What a major milestone this is!
Laura Esserman and Shelley Hwang — named to the 2016 TIME 100 Most Influential People in the World!
Why are These Doctors in My Top 10?
From the day I received a DCIS diagnosis and I was told of the very drastic and aggressive treatments, I began to investigate what intuitively felt seriously wrong. I was scared, confused and overwhelmed, but thankfully I soon discovered two breast surgeons leading a “controversial” call for change and discussing the problem of “over-treatment” of DCIS.
Laura Esserman and Shelley Hwang became my heroes. They were both boldly taking a stance — challenging the medical status quo when it came to DCIS and calling for radical change. I have been following and promoting their important messages for over six years.
Up until recently the mainstream media didn’t pay much attention to them. Celebrities with DCIS choosing double mastectomies made headline news while the over-treatment issue — potentially harming thousands of women every year — continued under the radar of the major media.
Then in August 2015, the largest study ever on DCIS concluded there was no difference in survival between DCIS treatments. Almost overnight Esserman and Hwang began to get the attention and recognition they deserved. Even I was featured in several major news segments! Click here to see all the exciting media hoopla.
The Inspiration to Create DCIS 411
One of the biggest reasons I felt compelled to create DCIS 411 was to share Esserman and Hwang’s published statements that I had been collecting for nearly two years.
I discovered their controversial wisdom soon after receiving the shocking blow that sent me scrambling to the internet in January 2010. Esserman and Hwang gave me my sanity back. I felt completely validated and reassured that I was not crazy for choosing to forego drastic and alarming “standard of care” treatment protocols my doctors in San Diego were urging me to do. I found a sense of peace and confidence knowing breast cancer experts believed as I did — only they had years of clinical experience and scientific research to back up what was just a strong gut feeling for me.
While I felt blessed and overjoyed every time I found an article quoting these experts, I knew most women probably did not have the time to research this topic as I had.
I felt strongly that every newly diagnosed woman deserved to know what these highly credible breast surgeons were stating. The problem, however, is all too often, women are rushed ahead with surgeries and radiation before they have a chance to blink. And even if they did find an article or two and they brought these out-of-the-box perspectives to their doctors, most surgeons and oncologists would likely not support them — or worse — scare them that DCIS was a “ticking time bomb.”
It sickened me to know that over 60,000 women a year might be missing a crucial message that could potentially save them from losing their breasts or sparing them from weeks of radiation.
Not Everyone Felt As I Did
When I first stumbled upon Esserman and Hwang’s bold viewpoints, I felt elated. I thought it would be a no-brainer for doctors and women to join the “less is more” bandwagon. To my astonishment, I was wrong. Resistance and even belittling from medical professionals and patients alike was what I experienced. Doctors quickly dismissed the topic of active surveillance as “too controversial” and “too risky.” My doctor actually said to me, “Don’t be stupid Donna.”
Even worse was the response from patients chatting in online DCIS support forums. When I shared links to articles discussing active surveillance and my choice to forego the standard of care aggressive protocol, a heated debate would often ensue. There were many naysayers and some were down-right mean. Many women argued — “DCIS IS CANCER” — and told me I was being foolish and irresponsible.
I quickly grew tired and frustrated hearing worst-case scenarios and statistics of bad outcomes. After being told NOT to “promote” my new DCIS 411 website by moderators in an online DCIS forum, I signed off for good. All I wanted was to help women find support, valuable resources and peace of mind if they were like me — seeking options to a fear-driven urgency to undergo potentially harmful treatments with little or no benefit.
How Sweet It Is — Making a Positive Difference
Today, much has shifted for the better thanks to Laura Esserman and Shelley Hwang.
Thanks TIME Magazine and Melissa Etheridge for honoring them. You just made the mission of DCIS 411 and DCIS Redefined a whole lot easier.
See 2016 TIME 100, “Breast-Cancer Doctors Who Dare To Do Less.”
Stay Tuned…
Be sure to to stay updated on both Esserman and Hwang’s important studies by “following” DCIS 411 here and on Facebook.
See Patient-Centered Outcomes Research Institute for more information on their latest studies.
DCIS 411 
The individual with DCIS must take control of her own body and not listen to the first, second or third surgeon who tells you that you have cancer and you must have an immediate mastectomy. This is so true and is exactly my story. And while I applaud these progressive doctors who talk about survival rate equalities regardless of treatment, there are some caveats as regards Dr.Hwang’s approach to DCIS Grade 3. I met with her a month ago to discuss my diagnosis and, while she did not examine all of my biopsy slides, when she reviewed my images and reports she recommended mastectomy, saying there was a 60 – 80% chance my large area of high-grade DCIS (estrogen negative) indicated a microinvasion — just as all the other surgeons told me! Knowing her reputation for recommending breast conservation, and the fact that I am in a low-risk category (white, no bc in family, over 60) this shocked me. I then got another opinion from Dr. Michael Laigos in California, who at first agreed with all my surgeons to at least have a large lumpectomy. At that point I decided I needed a different tact, away from just addressing the body but focusing on the spirit. I received some direct, focused counseling at a spiritual center in Clearwater, Florida and at the end of my sessions there I got an email from Laigos saying he located 72 additional “missing” slides from lab that did my biopsy, that questioned the extensiveness of the DCIS high grade area and said the suspicious enhancements on imaging were not definitive. Woo-hoo! Then I found an Atlanta surgeon who agreed to explore further with an incisiononal/surgical biopsy of the suspicious area. She understood that I would be devastated if I had a mastectomy and the path report came out negative. Guess what? The chunk of biopsy tissue she took out was completely benign. I am convinced it was my healing of my spirit that has healed the body. I must be still monitored, of course, and my surgeon has recommended follow-up radiation — which I am refusing. So from this I advise others to address the spiritual causes of body problems, and strongly urge DCIS researchers to come up with better approaches and better options for those with high-grade DCIS in particular. I would even argue that high-grade DCIS is a different category of disease from grades 1 and 2 altogether. Curcumin and wormwood might also be helpful. I have taking that, too. Wishing a great future to all of you ladies!!!
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ELLEN…OMG….this sounds so much like mine…..The surgery biopsy report was Inaccurate, didn’t dice the slide that needed to be examined and it was DR L. who spotted it. I sought him out because, I too, just felt uncomfortable with the initial biopsy report, just felt this is NOT right.! I had a lumpectomy and am on my way….I refused all other treatment!
God Bless US all and especially, Dr. L!
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I am thrilled to see the progress in DCIS research! Although we who have chosen active surveillance are still in the minority, perhaps this will encourage others to seek other alternatives for treatment! Thank you Donna, for sharing such important groundbreaking information!
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It’s so fantastic and wonderful that Dr. Esserman and Dr. Hwang have been honored like this by TIME. Now if we can just get the majority of mainstream doctors and surgeons on board, we’ll start seeing some real changes at the level of the doctor/patient relationship, where ALL options need to be honored and considered, including active surveillance. And of course the fabulous work you’ve done with DCIS 411 is a part of the circle of success and enlightenment.
I predict that the various breast cancer/ DCIS forums will one day add a new section called “active surveillance” and drop the fear tactics and name-calling that unfortunately has been a part of some of the breast cancer forums (which I, too, have experienced and decided not to subject myself to any more of their negative comments). Even though I have been recommended for biopsy since 2011 for “suspicious calcifications”, I have refused and continued to monitor the calcs. So far, there’s been very little change in their appearance, and I feel more and more vindicated every day that I didn’t rush to biopsy (and potential overtreatment). While there’s still a lot to be done in this field, headway is being made thanks to courageous ladies who took the time to do their homework and delve into this subject without fear or hysteria. And just lke you, Donna, Dr. Esserman and Dr. Hwang are definitely in MY TOP 10!!!
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informedconsent2014, I am so jealous that you did not rush into biopsy!
I had a stereotactic core needle biopsy almost 7 weeks ago and I’m still having discomfort/pain. I feel it even in my shoulder and in my arm! Of course, the biopsy doctor said shoulder/arm/underarm pain can’t be related to the biopsy (!!) and I was asked if breast pain was something I experienced before the biopsy. Um…NO! I was totally fine before it.
Good for you for not being scared into it the way I was!
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Hi Sara!
I am so sorry to hear of the painful side effects you’ve had from the biopsy. Many times, we as patients are not given informed consent prior to these invasive procedures, and I think the doctor telling you that your pain is not related to the biopsy is so ridiculous.
I hope your symptoms will improve soon and you can make informed decisions going forward. I always tell women not to rush into any sort of procedure related to potential breast cancer until they have fully educated themselves, and I know from this point on, you will do that. After all, you are HERE at this important informative site and you will have the confidence and courage to do what you feel is right for your personal health after taking into account all the data. If you feel that active surveillance is the proper path for you, then you have every right as a patient to do so regardless of what you are being pressured to do. If possible, maybe get a second opinion from Dr. Esserman in CA. I know it’s not always possible to do that, esp. now with all the challenges of travel and other matters, but maybe it is something you could look into if necessary.
In the meantime, I wish you great health and peace of mind. I am still very happy with my decision to actively surveil the small microcalcs that were found back in 2011. Without Donna Pinto and DCIS411, I wouldn’t have had the confidence to do that. Take care and keep everyone updated!
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Hi informedconsent2014, (Donna, and others!)
Thank you so much for your immediate reply. It was so wonderful to hear from a real, live person who understands!
Since I last wrote, I’ve seen another breast surgeon — basically just a lateral move from the last consultation I had, so of course I wasn’t expecting a different recommendation. It was still hard, though, to have someone else tell me I should have a mastectomy.
And get this — if I want to get reconstruction, I should consider getting the other breast removed and reconstructed *so that my breasts will match.* Yup, you heard that right. How can I believe anything these doctors are saying when they suggest something INSANE like that??
I know that I’m not going to get a mastectomy. I just need to do some thinking and figure out what my next move is. I may need to lean on the readers of this blog (and Donna) for recommendations of doctors in New York City.
I need to go to a doctor, not a surgeon. Surgeons want to do surgery. I need a doctor…but what kind? I don’t know that yet.
Informedconsent2014, what type of surveillance do you do, and how often do you do it?
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Hi Sara,
I’m so sorry to hear that you are being pushed into major decisions before you can think about things and make the best choice for yourself. I don’t live on the East coast , but if at all possible and you can go to CA for a consult with Dr. Esserman, that’s what I would do if I were in your shoes. Maybe Donna can recommend someone in NYC who can consult with you and determine the best course of action. In my case, I only do mammograms once per year to watch the small group of microcalcs that were first seen back in 2011. I do not have a mass, or lump or anything of that sort. The microcalcs have not changed in any troubling way since 2011, and last year my BIRAD score was dropped from Birad4 down to “probably benign, no biopsy recommended”. That could change, but in my case, surveillance has proved to be a safe alternative to having a biopsy.
I know it’s really difficult to be in your position and possibly have to get on a plane and travel for a proper consultation but unfortunately, I think that’s what a lot of people are up against. The average doctor or surgeon who isn’t up on the latest developments in breast cancer treatment simply are not going to be able to give you proper advice. So, that’s why I recommended seeing Dr. Esserman in CA. Or hopefully if there’s a doctor or surgeon in NYC who is on her level, maybe Donna knows someone to recommend. Good luck, hang in there, and don’t do anything huge until you truly know all your options and fully understand with informed consent what your best treatment plan is, or if surveillance is the best plan. Sending positive thoughts, I’m sure everyone here will do whatever they can to help and advise you!
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Reblogged this on One Health of a Life and commented:
Donna Pinto and I were in a meeting last week with other patient advocates, researchers and clinical trial staff to discuss the new DCIS COMET trial that is in development. Thanks to Shelley Hwang, Ann Partridge, Alastair Thompson, and Jennifer Gierisch for including us in the Study Leadership Team!
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Thanks so much for all the wonderful comments, story-sharing and re-blogging! Health and blessings to all! 🙂 Donna
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