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.
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”
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 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
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
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):
“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!
Facebook Groups: DCIS Overdiagnosis and Overtreatment
Donna’s Choice: Global Healing From the Inside Out
Thank you for your important ground breaking work. Thank you for sharing and for speaking up! I am one of the women who has benefitted from your experience. I am surgery free and “ overdiagnosis” free after being told I had stage zero DCIS that conventional standard of treatment would have had me in “ cancer treatment “. Instead 18 months later follow up tests cannot even find the original so called DCIS. I made some life style changes too – a plant based organic diet ,among other things. Thank you thank you. Keep doing this good work in memory of your parents whom I’m sure of are so proud of you !
Thank you so much Gwen. I am so happy to hear your good news. Wishing you continued health and blessings. Our angels are with us! 🙂
As always, thank you for the groundbreaking work you have done in the area of DCIS overdiagnosis. It’s amazing to see the word “overdiagnosis” officially added to the NLM, These are huge strides and you have been key in making it all happen. Being able to stand up against the horrible pressures to cave in to the status quo surrounding DCIS and also mammography takes a strong person and you are it! Your parents are definitely walking beside you in spirit and cheering you on every day. All of us here have our guardian angels. I count YOU as being one of MY guardian angels!
I, too, had to abandon the mainstream breast cancer forums online because all I encountered from them was abuse and lack of support. It was obvious to me that they were not being run by people who valued science or open dialogue. I left and never returned. Panic driven medicine is not medicine. It’s merely PANIC.
It’s so wonderful to know that you have made many friends through your work on DCIS411. Even though we have never met, I count you as a friend! And I so so admire the medical professionals who are finally seeing the light, and one in particular who has spoken out so courageously about overdiagnosis in general, Dr. Gilbert Welch. I feel he has been persecuted a great deal for his stance, but this is nothing new for doctors or patients who speak out.
Regardless, we will all continue to fight this insanity of DCIS Overdiagnosis, Overtreatment, and Over everything! Congrats for any and all honors and recognition you receive along the way, It’s a difficult journey but sooooo worth it! We love you!
Hello, my wife recently had a follow up thermograph. She was told that her right breast was graded in the TH4 range and the left one TH3 She advised to confirm with another modality, although the person who did the imaging suggested that TH4 may be normal for her. Any suggestions? Thank you.
Have you read my blog post about SonoCine? https://dcis411.com/2017/01/10/bye-bye-mammograms-hello-sonocine-ultrasound/
Thank you, Donna. The SonoCine makes more sense than a mammogram.
I appreciate everything you share! Thank you for empowering me, having me live a life without fear but staying in the light! I’m so glad I found you 4 years ago. I have not had a mammogram since 2019 and I don’t plan on one! Lots of love!
Thank you Maya! I am happy you are living in the light and you have found peace with your situation and the best way forward for you! Lots of love and blessings for continued excellent health and happiness. xo