Thank you for this blog; it has been a great help to me.
My family doctor pressed me to get a mammogram a couple of months ago. I am 70 years old and had had a mammogram 16 months before. There is no history of breast cancer in my family. After the mammogram, the radiology center asked me to come back for more imaging because they thought they saw something of concern. The results of the second, more detailed scan showed some calcifications; the radiologist showed me images and said I could choose between monitoring and having a biopsy; she said the calcifications were near the chest wall so she wasn’t sure a biopsy would get them. I said I was comfortable waiting. At that point she started putting on a lot of pressure for me to choose to have a biopsy instead. I agreed, expecting it would be negative. The procedure required 3 tries, the third time with a larger needle, to get the desired sample. A clip was placed to mark the location. The results of the biopsy came back Ductal Carcinoma in Situ (DCIS), ER+, left breast, Stage 0. My family doctor then referred me for a follow-up MRI of both breasts and to a surgeon and oncologist. The MRI was done and showed nothing. NOTHING! Both the radiologist and my family physician talked about the likelihood that a lumpectomy would take care of the DCIS; my doctor said Tamoxifen or another estrogen suppressant might be prescribed to address the estrogen sensitivity shown in the biopsy pathology results. Neither mentioned the clean MRI.
At the surgery consult, the surgeon began by showing knowledge of my medical history, which seemed to show she had done her homework, then gave us an opportunity to ask questions. I asked about sentinel node biopsy based on information my brother, whose wife died of breast cancer, gave me; she said she would be doing that using blue dye to find the nodes. She wanted an RFID clip inserted in place of the one the radiologist had put in. She also described how she decided by how the tissue “felt,” how much of the breast she would remove. Pathology would be done on the sample afterward to help decide on further treatment. While I was focused on this, my husband mentioned a lumpectomy; the surgeon corrected him, telling us that that wasn’t the correct term-the procedure was technically called a “modified radical mastectomy,” but I didn’t absorb that part of the conversation. Later at home, my husband brought it up, saying that he thought that meant removal of the entire breast. (By the way, his first wife died of breast cancer and he has told me over our years together what that was like, so I am not unfamiliar with what cancer can do to a person.) At that point I became upset. The next day, a Friday, I left a message asking the surgeon to call me to clarify whether she was planning breast conservation or to remove the entire thing. As she was in surgery that day, I was told she would not be able to call back until Monday. Later that day, her assistant called and gave me the dates for the surgery and all of the other related procedures.
Over the weekend, I tried to find information on what a “modified radical mastectomy” was; I think I had heard her say it, but thought the “modified” meant it would be a lumpectomy. What I found told me it wasn’t. It also told me what the surgery would do to my body and how that might feel. And I came across a number of articles, in journals and reputable publications, about the overtreatment of DCIS with surgery. That DCIS doesn’t always progress. I also found this website [DCIS 411]. After a great deal of anguish and talking it over with my husband, I realized I was more afraid of having my body mutilated and myself traumatized by the surgical procedure and the prospect of living the rest of my life from scan to scan wondering whether it would be clean or not, than I was of actually dying! As I said, I am 70 years old, and I have had a very good life. I also have begun to have some health challenges that even before this, led me to begin thinking about end-of-life issues because, you know what? We all die eventually!
By the end of the weekend, I knew that I was not going to go ahead with the surgery, at least not now. I’m even a bit uncomfortable with the idea of a second opinion or monitoring, because I expect to just be pushed back toward this treatment treadmill. I will go back to see my family doctor and try to explore other options, none of which, you notice, have been presented to me yet, or information on pros and cons of options and descriptions of the possible/likely outcomes of alternatives. I don’t know if there are practitioners in my area that would consider other approaches or respect my values and right to choose, but I am going to try to find one. As I was approaching my 70th birthday recently, I felt I have reached the normal human lifespan; I can feel ways my body is beginning to break down. But today, I am still here, and every day that that is true is a gift. I choose to experience that in an intact body, not one that is mutilated and with a mind that is traumatized and kept terrified by the prospect of a negative scan or medical report in the future and what will have to be done to me to treat it. And I am prepared to live with the consequences of that choice.
I am sure that my decision is not necessarily right for others; situations are different, everyone has to decide for themselves, and no one really knows what it feels like to walk in another person’s shoes.
Thank you Lynn for sharing your story and insights. I’m so happy you have found help and solace from DCIS 411. Wishing you peace, love, light and health – Donna Pinto
For anyone interested in writing a guest blog post, please email me (Donna) at dp4peace@yahoo.com
A total of 1286 DCIS patients who did not undergo locoregional therapy were identified. Median age at diagnosis was 60 years (inter-quartile range = 51–74 years), with median follow-up of 5.5 years.
Among patients with tumor grade I/II, the 10-year net risk of ipsilateral invasive breast cancer was12.2% (95% confidence interval [CI] = 8.6% to 17.1%) compared with 17.6% (95% CI = 12.1% to 25.2%) among patients with tumor grade III (n = 244) and 10.1% (95% CI = 7.4% to 13.8%) among patients with unknown grade (n = 495).
Among all patients, the 10-year cumulative incidences of ipsilateral invasive cancer, contralateral breast cancer, and all-cause mortality were 10.5% (95% CI = 8.5% to 12.4%), 3.9% (95% CI = 2.6% to 5.2%), and 24.1% (95% CI = 21.2% to 26.9%), respectively.
Conclusion
“Despite limited data, our findings suggest that DCIS patients without locoregional treatment have a limited risk of invasive progression. Although the cohort is not representative of the general population of patients diagnosed with DCIS, the findings suggest that there may be overtreatment, especially among older patients and patients with elevated comorbidities.”
“A recent evaluation of data from the SEER registry of women diagnosed with DCIS from 1992-2014 who did not undergo surgery at the time of diagnosis indicates that the rate of invasive progression is highly variable between individuals and that the 10-year net risk of ipsilateral invasive breast cancer ranged from 15%-28%, depending on age at diagnosis and histologic features.”45
“DCIS upstaging rates in women eligible for active surveillance trials are low (6–10%), and in this series, all those with invasive disease were early-stage, node-negative. The careful patient selection for DCIS active surveillance trials has a low risk of missing occult invasive cancer and additional studies will determine clinical outcomes.”
“Surgery for DCIS has remained largely unchanged since the 1970s, and mastectomy is now performed more often than is seen with invasive cancer. It is 40 years since the inception of the first breast screening programs, and it is time to question the appropriateness and the outcomes of these management policies for screen-detected DCIS.”
Low-risk ductal carcinoma in situ (DCIS) lesions often do not progress to invasive breast cancer during the patient’s lifetime. Therefore, active surveillance (active monitoring) without surgery as a management strategy for low-risk DCIS is being evaluated in three Clinical Trials, called the COMET (USA)- LORIS (UK)- and LORD (The Netherlands/EU)-trial.
“Alternative” Perspectives, Support, and Resources
Many of us have wondered — who will replace Dr. Kevin Kelly when he officially retires? I am happy to share this message I received from Dr. Kelly’s office via email this week…
To My Dear Patients,
As you know, my medical practice has been devoted to early detection of small, easily treatable breast cancers with yearly SonoCiné exams. I began slowly transitioning this past year towards retirement; and now, though the time has come for me to step away from the day-to-day reading of exams, you need not be concerned about your ongoing breast health. Assuring that you feel personally cared for and in safe hands remains my undiminished mission; and so, January 3rd 2023, taking my place to read your SonoCiné exams and any needed follow-ups is Dr. Meghna Krishnan (Dr. Meg). Our location will remain the same, and Isabel, our ultrasound sonographer, will continue performing your exams under my supervision.
Dr. Krishnan is a warm and highly intelligent physician who provides patient-centric, individualized care to her patients. We think the world of her and know you will too. Her knowledge, competence and caring are exemplary and it is with utter certainty that I leave you in the best possible hands. That my wife and daughter will be Dr. Krishnan’s patients going forward attests to my utter confidence in her. In addition to reading SonoCiné scans for two other sites for some time now, over the past three months, Dr. Krishnan and I have double read hundreds of SonoCiné exams together, which has provided me the opportunity to personally verify her excellence in reading and reporting the exams.
Dr. Krishnan is a breast imaging, fellowship trained, American Board of Radiology certified radiologist. After completing diagnostic radiology residency at Yale University School of Medicine, she graduated with fellowships in breast imaging and abdominal imaging from Mallinckrodt Institute of Radiology, Washington University. She has over 10 years post-fellowship practice as a breast imaging radiologist. Dr. Krishnan is excited to provide SonoCiné’s advanced, state-of-the-art, radiation-and-pain-free ultrasound technology to detect cancerous lesions in their earliest, most treatable stages. Her desire is to save as many lives as possible.
I wish each of you a long and healthy life; and if you choose to honor my wish, you can easily do so by scheduling your annual SonoCiné exam, and encouraging friends and family to do the same. We are currently accepting new patients for annual SonoCiné exams, anyone experiencing any breast issues or concerns, as well as those who wish to have a second opinion on a recent finding. [Breast Ultrasound Center, Pasadena, CA]
Thank you for the trust you have placed in me, and I hope you will continue to feel that trust – in me, Dr. Krishnan, the Breast Ultrasound Center, and the SonoCiné exam.
If you have any questions or wish to reach out, please email me at office@kkmdinc.com and I will happily respond.
It has been an honor to serve as your breast radiologist and I wish you all much happiness and good health.
Kevin M. Kelly, M.D.
——————————————-
A note of appreciation from Donna Pinto:
Dear Dr. Kelly:
Thank you for your integrity, honesty, wisdom and skills as a radiologist.
Thank you for being a tremendous part of my educational journey.
Thank you for coming to San Diego to speak at an event I hosted in 2015: “Beyond Breast Cancer Awareness: What Women Really Need to Know.“
Thank you for inspiring me to write and share about SonoCine:
A paradigm shift is defined as “an important change that happens when the usual way of thinking about or doing something is replaced by a new and different way.”
DCIS – Is Not Breast Cancer! — an online support group created in 2020 — has quickly attracted over 1.5k women with approximately 25 new requests to join each week.
The group’s intention is to support women who are interested in learning about and supporting one another in an unconventional mindset and perspective about DCIS — one that is based in a core belief that DCIS is NOT breast cancer — and should not be treated like “cancer.”
The BackStory of the Group’s Origin
Jill Rezak
Jill Rezak, the group’s founder said, “I started this group because I wanted women who were diagnosed with DCIS to know they didn’t have ‘cancer,’ and therefore didn’t need surgery. When I was diagnosed with DCIS, I didn’t know any better, and unfortunately I had a lumpectomy.”
Jill had been actively engaged in other online DCIS support groups. She would often post links to research studies to help women find information that they may not be aware of. Sometimes heated debates ensued.
Booted Out After Sharing Research on Lymph Node Removal Being Unnecessary
Jill said, “A woman posted she has DCIS and is getting a lumpectomy and the surgeon wanted to remove some lymph nodes to see if the cancer spread. I saw the post after 20+ women posted encouraging to go ahead and remove your lymph nodes as DCIS does become invasive. I told this woman not to remove lymph nodes and posted about 15 articles about DCIS and included a link to DCIS411. I even pointed out that the name of the group had ‘non-invasive’ in it. I also posted articles about what non-invasive means. Some women reported me to the admin and she kicked me out.
The next day I started our group [DCIS is NOT Breast Cancer].”
Donna — Dismissed and Disparaged After Sharing Article about Overdiagnosis and Overtreatment
Donna Pinto
I too had been abruptly removed from a DCIS Support Group after sharing an article I was interviewed for.
A journalist from Ireland had sent me some questions by email — one of which was:
Do you think over-diagnosis and over-treatment is a significant problem?
My answer to this question was used as a bold headline:
I had posted the article link in some other groups and got a lot of good feedback.
I was shocked when I received a comment from Lisa (not her real name), one of the admins of a DCIS Support Group with over 3,000 women.
Lisa: “This headline is absolutely appalling. Donna Blaurock Pinto – you should know better. This is my friend, (photo), who died of metastatic breast cancer, last week. The TRAVESTY is the lack of funding for mets research. You having a mastectomy (oh no, not that horrible fate!!) pales in comparison.”
Lisa went on: Donna Blaurock Pinto – information contained in this is not accurate…
…in the article, it doesn’t mention your lumpectomy. This is what is at issue, and what’s clouding your message. if you remove the DCIS, surgically, then it is surgical treatment, not active surveillance. And lumping intermediate DCIS into “low risk” is going to bite this research in the rear – intermediate with necrosis is a tricky bastard – likes to grow large & bust out multifocal invasive BC. There is research backing that up, too.
…you had lumpectomy, re-excision, and “close margins”. You are recommending that other women do less treatment than you did. You are recommending that they do not even do lumpectomy – that they trust possibly ineffective screenings, once a year, rather than at least getting surgical pathology results. This is the problem. If you start to lead with your true, full, and accurate experiences – including that the DCIS was removed – then you might be able to get more women to be interested in your journey.
I attempted to explain:
I have always been completely transparent with my entire story. You can read it all here: https://dcis411.com/donnas-journey/ It’s been published on my blog since Dec 2011… It’s complicated as it involves refusal of treatments… surveillance for 18 months…then a 2nd mammogram scare, and yes I did surgery due to being told it was likely INVASIVE…..and then a positive margin and re-excision to be over and done with it….but still a close margin and back to square one with the pressures for mastectomy or at least radiation and tamoxifen. Again I was on my own as I wanted less than standard of care treatment. It did not make sense to me to have a mastectomy or radiation after I got 2nd pathology opinion from Dr. Lagios…but even he said to me I would not do nothing (after the surgery). I got his permission to publish the recording of my consultation with him so that other women could learn from my questions and his expert answers….He charged $600-750 and not always covered by insurance. He downgraded my DCIS and said it was all in fact LOW grade when 3 other path reports stated intermediate or intermediate to high grade. You can listen to it here: https://dcis411.com/2015/02/13/listen-to-my-phone-consultation-with-dr-michael-lagios/
I continued…
Many women are now doing active surveillance — as I did. Some of them will be facing biopsies and surgeries because the darn imaging is so inconclusive and this is the only way to know when there is a highly suspicous area as was the case for me. Please do not minimize my approach — which was in fact refusal of all treatments, surveillance only for 18 months. Only when faced with a serious potential invasive cancer did I elect to forego another needle biopsy and have a wide excision (same as lumpectomy but there is no lump). I created my website to educate women as I only got educated about alternative more conclusive imaging AFTER surgeries failed. Aggressive treatment is perfectly right for some, but not for everyone. As my story unfolded I learned about things that I was not informed about and I think women should hear all sides and be properly informed and be supported for their choices and preferences. I made the best decisions I could given the unknowns as we all do. It’s really hard going against the majority, but there was some legitimate research backing my choices….and now it’s become more legitimate. My message is for women to be fully informed about all the pros and cons of screening and treatments. I was young, naive and trusting but I felt blindsided when the diagnosis and treatments were presented to me. I put the brakes on and did research and found Drs saying we should take low-risk DCIS out of the screening agenda and ease off treatment. This resonated with me. I thought I can not be the only woman out there in the whole darn world that had this feeling of wanting to do less.
The Criticism Kept Coming
Over the next two days (after I posted the article link), several women began a bombardment of comments critizing me and the article I posted. I was astonished. I saved many of the comments in a folder which I labeled Group Mockery. Here are just a few:
If I’d taken the same approach I’d likely be stage 4 by now.
Over treatment?! Bollocks!! If I’d have ignored it I’d be planning my funeral!
Cancer is always serious business.
Thanks to “over diagnosis” and “over treatment” activism, women aged 35 through 50 will now have to fight to have breast cancer screening covered by insurance. That means they have less chances for early detection and lowers their chances for survival. Thanks for helping to set women’s health back 25 years.
ditto! I so agree I would be dead today if I had done active surveillence!!!!! so maddening these irresponsible articles keep showing up.
it totally sucks that someone would again, discount a diagnosis like this.
I’m so sorry (admin) How horrible.
I didn’t take chances it ended up saving my life.
Further accusations the admin wrote me in a private message:
“Anything positive that you could have brought to our group has now been overshadowed by your self promotion and dismissive treatment of any information that doesn’t fit your narrative. It didn’t have to be this way – but I’m afraid that big egos seldom make good listeners.“
Pretty harsh, I thought.
I had been messaging with Lisa just prior to me posting the article link about overdiagnosis and overtreatment. I wrote: My interest and research is mainly in low-risk DCIS and I represent patient perspectives and can help in a balanced way… since I did Active Surveillance and ultimately had surgery… I understand the psychological distress of doing surveillance. Those women can have far more anxiety. I counsel many….never tell them what to do, but I give resources and encouragement to be strong when they are overly pressured.
The Disparagement Continued
After I was removed from the group, I learned my name was further disparaged by the admin. A friend sent me the announcement the admin made in the group:
I would like to address the removal of Donna Blaurock Pinto from this group. She made choices to continue posting self promotional articles and links, and she lied about our group and members of our group, in her group.
Now I was accused of lying???— I was flabbergasted.
After I was abruptly kicked out of the group, I shared in my DCIS Integrative group about feeling mocked and bullied by members in that group. To call me out as a “liar” was disgraceful.
A few women sent me messages of support:
She really wasn’t being reasonable. You weren’t promoting yourself or your website! You were just trying to give information. Women need to know there are options. They need to know DCIS is not a death scare.
I’m so sorry that you suffered abuse for telling the truth.
What a disservice, you are a true gift working so hard to restore balance. Now such valuable info will not be able to be voiced and considered.
I am so sorry to learn this Donna. It is unimaginable. Just know that so many of us understand the importance of your pioneering efforts and are so grateful. Thank goodness my daughter knew you and passed along your information that prevented me from treatment I did not need.
I joined that group for about 2 days and had to leave because the level of fear (and of anything alternative) was more than I felt was helpful upon first diagnosis.
Geez. Sorry that’s how it was handled. I was following your post and found the article very informative.
I was diagnosed with low grade DCIS. I have decided to wait and see. I feel DCIS is over treated as well from everything I have read. I have voiced this and have been called an idiot because I choose alternative treatment. When I was blasted it was because I may make others feel bad about their decision to have mastectomies.
That is so sad, because I believe that is the site you first reached out to me with help and hope! That admin has done these scared, searching women a terrible disservice!
A friend in the other group also sent me some posts from women who spoke up and did not agree with the way I was treated:
I think this is unfortunate. I want to be fully informed and study all aspects of this disease. I follow several groups to get varied information and opinions. Whether she is self promoting or not, she has provided information and some excellent articles. I pick and choose what I feel comfortable with and make my own decisions regarding my treatment and care based on everything I’ve learned. We have enough stress with this disease without now having women who can’t coexist in a productive manner. Sorry this is happening to all involved.
I am sorry that Donna was removed. I never felt her posts were self-serving. I want to hear all I can whether I agree or not. I think it is everyone’s responsibility to gather as much info as possible and then check it out further before implementing. The info on Donna’s website helped me from making the wrong choice for myself 6 years ago. She is passionate about her beliefs and I admire that she feels compelled to share them.
The Spark to Create a New Group!
It was about a year later when Jill invited me to be a co-administrator of a group called DCIS is NOT Breast Cancer.
I did not hesitate. I said, YES, count me in.
For many years, I worked hard at staying balanced, diplomatic, and inclusive of everyone diagnosed with DCIS. I created a group called DCIS Integrative Support & Empowerment for this very reason. Unfortunately, more often than not, discussions would veer towards worst-case scenarios and the need for aggressive “cancer” treatments.
Jill and I both felt the time had come for a support group to lead a paradigm shift. One that was completely different from all the other DCIS support groups (even my own integrative group.)
Enter Nancy Riopel —Condemned for Posting about Active Surveillance
Nancy Riopel
Nancy and I had been communicating privately for some time. She was eager to join our admin team shortly after a similar disappointing experience with the same online DCIS support group that removed me. She wrote about her experience:
As I gained more knowledge about Active Surveillance, I tried to share what I had learned in the group. I posted a few well done research studies and urged those who had not yet made a decision about treatment to consider the fact that there were some major clinical trials which suggested that Active Surveillance was likely to become the new standard. I was amazed by the reactions that I got. Many condemned me for sharing the articles and expressed that they felt they would be dead now if they had not gone ahead with aggressive standard treatment. Some spoke of having seen women die of breast cancer — disparaging researchers, doctors and group members who advocated for Active Surveillance as an option in the treatment of DCIS.” – Excerpt from Nancy’s story PART 4
In February 2019, Nancy was told her only option was a mastectomy after a diagnosis of DCIS. She documented her “roller coaster” experience as she became educated and started asking questions and pushing back against the medical advice she was given. Nancy’s enlightening four-part story was published by Breast Cancer Action, Quebec and subsequently as a guest blog on DCIS 411:
Nancy, Jill and I all felt a similar shock in other groups. When we would post articles or links about taking time to research a less conventional approach to DCIS, such as active surveillance plus holistic diet and and lifestyle changes, debates often ensued. We were usually overtaken by the majority who believed DCIS IS CANCER. Many felt the standard of care treatments were life-saving, despite studies showing no mortality benefit.
In addition, many women in other groups identifed as “breast cancer” patients and “survivors.” Sadly, this is often how it is described by healthcare providers and links on 1st page of Google searches. DCIS is often described as an early form of breast cancer, and most women are told they need to make an immediate apointment with a breast surgeon to have the “cancer” removed. (Big part of the problem!)
I cringed when the KPBS TV show host introduced me as a “breast cancer survivor” during a live interview in 2015 (below).
I said, I don’t even think it is “cancer” and I mention there are resources and support for an “alternative thought process.”
Why Women need THIS Group to be very very different from others!
Some might say, the group title is too polarizing.
Nancy said, “For me this group, [DCIS is NOT Breast Cancer], is important because women who have chosen to push back need a safe space where they aren’t constantly faced with a push to go conventional and surrounded by people who are afraid they are dying or will die of cancer. Also a place where they know they aren’t crazy for refusing treatment and aren’t alone.”
Many women state this is the only group they feel safe in and they do not want it to be like the other groups.
A True Support Group
It has taken years, but we finally have a “support” group with no debates, no condemnation, no passive aggressive comments, no ridiculing, no fear-mongering, and no encouragement of aggressive treatments.
Many group members resonated with an image posted stating,
“I STOPPED EXPLAINING MYSELF WHEN I REALIZED PEOPLE ONLY UNDERSTAND FROM THEIR LEVEL OF PERCEPTION.
One group member commented:
“This is impossible to explain.
The support of being in this group is priceless.”
Below are some of our group’s core perspectives:
Some say DCIS is “cancer.” We say DCIS is “NOT cancer.”
Some see DCIS as a scary shark.
We see DCIS as Overdiagnosis and Overtreatment.
Some say DCIS is a ticking time bomb.
We say DCIS is a wake-up call.
Some say we need more evidence. We say we have all the evidence we need.
For anyone sincerely interested in learning more about a healthy, holistic, non-conventional mindset about DCIS, we would love to welcome you and get to know you!
Please click the link below and request to join our ever-growing community:
Prospective members must answer three important questions to see if the group is the right fit. If not, women are referred to other groups which offer more support around conventional treatments for DCIS.
Comments are most welcome. Please feel free to share your thoughts below.
If you would like to receive an email notice when new posts are published, please enter your email address where it says “Follow”
“Many DCIS lesions will never progress to IBC during the patient’s lifetime [3]. Biopsy review studies of patients where DCIS was initially misdiagnosed as benign and thus not treated after biopsy suggest that up to 85% of all DCIS will never progress into IBC [3,4,5,6]. Consequently, there is a growing concern about possible overtreatment for low-risk, with favorable characteristics, DCIS [3,7,8,9]. DCIS treatment de-escalation trials are being conducted to investigate the safety of active surveillance in women with low-risk DCIS [10,11,12].” -Prediction Models and Decision Aids for Women with Ductal Carcinoma In Situ: A Systematic Literature Review, Published online Jul 2, 2022.
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…
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.
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.
“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.”
“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…
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.
“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 In Situ Invasive Overtreatment Now)
The Psychological Harms of Overdiagnosisand Overtreatment
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.
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.
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 LIFE – the perfect recipe for success in treatment of breast cancer.
DCIS 411 