and happy I had a strong intuition that my doctor was wrong and I needed to find support elsewhere.

Instead of fearing cancer, I studied nutrition. I created DCIS 411 and made connections with like-minded women. I also set up daily google alerts and searched for information from thought-leaders who were speaking out about overdiagnosis and overtreatment of DCIS. This has always resonated with me and I have never identified with “cancer” or the fear of cancer.

I now have ten years of evidence. My instincts were right.

If you’d like to read more of my story and why I created DCIS 411, please click here.

Please share any thoughts, experiences or ideas in the “Reply box” below. 

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Sherri’s “Mind/Body” Journey — Inspiration for Women Seeking Alternatives for DCIS and Breast Cancer — Guest Blog

My Journey from Invasive Triple Negative Breast Cancer

by Sherri Shilcrat

GET ACTIVE IN YOUR OWN RESCUE 

In July 2009 I was diagnosed with breast cancer. I always love to be in control which is why I argued back and forth with the doctor informing me of that.  I felt he was wrong, but finally realized that yes this was breast cancer and where do I go from here? 

The question in my mind was not why me but, what do I do about it?  What treatments?  What therapies?  The research began. I did decide to have the lump removed which I do not regret since I got the diagnosis of invasive triple negative breast cancer.  I cannot fight something if I do not know what I am fighting. 

The first books I read were Cancer Free – Your Guide to Gentle, Non-toxic Healing and How to Cure Almost Any Cancer at Home for $5.15 a Day both from Bill Henderson.  It changed my life and way of thinking.  I recommend both of these books for everyone diagnosed with cancer.  The third book I got was Alternative Medicine Definitive Guide to Cancer.  This changed how I thought of cancer.  Cancer can be reversed – this book tells how, using clinically proven complementary and alternative therapies.   

HARD TO BUILD PEACE WHEN WE ARE IN A CONSTANT STATE OF WAR — MAKE THE MIND STRONG 

What I discovered is cancer can be described as multi-dimensional which means there are several components to a cancer diagnosis.  It isn’t just physical; it is through the brain, the mind.  Mind/body is what we all need to address.  We all need to be in charge of our brain not the other way around.  In one book a doctor noticed that success is dependent on the state of the mind of each person not necessarily the type of cancer or the stage.  If you think you will die, you will. If you think your treatment will not help, it won’t.  On the other side, if you think you will beat the diagnosis there is hope, and if you think your treatment is what you should be doing that is all you need.  Our brain programs us to think a certain way because of childhood, life experiences. This can involve stress, trauma, anxiety, and unresolved trauma.  That can be related to a cancer diagnosis, so we all need to change our mind, our thinking on a more positive level.  That is what I concentrated on.  Making the mind strong will in turn make the body healthy was my belief.  I did meditation daily, visualization daily where I visualized the cancer leaving my body, qi-gong, tai-chi, then exercising.  All done daily.  I never told myself I am working full time, I can’t do this — instead I made time with no excuses.  Meditation will make your mind strong so daily meditation was key for me.    

Now I knew the reason for my diagnosis of breast cancer and everyone needs to be aware of that.  Unresolved stress, PTSD, anxiety all finally did damage to my immune system.  So taking care of the mind is good but what would I do for the body and bringing up my immune system?  I interviewed many naturopaths to give me some type of answer and finally after weeks of trying to find out the answer it was given to me.  Vitamin C infusions.  Vitamin C infusions instead of chemotherapy which I was against in the very beginning.  In July, I had the lumpectomy, and in August, I began weekly Vitamin C infusions for 7 months.  I realized though that I needed someone that was more familiar with cancer than the naturopath and found a naturopathic oncologist that I trusted. I also availed myself to mistletoe injections which I feel helped turn the corner of my cancer.  Extensive blood work-up including hs-CRP, homocysteine, magnesium, vitamin d hydroxy, calcitriol, comprehensive metabolic panel, CBC with differential/platelet, iodine, ceruloplasmin. I also included Spectracell testing along with that to get at more nutrient levels.  Natural killer cell testing was done to show where my immune system was at, and a protocol was developed to bring that level up. Just note: we are all different, with different issues, different deficiencies so that is why in natural therapies there is personalization for everyone.   

The top issues for any cancer diagnosis — lack of sleep, unresolved stress, diet (not eating healthy) — if any of these are what you are experiencing, you need to try to resolve them.  Most people with stress cannot sleep the way they should.  We all can eat more healthy. 

Here are some common elements of supplementation — curcumin/turmeric, magnesium, vitamin d3, k2, vitamin c, alpha lipoic acid, iodine if levels are low, beta glucan. Be aware that just supplementing before having levels checked for some is not safe.  For instance iodine for some can produce hypoglycemia if you are taking too much, vitamin A, Vitamin D3, so please have levels checked first then decide how much to supplement. 

STANDING UP FOR YOURSELF DOESN’T MAKE YOU ARGUMENTATIVE. SHARING YOUR FEELINGS DOESN’T MAKE YOU OVER-SENSITIVE. AND SAYING NO DOESN’T MAKE YOU UNCARING OR SELFISH. IF SOMEONE WON’T RESPECT YOUR NEEDS, FEELINGS AND BOUNDARIES, THE PROBLEM ISN’T YOU — IT IS THEM. 

LIVE IN THE MOMENT— NOT THE PAST, NOT THE FUTURE, BUT NOW AND SHOW GRATITUDE FOR YOUR LIFEthe perfect recipe for success in treatment of breast cancer. 

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Breast Imaging Options and Anti-Cancer Diet / Lifestyle

Ultrasound vs Mammogram Discussion on Good Morning America:

Identical twin sisters — both had clear mammograms — yet both had INVASIVE cancers that were found on ULTRASOUND. INVASIVE cancers were missed on their mammograms!! A 2009 Study showed ULTRASOUND found 97% of cancers vs 76% found on mammograms. Watch video:

https://www.goodmorningamerica.com/video/embed/73446936

“The mammogram did not detect my tumor, but the ULTRASOUND did.” – Robin Roberts

“Yeah, the mammogram found one of my tumors, but didn’t find the 2nd one.” – Amy Robach

Sadly…Mammograms miss 40% of INVASIVE CANCER…

Options for Breast Imaging:

Read: Bye-Bye Mammograms: Hello SonoCiné Ultrasound

Learn about breast density — one of the strongest predictors of the failure of mammography screening to detect cancer. Visit Are You Dense?

Review studies on Mammograms, Ultrasound, MRI and Thermography: Imaging and Monitoring

Please watch videos and be an informed consumer BEFORE choosing to screen or not: #Be W I S E: Breast Cancer Screening

“Anti-Cancer” Diet & Lifestyle Matters

I have been researching and writing on this topic for over ten years! More studies are needed for women who want to reduce breast cancer risk with diet & lifestyle:

Active Surveillance P L U S — Donna’s Vision

Reducing Stress May be Your Best Rx

Donna’s Official “Better-than-Awareness” Checklist

Please share your stories or comments below.

Cheers to peace, love, light, truth and health!

Donna Pinto

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Awesome Interview!! Inspiration for DCIS 411 — Informed Choices and Healthy Living Over Fear Fear Fear!

I love this interview!! Such insightful questions from Cynthia Toussaint — a true kindred spirit.

We discuss how we both KNEW IN OUR GUT something wasn’t right with the immediate rush to surgically remove DCIS!

We also share how a holistic lifestyle and diet made a transformational impact in our lives.

Please listen, comment or ask questions below (where it says “Leave a Reply”), and share share share if you feel inspired:

Donna Pinto and son Cody, age 18, Sept 4, 2020

I hope to connect with you on social media this October (Breast Cancer Awareness Month)!!

I’m wearing RED, ORANGE or YELLOW to represent TRUTH, LOVE, LIGHT, PEACE & HEALTH!

Twitter: @dcis411

Facebook:

“Follow” this blog and receive an email whenever a new post is published!

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“When is Cancer Not Really Cancer?” — Update from PRECISION (PREvent ductal Carcinoma In Situ Invasive Overtreatment Now)

“PRECISION aims to enable patients and clinicians to make informed, biology-based decisions to avoid unnecessary and burdensome treatment of indolent DCIS. The answer can only be found by synergistic collaboration between leading scientists, clinicians and patient advocates.

– Prof. Dr. Jelle Wesseling, Senior Group Leader, The Netherlands Cancer Institute, Amsterdam; Professor of Breast Pathology, Leiden University Medical Center, Leiden, The Netherlands

There is a wide spectrum of DCIS ranging from low to high risk. “Low-risk” means it is more likely to be harmless and not progress to invasive breast cancer. “Low-risk” includes low and intermediate grades (1 and 2), as well as other physical and biological features which have a low potential for progression to a future invasive cancer. “Low-risk” DCIS differs greatly from “high-risk” DCIS which some research has shown to be faster growing and more closely associated with a future invasive breast cancer.”

PRECISION Patient Advocates

Click the link below to read about this “Grand Challenge” project as well as the important role of Patient Advocates:

PRECISION Newsletter

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Mis-Diagnosed with DCIS at Age 26 and 38 Weeks Pregnant: How Intuition, Non-stop Research and a 2nd Pathology Opinion Changed My Life

Guest blog by Courtney Organ

Four years ago I had a very traumatic event happen to me. I was 38 weeks pregnant and 26 years old. At the time, I shared nothing on social media due to the fact I felt I was in a horror movie — being pregnant with my second child and getting diagnosed with a very serious disease.   

I had “survivors guilt” — I felt my story wasn’t worthy enough to share because of so many I know who have suffered. But, not a day goes by I don’t think about what happened to me and how I can help prevent this from happening to others.

I do believe I was given a second chance. After learning what I have found out after countless hours of research, something just didn’t feel right to me.

My intuition kept saying, there’s no way… this isn’t real… this can’t be happening… I’m healthy… I’m creating a life….You are about to give birth, and also facing mortality?

I knew NOTHING about cancer at this time of my life. I felt invincible. Facing life and death was the most terrifying thing I’ve ever felt. It shook to me to my core. 

I understand cancer comes in many stages and that my situation will not even compare to those truly suffering and those who have lost loved ones from this devastating and heartbreaking disease. Everyone has a different story and I wanted to share mine… 

I found a lump when I was a few months into my pregnancy.

I thought it was just pregnancy-related hormone changes — a clogged milk duct or something. I was working a ton and trying to balance life with a 2 year old. It wasn’t until I was 6 months pregnant that I brought this up to my obstetrician. I asked her what she thought and she seemed shocked I hadn’t mentioned it before. She said I needed to get an ultrasound immediately, and she also recommended I see a breast surgeon to get a biopsy. 

I was immediately frightened. I thought: Could this be something more serious? Couldn’t be — no way — I’m 26 years old. 

I got the ultrasound and the results came back literally the night before I left for a trip to Chicago to see family and friends. My obstetrician had said I had a tumor – it was not a cyst, so she definitely wanted me to see a breast surgeon.

While this was scary, I went ahead on my trip thinking it is going to take time to get authorization from insurance — which it did. I had a great time in Chicago and didn’t think about it much because we all truly thought this was benign – even my obstetrician.  

I went to see what I thought was a breast surgeon, but he was actually a general surgeon. He said we need to do a core biopsy.  This was his 1st week on the job and he said he didn’t even know how the process worked in terms of getting a biopsy.  He left the room and said, “I just have to see where we’ll send you to get this done.”

I was like, okay. I’m sure I’ll get a call from them in a couple of days.

Not. They gave me the run-around in every possible way. They had a radiologist from a another place look at my imaging and their findings recommended an MRI. Well, when your pregnant you can’t get an MRI with contrast. So they said, we’ll do an MRI without contrast. I was waiting for 2-3 weeks to hear back from them and nothing came along and I was persistent calling every day. Finally they said no you can’t do an MRI — you have to wait until your done with your pregnancy; let’s do an ultrasound guided biopsy. I said okay, let’s do it — when can we book it?   They said they’d call me to schedule.

I kept calling because no one called me. The lady at the front desk told me “Courtney we can’t do your biopsy here because the surgeon doesn’t think you are able to do that pregnant with anesthesia.”

Woah woah woah… the surgeon never said anything to me about that. What is going on? Why has no one called me? He had told me anesthesia wouldn’t be a problem. I said, “Have the surgeon call me immediately.”

The surgeon called and apologized. He said, “Courtney I don’t know why the front desk girls said that as they don’t know what has been talked about.” I thought this was so unorganized and just awful. Then the woman handling scheduling said they decided they’d send me to a breast center in Palm Springs because this was out of their hands.

Confusing as heck. Why am I not being told what’s going on? Why isn’t this being talked about with their team?

It was like there was no team involved. The woman I spoke with on the phone said, “The surgeon thinks it’s benign so don’t worry, just focus on your baby, and enjoy this time.” Okay, I guess I had some reassurance then. 

Weeks passed and I still didn’t get my biopsy. I went into the breast center myself (completely different area) with all my ultrasound images, 37 weeks pregnant mind you, and said to this woman “I need to get this biopsied. Please have someone contact me ASAP. I want to breast feed and I don’t want to be doing this post partum if it’s nothing.” I really had to express emotion as if I was desperate. Persistence was a big strength thus far.

The tech said, “We’ll look at your images right away, and call you. You may be too late in your pregnancy, but I’ll find out with the radiologist and call you tomorrow.” 

I felt good about that. I thought, ok, finally someone gave me some sort of promising news that they’d at least get back to me. 

They called and scheduled me the next week for an ultrasound guided core biopsy.  This is almost 2 months after my first initial ultrasound. Not ok.

I went in to do the ultrasound and the radiologist still couldn’t tell what this tumor was. I had to have a biopsy for sure. As soon as he started the biopsy, I started crying. Something about a needle going into your body scared the heck out of me. I thought…

What if this was something and I have to fight for my life? What if I can’t see my Charlie grow up?

He said it looked like some cells going on, but really truly he thought it was benign. Everyone thought it was benign. He even said it was benign after he took the biopsy. They said to come back the next day.

I went back and was scared shitless. I actually waited in the waiting room for 1.5 hours before my results to see if they could get me in early.  As I was waiting I read about possibilities of breast cancer in your 20s. An article came up about a girl that had a chemo baby and her baby was bald. I was freaked out. At that moment my heart was pumping and my nerves felt like they were going to blow up. I will never forget this feeling.

After they finally put me in a room, four doctors and techs came in and said:

“Courtney, we found something. You have low grade ductal carcinoma in situ and you need a consultation with a breast surgeon.  Here is a booklet on breast cancer. Good news is we caught it early.  Do you have anyone with you today?” 

I was speechless. I started to cry and then I couldn’t breathe. WHAT!!!! Breast cancer? What? Why? How? What do you mean? At my age? What does this mean? 

They couldn’t give me any answers. This is what I found out as my first impression of a radiologist. They take your tissue and say goodbye. Thanks a lot. I’m young, pregnant, and I have a 3 year old. Give me some answers and NOW!!!! 

Nothing was said and I went on my way in shock.

I was balling my eyes out. I went straight to the bathroom and couldn’t breathe. I had this baby inside of me and couldn’t breathe.

I didn’t bring anyone with me because again I assumed this was nothing, not me — no way, I’m pregnant, this would be so rare, I’m invincible right? So many thoughts. 

I called my husband Jason. I said, “I have breast cancer.”

Jason left work immediately and met me at home straight away. On my way home my obstetrician called me. She received the biopsy report and said come to my office ASAP. It was a Friday afternoon and she doesn’t even work on Fridays. 

Before I even got there she had talked to a breast surgeon who she proposed was very good for me to see. Jason and I asked so many questions and I HAD NEVER CRIED SO HARD. She couldn’t give me many answers as she doesn’t specialize in breast cancer. She was so compassionate and told me that I will be okay. She even started crying — which made me feel even worse. I asked if she saw this in my age and she said no — and that it was bad luck and very rare. 

The breast surgeon and ob-gyn were very much working together as they were concerned with me, my baby and my future.  They said it’s best to get the baby out safely at 38 weeks. They NEEDED an MRI to make sure there wasn’t anything happening or changing in other breast as well, and also get prepared for a very radical surgery! That meant, no breast feeding!

To this day, I still cry when I talk about why I couldn’t breast feed my child.

They said I should have a mastectomy after the baby is born and nipple removal as well.  My mind was racing… Whaaaaat the F*ck!

They thought it was stage 0, but you never truly know until you go in and remove the tumor completely, but mastectomy?

I felt shattered.

At this point I didn’t know anything about breast cancer or DCIS, but as soon as I left the obstetrician’s office I began my research. I studied and researched night and day. It took time away from my family but I know I am smart and I was willing to find out and understand this as best as I could. 

I found out that DCIS may not ever in a lifetime turn into invasive cancer.

People said to me, “Stop researching, stop looking online, stop all of this until you speak with the surgeon. Stay positive, you’re strong, you’ll beat this.” 

A new cancer patient can’t comprehend those terms.  

The surgeon wanted to get me in ASAP with a breast radiologist specialist to take a look at things. Ultrasound, mammogram (ouch), and then talk with me. It seems like they needed this info and scans before meeting the surgeon. Like I said before, I’m young — when you call me in for an ultrasound, tell my why please as I don’t know what this is all about and I also feel scared out of my mind. They didn’t explain much. I had to call to ask. So ANNOYING!!!!! I know they needed more info, but why couldn’t someone explain that to me instead of just ordering things and blindsiding me? I’m a person that needs to know what and why and when at all times.  It’s my body. Tell me. Don’t keep me waiting!!

The radiologist was truly the first woman and doctor that I met with that was thorough and honest. I felt she was amazing and she gave me good news that my lymph nodes were clear along with other areas of my breast.

About a week later, I met with the surgeon. I brought my stepmom Pam and my husband Jason to this meeting.  She explained to me that I was diagnosed with DCIS and because it’s so low grade — meaning such low cell changes — its the best type of “breast cancer” you could have. 

My gut and intuition told me to keep researching my head off and to understand what’s going on. I learned very fast that just because you have a “low grade” “stage zero” breast cancer that doesn’t mean the treatment is less than any other INVASIVE breast cancer. 

I was told because of my age I had to treat this aggressively.

I could have a lumpectomy and nipple removed with radiation and tamoxifen for 10 years OR, since radiation can’t be done twice on that specific cancer side & due to my age for risk of recurrence, I could have a SINGLE MASTECTOMY with no radiation, and still have to take tamoxifen for 10 years.

Tamoxifen, from what I read, had many side effects reducing quality of life (depression, anxiety, loss of libido, menopause kicks in early), and it also puts you at risk for others cancers like uterine cancer. 

Mastectomy seemed like the best option at the time. After painful agony and stress weighing my options, I decided to go with a bilateral mastectomy. 

As soon as I thought about my risk being reduced, my kids came to mind. I want to be there for their lives. I’ll lose any part of my body to be there, I would do whatever it takes, truly. 

All of my genetic testing came back negative which was great news as breast cancer runs in my family — my grandmother on maternal side had it twice. 

I booked my surgery to have both my breasts removed for October 11th, 2016. After 100% deciding this was the way to go, preparing myself and my worried family members, I continued to do research. Day and night I was linked on my phone to try to understand this disease and what it can do to people, how to reduce my risk, etc.

I was so mind-boggled, extremely stressed because of my diagnosis, I couldn’t even think straight. All I knew was this supposed estrogen positive cancer was being fueled because of the pregnancy and I didn’t want it to get worse. I decided to get induced. 

I was there for 3 whole days trying to induce labor, and then I had to have an emergency C-section. In that very moment where I was taken to surgery, I have never prayed so much in my life. I was devastated by my breast cancer news and bad news in general that I had to pray for this baby to be healthy. I prayed and cried and prayed. I needed my baby to be healthy. I felt like the universe was out to get me until my beautiful baby was born, C- section or not.

My little warrior who made me a warrior, arrived healthy. Born on 7-13-16, weighing 8 pounds 5 ounces, and 22 inches, he was perfect. We named him Jack Avery — meaning God is gracious.

At that point I felt there truly is a God. I was so happy. I felt like I could get through anything especially knowing he is ok. Ever since Jack was born, things truly turned around.

Although I still had this lump of messed up cells in my body, I couldn’t help but think about it and the surgery I was about to have. I had anxiety dealing with the loss that I couldn’t breast feed, the loss of my breasts in general. I was torn. I was hopeless. I was depressed. I somewhat lost that special time with my baby Jack because of the invasion of these nasty thoughts. My mom Sara was here for the first 3 weeks of Jacks’ life. Without her, I wouldn’t have made it.  

That next week was filled with doctor appointments which made me leave my newborn baby. I met with a plastic surgeon, and I met with an oncology counselor every week.

My mother-in-law Deirdre was here after my mom left. She came to appointments and took care of Jack, and she helped me through all of this. Our entire family was put through a lot of mental strain.

During all of this process to get me prepared for my double mastectomy,  I was determined and persistent to find out answers and understand this detrimental disease. I read books for hours. I found out so many different things about DCIS — and how it’s often mistreated. My first instinct when I got diagnosed was this could not be. I could not have this disease.

While all of this took time away from my family, something was telling me to keep looking. I realized now that all of this searching was FOR MY FAMILY

I found an unbelievable wealth of resources when I joined a few different online DCIS support groups. When I posted my story I had about 50 comments. I found a few others that were pregnant going through this and that truly made me feel like I wasn’t alone anymore. Not only have these ladies conquered much worse, but it was a place I could talk to others and ask questions to women all over the world to understand treatment protocols, side effects, etc.

One group focused on integrative health. This is where I found Donna Pinto, who TRULY CHANGED MY LIFE. The information and resources from her site DCIS 411 just clicked with me and I felt I had to follow this path.

While looking over Donna’s site, I found the name of a breast consultation service for a second pathology opinion. I also listened to Donna’s recording she posted of her 45 minute phone consultation with this doctor reviewing her DCIS pathology. His name is Dr. Michael Lagios and he created a lot of the literature about DCIS. He arranged to order my slides and imaging for him to review.

Three days later Dr. Lagios called me. He said:

“Courtney my interpretation of your slides is Atypical Ductal Hyperplasia, which is benign. It’s not DCIS. There has been some cell changes but not certifiable DCIS. What I would recommend is an adequate excision of the lesion and then go from there with an adequate diagnosis.”

Since my first surgeon and team said I needed my nipple removed, and that mastectomy would be best, I questioned him about this. He said, “My goodness, a mastectomy is a bit much. We don’t even have enough evidence to support that mastectomy is the correct decision. I don’t see why you can’t save the nipple. Start slow with this process, get it out, and then see if you need major surgery. Usually the tumor isn’t as close to the nipple once it’s excised.”

I asked Dr. Lagios if he would speak to my surgeon to discuss his thoughts.

Finally after a week of not hearing from anyone, the surgeon called me. He said, “I spoke to Dr Lagios and I agree with him saying that we should take the lump out and then see if it’s really DCIS (cancer) or really Atypia Ductal Hyperplasia (benign).”

Ok let’s recap. Remember: I had a newborn and 3 year old during all of this. This time and transition was robbed from me, gone. I did get time with them, of course, but it wasn’t a healthy time for me. Much guilt was felt in my family through this burden. 

My mom and mother-in-law were in town taking care of my baby as I was absolutely distraught and confused about what is going on. Relieved? Yes. Who to trust? Not sure.

I decided to reach out to a doctor I had worked for in Palm Desert and he recommended I contact City of Hope in Los Angeles. I booked a consult with the chief of breast surgery, Dr. Laura Kruper — and wow, was she a breath of fresh air.

As soon as my husband and I walked into that hospital, into that room, we felt better. 

We felt like we would be taken care of — like there was no unanswered questions. Dr. Kruper’s fellow came into our treatment room and handed us a paper saying their pathologist agreed with Dr Lagios…

This is not DCIS, this is Atypia Ductal Hyperplasia. This is BENIGN. 

They thought mastectomy, too, was unnecessary as an initial first step. However, I did need to have an excisional biopsy surgery to get this lump (papilloma) out. We booked it for the next week September 7, 2016. After getting this carefully excised, then we could talk about further treatment. 

It was terrifying as this was only two months after my baby was born. One of my best friends Tiffany watched my son, Jack, while I went under anesthesia to get these messed up cells out of my life. I was so afraid to go under and leave my newborn. It was sooooo hard. I felt so sad. At the same time I couldn’t wait to get this out. Tiffany made this time much easier for me. 

The surgery only took one hour and the doctor came out saying, “All I see are BENIGN cells, involving a papilloma, but we will do a pathology review and see you in two weeks for final results.” 

Dr. Kruper was amazing and I barely had any pain. My nipple didn’t die and I still had sensation. My husband had taken so many days off work that he couldn’t take any more. So I asked my dad to come with me to get the final pathology results.

Two weeks later I went back to City of Hope with my dad and my 2 month old son, Jack. I went into that room stressed out of my mind. My nails were chewed off, my mind was racing, I just wanted to know. I couldn’t handle that I didn’t know if it was really cancer or really not?! 

Dr. Kruper came in and said there was no more trace of atypia cells. Meaning, BENIGN!

Hallelujah!!!!!!!!

The only weird cells was from my first biopsy — a few mm of papilloma. Which means my risk of breast cancer has been reduced dramatically. And I don’t have to take that awful drug tamoxifen. 

Dr. Kruper gave me a huge hug. I was in awe. Checkup in 6 months. 

BEST NEWS EVER!!!

I walked out of that office so happy — my smile was from ear to ear. My dad was there feeding my baby, Jack, and as soon as I walked out I yelled:

“BENIGN!!!”

He was so happy. We left and it felt great. My dad said he hasn’t seen me smile like that since I sunk a put in golf when I was 9. He said the same happiness was there. I was so happy that this was over and I could now go on with my life.

Does that mean I’ve been happy ever since?

No → this has changed my life forever. I still struggle with extreme episodes of PTSD and I do EMDR treatments to help with the trauma. Do I value life more? Yes. Is anything possible? Yes. I’m grateful for my life! 

After 4 years of clear scans, I can say I am free. I am a survivor.

I fought hard for my family. I never gave up. This is the moment I needed to share, to truly heal and have closure. I believe that you can heal anything — shift anything — with your mind and your beliefs. I have developed a spiritual core that can’t be broken because of what I have been through. I realize I was not given this challenge to struggle every summer — reminding me what happened near my 2nd child’s birthday, but to be an advocate for myself and other people around me. Every time I see Jack’s smiling face I am reminded of a second chance I was given. I am so happy to be here with my family and I am grateful every single day. 

Thank you to everyone for being there.  I couldn’t have gone through this without you. 


A note of gratitude and resources from Donna Pinto:

Thank you so much Courtney for sharing your heart-wrenching story and for your desire to help others! May you and your family continue to be blessed with health and happiness.

* Unfortunately Dr. Michael Lagios retired in 2018.

Current resources for 2nd pathology opinions:

A breast disease second opinion service by PreludeDx

31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 25 — Unbiased 2nd PATHOLOGY opinion is a MUST

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DCIS & Cryoablation? Guest Blog

My Croablation Journey

Dr. Dennis Holmes & me the day after Cryoablation. I was totally fine. 🙂

by Christine B.

I was diagnosed with DCIS stage 0 grade 2 June 2017. I was immediately turned over to a surgeon who strongly suggested a lumpectomy, radiation, and a hormone blocker. Better yet a mastectomy due to my small breasts.

I had never heard of DCIS until I was diagnosed!

So if I had breast cancer then why wasn’t it called breast cancer? And why was it treated like invasive cancer? I had to investigate my diagnosis.

After investigating all of my options which included second opinions and consulting with two cosmetic surgeons, plus reading all I could find on DCIS, I realized that the aggressive treatment I was presented with just did not make sense to me. I opted to just wait and watch. I was monitored via 3D mammograms every 6 months and used castor oil patches on my breast. My medical team at the time thought I was out of my mind.

For two years my DCIS remained stable. I got married and relocated to Florida. I had become involved with many DCIS Facebook groups and continued staying on top of my DCIS with new Drs. who were also pushing for further treatment. When I went in yet again for my usual 6 month check, I was told my DCIS had grown. It was then I decided that I needed to rethink my options.

One of the ladies within a DCIS Facebook group had posted her experience having cryoablation. I began asking questions. I watched videos on YouTube that actually showed the procedure. Her Dr. — Dr. Dennis Holmes — had done many lectures that were also uploaded to YouTube. He was well respected in the breast cancer community of professionals.

Dr. Holmes was three thousand miles away from me. Long story short, I contacted Dr. Holmes and sent all of my medical records to be evaluated. Lucky for me I was a good candidate for this procedure and my husband and I traveled from Florida to Glendale, California.

Dr. Holmes and his staff were amazing! This was an empowering experience as well as educational and interesting. This procedure makes so much sense! A probe that is inserted directly into the the tumor. The cells are frozen thus killed. A margin is created. There is no cutting and the breast is left perfectly in tact. I was able to watch the cells being frozen and destroyed via ultrasound.

The procedure took about an hour and I was out having dinner and site-seeing that evening. I applied ice later that evening and took two Tylenol. The next day I was a little sore, but I went on with site-seeing, so no down time!

The breast did have some bruising, but I had little pain. I could see the lump from the cryoablation. It has been 6 weeks since my procedure, the lump is getting smaller and will gradually disappear in time.

I will return to Dr. Holmes 6 months post cryoablation for a biopsy, MRI, and ultra sound to confirm it is indeed GONE! The success rate is very high. With cryoablation performed by Dr. Holmes over a 10 year period there have been only 3 re-occurrences.

Hormone blocker may also be suggested if needed and the possibility of radiation depending on individual case and patient willingness.

Cryoablation is currently an off protocol procedure and is not yet covered by insurance. I was informed by Dr. Holmes that hopefully within 5 years, this will be another treatment option for some women and covered by insurance. Doctors do not inform patients with regard to cryoablation if they do not perform it. I feel that is a crime. Women should be informed of all choices!

In my opinion Dr. Holmes is a hero. He saves breasts one woman at a time!

“Not every patient wants to have the most extreme treatment. Some patients want the least invasive procedure…” – Dr. Dennis Holmes

For more information: Dr. Dennis Holmes and Cryoablation

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