“The most benign-appearing forms of DCIS (for example, low nuclear grade, small-celled without necrosis, estrogen- and progesterone-receptor positive,c-erbB2 negative, etc.), if untreated, may never cause clinical disease. Less than 50% of low-grade lesions develop into invasive breast cancer over a 25- to 30-year period. This finding goes back to an issue raised earlier as to whether or not DCIS, and in particular, low-grade DCIS, should be classified as breast cancer.” Excerpted from Ductal Carcinoma In Situ of the Breast: Controversial Issues by Dr. Melvin J. Silverstein.
Despite the fact that the above article was written in 1998, not much has changed in regards to understanding best treatment for varying levels of DCIS. “Standard of care” is still generally a one size fits all approach — 6 weeks of radiation following lumpectomy or mastectomy for all DCIS patients.
I have done my homework. I have listened to all the sides. I have gotten multiple expert opinions. I understand the statistics and rates of recurrence with and without radiation therapy considering I have a “close margin” of .1mm after 2 recent lumpectomies.
In my opinion and experience, the current “standard of care” treatment that I received with 3 surgeries performed by wire-guided mammograms is ineffective (I had positive or close margins after all 3 surgeries). And I believe cumulative radiation exposure from excessive mammograms is harmful. (See my post: The Insanity of DCIS Surgery)
I have already had 11 mammograms in 6 years. If I continue having mammograms every 6 months as recommended, by the time I’m 50 I’ll have had 19 mammograms.
Radiologists, oncologists and breast surgeons claim there is little harm from radiation, especially the new digital mammograms. My Naturopathic Dr. told me that radiation can contribute to/cause thyroid disease and thyroid cancer — not to mention all the other possible long-term harm that is underplayed by radiologists, oncologists and breast surgeons. Please read this excerpt on mammograms from Breast Cancer? Breast Health! by Susun S. Weed
Dr. Oz recently did a show on The Increase in Thyroid Cancer. While the incidence of many cancers is declining, thyroid cancer is one that is steadily soaring, especially in women.
One of my goals is to advocate for women diagnosed with DCIS or those who are at high risk for breast cancer to be able to have insurance authorize dedicated breast MRIs such as AURORA MRI, automated ultrasound, and thermograms as ways to monitor low-intermediate grade DCIS. My breast surgeon told me, “You may get and MRI authorized once, but insurance will not substitute MRIs for mammograms for annual follow up.”
Amazingly, many oncologists and breast surgeons have never heard of the Aurora RODEO MRI. Through some persistence, I’m happy to report I had my first Aurora Breast MRI at UC Irvine a few days ago. After hearing my case, my primary care physician kindly ordered it and my insurance authorized it.
Expert breast cancer pathologist, Dr. Michael Lagios states: “Any ‘dedicated’ breast MRI is equivalent to the Aurora RODEO MRI.
I am choosing NO RADIATION & NO MORE MAMMOGRAMS! I choose dedicated breast MRIs as an annual monitoring tool. I have also had thermograms and ultrasounds in between. But more importantly I am focused on health-promoting “anti-cancer” foods & supplements, yoga, exercise and keeping toxins and stress away from my body, mind and spirit.
Huge thanks to Sandie Walters for referring me and other women to “dedicated” Breast MRI!
Since personally meeting Dr. Kevin Kelly, inventor of SonoCine Automated Whole Breast ultrasound in 2015, I have only done annual SonoCine for breast imaging. Prior to this, I was doing annual dedicated breast MRI and thermography. I stopped doing mammograms in 2011. Please read more at:
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Interesting info about the Aurora MRI. Unfortunately, I am unable to take MRI’s due to an allergy to contrast dye and iodine. Also, I’ve heard that the contrast dyes used in MRI’s can also be carcinogenic, so not sure how much better a choice MRI is vs. mammogram. It’s terrible that DCIS patients are being forced/pressured by the overall medical hysteria system to go this far with monitoring of DCIS. In my opinion, an every other year mammo ought to suffice, since we know most DCIS is very slow gowing, (if it grows at all). However, if it is something that works for you vs. getting a mammogram, then that’s great and you are to be applauded for your efforts to show women options in this extremely difficult and confusing time when many of us are learning the ropes so to speak. Continued good health, this is an AWESOME BLOG!
THANK YOU so much for your comment! It is so confusing and difficult to navigate what is best and least harmful way to monitor DCIS. I am constantly researching and trying to find out all the unbiased info. I am concerned about the contrast dye from MRIs as well. May we all continue to share the best information that can benefit all who are dealing with the uncertainty of DCIS. Thanks and continued good health to you too!
I have been following your blog ever since we spoke several months ago. I believe we were put in touch by the Osher Center….or perhaps the Decision Services program. In any case, I continue to do active surveillance for moderate grade DCIS. I am trying to talk Dr. Esserman/ Susie Eder into doing fewer mammograms so your information was timely.
I also have been accepted to the Genetic Counseling master’s program at UC Irvine. Working now to get the funding. I will probably switch my care from UCSF to UCI. Any recommendations for me? Thank you for this great blog. Take care,
Hi Desiree! Nice to hear from you. I was told that Dr. Karen Lane is an excellent Breast surgeon at UCI. She is a former colleague of Dr. Esserman. The Director of radiology there is Dr. Feig. He was cautioning me about Dr. Esserman after reading my MRI and learning that I was going to UCSF to see Dr. E. I’m sure it will be challenging to find anyone on par with UCSF at UCI — as far as taking the watchful waiting approach. Congrats on your masters program! I have just started on a Nutrition Certification program. Stay strong and healthy! 🙂 Donna PS: we met through the decision services program at UCSF.
Donna we were out of the country when you sent you great news. Wonderful! i can never thank you enough for starting all this information flow. It certainly sent me down a better path and saved me from a lot more invasive treatments. I also can’t t hank Sandie Walters enough either for telling you and then telling me about Dr. Lagios. Then the 1st person, top of the list, to really be thanked is my daughter Marcy for without her friendship with you, without her saying “Mom, I think you have the same thing (which I too had never heard of) as my friend Donna I might never have found all this wonderful information at all. Such a journey. Thank you thank you all!!
Great to hear from you Mary Jo! You are with me daily as I still have the mala beads you sent me hanging from my rear view mirror! We are all drawn together on this path…we are all grateful for each other…and the sharing of information, experiences, emotions and above all…health. May we continue to shine the light and pay-it-forward…together! Much love and gratitude, Donna
Hello, I came across your blog when I was searching for an alternative to mamo’s. I had DCIS in 2009, 2 lumpectomies, radiation. When I found your blog about the Aurora Rodeo MRI I was very excited. I am due for my next mamo May 13th and want it to be my last. (I swear, the last person who mamo-ed (like whammo-ed, HA!) me 6 months ago, squeezed me so hard I have had pain in my breast ever since!) but doing my own research left me scratching my head. There does not seem to be hardly any info out there from people who were also searching for an alternative, found this and are happy about it. And unfortunately, living in one of the largest cities in the world (NYC) there is not one hospital here who has the AR MRI machine. There is a place about one hour outside the city but they do many things there (breast not a specialty) and just because they have this machine does not mean they are good docs. So I am left feeling dismayed about this whole thing. Also when I spoke to someone at this facility, she said they do the AR MRI in conjunction WITH the mamo, which I don’t want to do anymore.
I was wondering if I could get your take on this and why you may think that all the big hospitals are not snapping these machines up, even if it is another way of seeing the breast as a second view, like the sono. thanks so much
Hi Tracy, I am glad your search led you here! I think the reason more hospitals are not getting the Aurora MRI machines is due to the expense. There must also be some serious tie-ins with the hospitals, the insurance companies, the pharmaceutical companies and the mammogram machine makers. The Drs are mamo pushers….all of them except Dr. Esserman at UCSF. I think it is important to have an experienced radiologist no matter what imaging you decide to do. I was called in to the Director of radiology at UC Irvine and also called on the phone another time by his colleague to try and convince me to do a mammogram despite my RODEO MRI being clear (Birads 2). I know too much now and there is just no convincing me otherwise. Of course the Docs will tell you it’s important to also have a mammo….this is all part of ensuring they don’t get sued…it is the standard of care and that’s that.
Here is a great article my friend Sandie Walters wrote about the Aurora MRI for our soon-to-be launched new DCIS website. Maybe it will help some. Also try castor oil pack for healing of your breast before and after any squashing, poking or cutting of breast tissue. It worked wonders for me!!
Unfortunately, mammograms miss 20-25% of all cancers. They also underestimate the size of DCIS in a third of all lumpectomy patients. When this happens, the surgeon misses some DCIS and another surgery is needed. MRIs, which use magnets rather than radiation, can find what mammograms miss. According to a 2010 JNCI article by Dr. Constance Lehman : “Over the last decade, research has confirmed that of all imaging tools, MRI has the highest sensitivity in detection of DCIS (compared with mammography and ultrasound).” Although MRIs are considerably more expensive than mammograms, avoiding a re-excision would not only be less costly but also less traumatic.
The Aurora RODEO MRI, offered at 35 locations in the United States, is a dedicated MRI, meaning it is used only for breast imaging. Its unique technology provides sharper 3-D images and better resolution than a standard whole body MRI. According to Dr. Steven Harms, referring to the RODEO MRI in a 2006 interview for Radiology Today, “We get three times the signal-to-noise ratio (SNR) of most 3DFT images. We’re using that SNR to improve resolution and improve the contrast resolution. And there are significant gains in both of those. The image resolution by the number of voxels we generate is three times that of what we had before. We also reduce scan time, which is less than half of what it was and contrast is about twice what it was before. It’s a considerable gain.”
In fact, a 2012 study by Dr. Bruce J. Hillman etal showed that, while the false negative rate for whole body MRI has historically averaged 15%, the false negative rate for the RODEO MRI is less than 1%. In other words, if a RODEO MRI finds no cancer, there is only a 1% chance that it missed something, while with whole body MRI there is still a 15% chance cancer was missed. This study also showed that while whole body MRI has been criticized for its high false positive rates, typically between 32 and 41%, RODEO MRI has a very low false positive rate of only 11%. This means if a RODEO MRI finds something suspicious, the chances of an unnecessary biopsy are much lower.
With such good numbers, the Aurora RODEO MRI is a highly accurate and useful imaging tool, especially for DCIS. With its 1% false negative rate, it can provide peace of mind as an annual screening device for higher risk patients. Its accurate 3-D mapping can also assist surgeons in providing more tailored excisions and biopsies of DCIS that cannot be seen on a mammogram, while its low 11% false positive rate protects patients from unnecessary biopsies.
I am a Nurse Practitioner in Atlanta, GA. I was diagnosed in January 2014 with stage 0 grade 2 breast cancer. I was advised by my breast surgeon to have a large lumpectomy after the deemed that the first lumpectomy did not get all the dcis and I did not have clear margins. I have lived in fear for over one year with the diagnosis. However, I researched DCIS and learned that their just was not enough information to justify (for myself) to further cut on my DCIS breast. I also told the surgeon that I would not participate in radiation (the standard of care). I could immediately discern that they did not agree with my choice. In fact my primary care MD sat me down and told me that with me being a provider I should make a more informed choice. He said he did not want my breast cancer to become invasive and spread to my lymph nodes (and this was my concern). I will tell you that I have gone almost all organic over this last year. I work out (walk) most days of the week. I have also taken measures to reduce the stress levels (as best I can) in my life. One could basically say that I have taken the wait and watch approach to breast cancer.
Today I went for my mammogram and the wonderful radiologist spent much time with me to address my concerns. My scan was clear. I believe he scanned me from every angle possible. HE SAW ABSOLUTELY NOTHING THAT CONCERNED HIM ON MY SCANS. I will continue to get scans even though I worry about the levels of radiation. I do not believe that enough studies are available on this diagnosis. Ladies, please be your own advocate for your body. I am not saying that this is the best approach for everyone. This is not to be construed as medical advice. I simply want to share my story.
Holly Ridgley NP-C
Please why are theere not enoughstudies being done on DCIS.I see my surgeon to morrow.Please is there any new news.
Here is a very recent article on DCIS (overtreatment):
Have you viewed studies from DCIS Redefined?
More news every day on the problem of overdiagnosis and overtreatment. Also DCIS is a heterogeneous condition and can not be treated as one-size-fits all. The studies about harms of mammography all conclude overdiagnosis is a huge problem. Another good recent article with studies: http://www.hormonesmatter.com/mammography-screening-educated-consumer-best-customer/
I would recommend a 2nd pathology opinion no matter what. Hope some info here has helped. 🙂 Donna
Also, another important new study/test: ONCOTYPE DX for DCIS
I recently underwent a lumpectomy, after having a needle biopsy on an 8mm DCIS. Path results said the lesion was “tiny” all margins were clear & NO INVASIVE CANCER detected. I saw oncologist who happened to also be a researcher. She told me about the two possible drugs, Tamoxifen & Anastrozole. She kept saying, but your lesion was only 2mm-that’s tiny!!” So I asked, “if you were me, would you take it?” She hesitated, said she probably shouldn’t answer that. So I told her I am leaving this HMO in a couple weeks, can’t you just tell me if you would take it if you were me?” She said “Probably not.” She went on to say that if I were to opt out of anything, I should opt out of the drug treatment rather than the radiation. I had not wanted rad, I told her, and referenced the recent studies on DCIS treatment. We read on the computer together about the pluses & minuses of rad. Before I left her, she told me ” no matter what you decide to do-either way, I think you’ll be fine.” I have decided not to see a rad oncologist. My insurance has a 6,000 dollar deductible & I can’t afford the treatments that likely won’t do much to protect me. I know I am taking a chance but after reading Dr Laura Esserman’s article, I remembered her saying “there is plenty of time” if you watch it. I am just hoping I can last until at least 65 , when I’m on Medicare before I ever have anything requiring surgery. I have no family history of breast cancer on either side of my family. So I feel pretty secure in making this choice. FYI, I had intermediate grade, estrogen receptive DCIS in the milk duct only. Do you think I am being reasonable in playing a wait & see approach?
HI Kristi, sorry I must have missed your post last year and just came across it. Thank you for sharing your story. How are you doing? 🙂 Donna
I am 40 and recently had a mammogram check up and the doctor found a 7cmx4.5cm calcification area on my left breast. I was requested to do a core biopsy and was diagnosed DCIS grade 2. Since the area is quite big the core biopsy only sampled a smart part so the the only suggestion from my doctor is to a lumpectomy or mastectomy.
What is interesting is I had a mammogram 6 years ago while I was working in China but I never knew the result so I called the hospital and asked them to pull out the record and it showed very similar large area calcification BIRAD -4 or 5 which means I probably had DCIS since 6+ years ago. I never felt anything during these 6 years, however, 2 weeks after the core biopsy and mammogram (I had a total of 6 shots on my left breast), I felt many new lumps and 3 really sore spots.
I did more research online and found that it is possible for core biopsy to spread cancer and makes the situation worse.
I decided to try Gerson therapy for a few months then I will see if I want to go for a surgery. But I will for sure not want radiation or hormone therapy afterwards.
Wow, that is interesting Annie about the calcification area for 6+ years. Great you went full force with Gerson Therapy! How do you feel now? Please keep us posted on how you are doing! 🙂 Donna
Hi Donna! First, I was wondering if you had a recommendation for a medical oncologist in SoCal. I am really struggling with the standard treatment for both rads and Tamoxifen. Based upon my low risk results for my Oncotype test, I was prepared to forgo both until they discovered that I actually have multifocal/multiple lesions, which I have been told increases my recurrence risk. (One of the validation studies for the Oncotype also seems to show that it didn’t work for multifocal patients. I am trying to get more info about this.) Second, my DCIS is intermediate grade, Er/Pr positive, but with the multifocal element, I am wondering if I would still be consider low risk by all the Esserman types…do you know? Thanks so much!
Hi there — I would recommend speaking with Dr. Christina Casteel at Sharp in San Diego. See info here: https://www.sharp.com/health-news/sharp-participates-in-breast-cancer-study.cfm
Hi! I just found your blog and am extremely interested in the Aurora Rodeo MRI. I have finished treatment and now found calcification on my mammo and would love to avoid more mammos and biopsies. I can’t find information anywhere at all on the internet about the locations. I emailed the Aurora company and is came back as not an email and I even called them with no answer. If you know the locations, please share!!! I ‘d greatly appreciate it!
Unfortunately I learned that Aurora was filing for bankruptcy. Dr. Lagios said any “dedicated” breast MRI is equivalent so that is what you can ask for in your local area. This means that the MRI machine is used for only the breast — at a breast imaging facility — and it is not used for other body parts by changing out a coil.
More recently, I have discovered another less invasive way to monitor any breast changes through an automated whole breast ultrasound called SONOcine. Please see my blog post here: https://dcis411.com/2017/01/10/bye-bye-mammograms-hello-sonocine-ultrasound/
Please keep me and everyone here posted as to where you are and what you find. We all have to help each other! Thank you for reaching out and best wishes for health & wellness!:) Donna
Hi Donna – I think I’m a little late on this thread but hopefully it will still reach you. First, thank you so much for your blogs and all the information you provide – it is enormously helpful.
I wanted to run this by you: I have always had calcifications and v dense breasts – 2 years ago I was told I needed a biopsy. It was the first time I’d ever had a result like this and it totally freaked me out so I had the biopsy within 2 weeks. It came back clear, which was great but I also felt I had gone through a lot unnecessarily. 2 years later – 2017 – I had another suspicious mammogram and biopsy was recommended. This time I balked at doing it – it’s unpleasant, invasive and I was sure it would be nothing again. I’m not someone who will blindly follow and I really questioned the need – friends told me I had to do the biopsy and finally I went for a 2nd opinion to a Dr (general practice) I trust. I asked her if I could get an MRI instead off the biopsy and she said that MRI’s don’t show DCIS but nonetheless she sent me for one and then told me to see a breast surgeon when I had the results. Did the MRI (it showed nothing suspicious), went to the surgeon who said ‘you can’t mess around with this – do the biopsy asap). So I did the biopsy – came back as DCIS – the surgeon said lumpectomy would be ok. Did the surgery – came back as 4.2mm Comedo with necrosis, High Grade, clean margins (9mm), Estrogen +. I then completed the radiation (I figured make sure everything is sorted in that area).
I’m sorry that was such a long explanation but here is my dilemma: I did the radiation willingly but I absolutely do not want to take any estrogen blocking meds (I’m post menopausal – hysterectomy 15 years ago) – I think it’s ridiculous that stage 0 is treated like a more serious cancer. My only issue is the ‘High Grade’ – do you think that makes a big difference? I just can’t see dragging this out by being on seriously heavy-duty drugs for the next 5 – 10 years. I also don’t ever want to do another mammogram!
I’d really appreciate any feedback you might have.
Thank you so much!
P.S. the wire thing before the surgery is absolutely barbaric and I cannot believe there isn’t a better way!
Studies have shown high grade DCIS to be more associated with invasive cancer. Two good resources for you: SonoCine automated whole breast ultrasound (see https://dcis411.com/2017/01/10/bye-bye-mammograms-hello-sonocine-ultrasound/) and also Elyn Jacob’s alternatives to Tamoxifen: https://elynjacobs.com/2012/01/15/natural-alternatives-to-tamoxifen/
Yes….the wire thing is the worst! With all the $$$$ towards BC awareness, you’d think they could invest in better, safer imaging and management of DCIS! 😦
Thank you so much for replying – I really appreciate it.
Both of the links you provided are great – I hope my oncologist is going to be receptive as I’ve decided I won’t be doing the AI’s or another mammogram (more than 25 in 14 years).
Thank you again for all the time and effort you put in to your blogs and websites – they are invaluable.
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