Despite clear evidence from the most extensive study to date on DCIS — that there is no benefit to surgery, radiation and drugs (“standard of care” treatment for DCIS) — and despite significant harms of these treatments — doctors will most likely not be making any protocol changes.
During a KPBS interview, Dr Reema Batra, stated the “standard of care” will not change. Women will still be offered lumpectomy plus weeks of radiation or mastectomy when diagnosed with DCIS.
Whatever Happened to Doctors Following the Hippocratic Oath — “First do no harm?”
A NY Times article asks, “is there any reason for most patients with the diagnosis of DCIS to receive brutal therapies?”
ABC’s Good Morning America stated, “The study which followed 100,000 women for 20 years showed that these painful and risky procedures may be UNNECESSARY.”
DCIS is Not Cancer and Should Not Be Treated as Cancer
Dr. Esserman is one of a growing number of experts calling for change regarding the standard treatments for DCIS. She says, “DCIS is not a lethal condition. You are not going to die of it. So it’s important to know that you don’t have to do more than you need.” In an editorial regarding the latest study, Dr. Esserman states: “Given the low breast cancer mortality risk, we should stop telling women that DCIS is an emergency and that they should schedule definitive surgery within 2 weeks of diagnosis. The sum total of the data on DCIS to date now suggest that:
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Much of DCIS should be considered a “risk factor” for invasive breast cancer and an opportunity for targeted prevention.
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Radiation therapy should not be routinely offered after lumpectomy for DCIS lesions that are not high risk because it does not affect mortality.
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Low- and intermediate-grade DCIS does not need to be a target for screening or early detection.
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We should continue to better understand the biological characteristics of the highest-risk DCIS (large, high grade, hormone receptor negative, HER2 positive, especially in very young and African American women) and test targeted approaches to reduce death from breast cancer.”
In a previous CNN article, Dr. Esserman stated, “DCIS is not cancer, yet because the word “carcinoma” is used in the label, it often creates panic. To sit across from my patient and see her in a state of complete misery and anxiety once again brought into focus so clearly why it is important to be able to distinguish the variation in this disease. Why should she have to suffer the emotional trauma of thinking she has a fatal disease if that is most likely not the case? Why should she be subjected to invasive procedures unnecessarily? It is heartbreaking to see a woman — and I have seen it many times — go through this turmoil when the ability to ease her worries, without compromising her health, could be in our grasp.”
Need for More Studies
Dr. Shelley Hwang of Duke University is working on creating an “Active Surveillance” study. In a recent Elle Magazine article, she states how previous thinking about DCIS is “wrong” and why she has been working hard for more than a decade to “stop the freight train of overtreatment for DCIS.”
Surgeons and oncologists interviewed in recent news reports such as this San Diego Union Tribune article say this kind of study — one that randomly assigns women surgical treatment or active surveillance — is the key to understanding more about DCIS.
But until such a study is completed, standard protocol will not change. Doctors will use this “need for more studies” as the excuse to continue their over-treatment protocols.
What Women Today Need to Know if Diagnosed with DCIS
DCIS is massively over-treated. Over-treatment equals extreme harm physically, emotionally, spiritually and financially. Today, women must decide for themselves if they will go along with the “standard of care” because it is “policy” or if they will educate themselves, get more precise information on their individual case and make treatment and lifestyle decisions based on facts not fear.
Support and Resources
Please take the time to investigate options and learn as much as you can before rushing into aggressive treatments. There is great wisdom and support for you here:
DCIS — Beyond “One-Size Fits-All”
DCIS Integrative Support & Empowerment (Facebook Group)
DCIS Redefined: Dilemmas, Choices & Integrative Solutions
Donna’s Choice: Global Healing From The Inside Out (Facebook Group)
It’s so frustrating that the medical community is not making changes. I did the surgery and radiation and regret it. I keep waiting for a time bomb to go off—cancer because of the radiation. My left arm, the side of the radiation, is incredibly weaker that my right side. It is very problematic. At the time of my diagnosis, I researched and found this website. Because of the trauma that my family suffered (the death of a grandson and a heart transplant of another grandchild) I didn’t feel that I wanted to take any chances with my health. I’m doing fine now, but encourage other women to make a different choice than I did.
Thanks so much for sharing your personal experience Gaylyn — so sorry to hear of your arm weakness. As for regrets….we all have done the best we could with the information we had at the time. We trusted doctors and a medical system to help us, but through our experiences, we have learned and grown. Great that you are speaking out to others and encouraging more empowered and informed choices! Women need and deserve to know the truth!! 🙂 Donna
Thank you so much, Donna, for such an insightful and informative synthesis of recent progress regarding DCIS treatment.
I had a lumpectomy for DCIS under the care of a superb surgeon, but I declined radiation (with her support). For me, my decision to decline radiation was data-driven: based on the “number needed to treat” (NNT) statistic. In my case, radiation would have decreased my risk of invasive cancer by ~50% — which sounds great on paper… cut your risk in half! — but my risk was already quite low, so that, in my particular case, ~30 women with my risk would need to be treated, for just one woman to benefit.
It’s good that the over-treatment of DCIS is getting much-deserved attention, and hopefully an infusion of research funds in coming years. Though, some of the data has been out there for a while. I think DCIS is not unlike many other non-life-threatening medical diagnoses that one might encounter in her lifetime. It’s up to the patient to understand the risks involved, of treating, treating in different ways, not treating, etc. If your doctor isn’t providing you with the information to make informed decisions, ask for it. I’ve found that most doctors will send primary articles that shape their advice, if asked. Knowing the stats that matter to you – as an individual – in making treatment decisions (in my case, it was NNT), and how to find those numbers (in the literature, from your doctor, etc.) is empowering. Often, doctors have very little time to spend with any individual patient (a problem with “the system,” to be sure!) But the literature is out there, and most of it is publicly available. Takes digging, and some long nights on google and wikipedia. In an ideal world, someone would do this on our behalf. But I think the reality is that patients need to ‘take the reins,’ and find good doctors who support them in that endeavor.
Thanks so much for your intelligent perspective and comments Jen. Unfortunately many doctors are “selling” their services, procedures and drugs and are not fairly giving all the info….the scare tactics and pressures even for mammograms are ridiculous. I was pushed through a system of “standard of care” and had already had a “wide excision” surgical biopsy (essentially a lumpectomy) before even being diagnosed with DCIS. I was totally clueless and trusting of my doctor (as I trust a dentist when he says I have a cavity). I had no idea of looking into studies and literature until I was told the next “standard of care” was mastectomy or partial plus 7 weeks of radiation…that sounded outrageous to me. But I was now far down the rabbit hole — with a positive margin of DCIS and need for more extreme surgery and radiation. It felt so completely crazy and wrong and I am so glad I listened to my intuition……and then began to research like crazy. but even the mammograms and biopsies are too much. Not many women in the general public are very interested in hearing what I have been saying for the last 5 years….the media and the doctors pushing “early detection” is so loud….but the fact is….it is wrong….and I will continue to shout it out! Thanks so much for your support and encouragement. It is so wonderful to hear from women like you! 🙂 Donna
Wonderful article, as always, a great synthesis of the current facts that we already know about DCIS and overtreatment. As most of us here have found, it is WE the patients who are helping make the changes from the ground up. It’s disheartening when any doctor flatly states that the protocols will not change. YES, they WILL change! With the fabulous work being done by doctors like Laura Esserman and others, along with patients who are doing the necessary homework and digging, digging, digging, for the data, and insisting on an open dialogue with our doctors, the current protocols will absolutely change. They have to, change, because scientific proof and logic must guide this situation, not emotions or financial agendas. I hope to see the overtreatment of DCIS come to an end within a few years, and particularly a change in the BIRAD scoring system that is responsible for biopsy recommendations. Biopsy is the first invasive step to overtreatment, and as such should be a starting point for change in the protocols. The radiology profession needs to step up to the plate and get real about the data they use to recommend biopsy instead of protecting their own bottom line financially.
Fabulous comment “informed consent!” I could not agree more!! I had a BIRADS 5 from a mammogram that forced me to have to decide on a biopsy or surgery for the 2nd time. It was all LOW GRADE DCIS…..this is so wrong. They scared me that it could be invasive. The imaging needs to get better and the radiologists need to get better at deciphering what is really a dangerous looking spot and what is not. My story is proof that the current system is a total failure….any other woman in my shoes would have definitely had a mastectomy or at least several weeks of radiation due to the intense scare tactics. I was just very fortunate to have the wise counsel of a friend and holistic healer who knew more about cancer than the cancer docs! That’s why I created this blog. It is truly unethical what is going on. Imagine if we could sue the radiologist, oncologists and surgeons for over-treatment….it would stop real fast! Thanks again and best wishes for continued health of body, mind and spirit! 🙂 Donna
Donna, you are such a source of courage and support that it’s not really possible to put it into words. Even though I know it sometimes seems like a losing battle to change the standard of care for DCIS, it WILL happen. It has to. You are a crucial link to all of us out here who are working toward that goal.
I want to share something that I observed the other day. I was making an appointment for an MRI to evaluate an arthritic condition. The MRI is done at the same radiology group that I have my mammograms done. This radiology group does all types of radiology for all body parts – it isn’t just a mammography center. It does everything. While waiting on the phone to make the appt, I was put on hold for about 15-20 min. and had to listen to a continuous loop of ” GET YOUR MAMMMOGRAM TODAY! DO IT FOR YOURSELF! DO IT FOR YOUR LOVED ONES! CATCH IT EARLY! SAVE YOUR LIFE!” It was a typical example of the scare tactics that radiology centers use to drive women into mammograms. Why didn’t their recorded message talk about any other ailments that might benefit from screening? No…it was all about mammography. I certainly thought of you while listening to this nonsense, There’s no balance in the medical world, there’s no common sense, and yes, it’s all about the financial bottom line for radiology clinics. Mammography is their big money maker, so it’s not surprising that their “on hold” message focused on their big scare tactic money maker.
Someday, this nonsense WILL change and we all appreciate your blog so much! I have my next follow-up in January 2016 for the small group of BIRAD4 microcalcs that I have refused to biopsy since they were found 2011. I will continue to update and do whatever I can to spread the word of your blog and the truth about DCIS overtreatment! Hugs and continued health!
This information is extremely valuable and it infuriates me to no end that despite 20 years of research and the fact that the medical community has known for at least 10 years that DCIS is over treated nothing will change!! What are we to conclude? This is all about the money and the politics of breast cancer when I think I had lumpectomies radiation then mastectomy and reconstruction for low to intermediate DCIS and no residual disease is almost too much to take after this latest news. I think they are afraid of what a watch and wait approach will do to their pocketbook. I won’t have a mammogram on my remaining breast I’m concentrating on healing mentally and physically. Many thanks to Donna for the support and information.
Janet
Thank you Janet for sharing your experience and frustrations. And also your gratitude for all the info I share here! It really is a crime how they have treated us….and it really needs to stop. As “informed consent” said — the change will come from the ground up — from US! We are the ones that know how wrong it is….and we are the ones that will change things for women in the future. Share this blog and articles far and wide! Doesn’t matter if women aren’t ready to hear it….eventually the truth will prevail! Glad you have refused mammograms — this is where it all begins. Such a terrible ineffective and unsafe test. Women need to wake up! Glad you are focused on healing mentally and physically…and that is the blessing in this!.Love and light, 🙂 Donna
I feel so blessed to have found your site. I was recently diagnosed with DCiS -grade 1 and felt much the same as you have expressed. Stunned, confused, and feeling as though a mastectomy (as was recommended) was so drastic! How could that be my only option?? It just didn’t feel right. And so my journey began. I immediately began an 11 day cleanse to regain balance and health as well as prepare my body for what ever was to come next. I slowly started to find conflicting information regarding the over treatment of DCIS, and the different ways that people were choosing to treat it through diet and lifestyle change. Now, a month after my diagnosis I am calm and hopeful that surgery (amputation!) is not my only option. I am planning to get a second opinion with Dr. Lagios as well as Dr. Esserman. What fantastic resources you have provided! I am so grateful! I’m also interested in a referral in the Orange County area if there is one, that will support the “wait and watch” approach.as well as “active surveillance. If not, I have read through your previous posts that there are Dr.’s in SD that will do this? Any information in this area would be greatly appreciated as this is my current focus.
Thank you for all you do and share. You are lighting the path for so many people.
LIsa
Wonderful to read your comments Lisa. Thank you!! It means so much to me to know that this blog as well as http://www.dcisredefined.org are helping women diagnosed with DCIS! As for Drs in SD or Irvine who are practicing and supporting “active surveillance” — sorry to say I have not found any conventional oncologists or surgeons in southern CA. There are plenty of naturopathic Drs and nutritionists that are much more supportive and helpful!! Just learned about Bastyr Clinic in SD — very affordable naturopathic care. http://www.bastyrclinic.org/ I had my first consultation there last week and I am very impressed. I am also investigating MRI machines in San Diego as I have not found any “dedicated” breast MRI machines here. This was what was recommended by Dr. Lagios and I am trying to understand if there is a significant difference with the Aurora machines as studies have claimed. There are two places in Irvine/Laguna that offer Aurora dedicated breast MRI — UCI and Saddleback Memorial Laguna. Dr. Silervestein is at Hoag and he is great if you want to avoid mastectomy and choose to have both breasts reduced and lifted leaving a good cosmetic outcome rather than amputating a breast! But this is also quite extreme and probably unnecessary for most. I also believe it is worth a trip to UCSF to see Dr. Esserman or one of her colleagues. The whole system and approach to DCIS is far more advanced and intelligent at UCSF than what my experiences were in SD at multiple reputable hospitals. If I were on the East Coast, I would consult with Dr. Shelley Hwang at Duke or any of her colleagues. Very important to be under the care of doctors who are not pressuring and over-treating, yet also mindful of potential markers and red flags for invasive cancer. I have not seen a conventional doctor since my visit with Dr. Esserman Feb 2012. Have had clear MRIs for 3 years and this year had a clear thermogram and ultrasound. Will do another MRI soon and hoping to stay more local (SD). Please keep in touch and let me know if you have any specific questions along the way. Blessings, Donna
I have an ND that I have worked with in the past that has said she would support me if desired. She is located in Costa Mesa. I did have my MRI done at the UCI breat imaging center. I believe it was the Aurora machine you speak of above. Do you do your imaging in SF at UCSF with Dr, Esserman? Or locally? Not sure how to find the Dr.’s (who will support Imaging and alternative care) that are not pressuring, in my area. Or, is all of that something that can be done through the naturopath? So many questions!
Did you see the cover of time magazine this weeks. It’s cover is about DCIS..