“I think the best way to treat D.C.I.S. is to do nothing.”
Steven Narod, MD, Senior Scientist, Women’s College Research Institute
Ductal Carcinoma In Situ Questions and Answers
Question: Is taking my time to carefully consider treatment options dangerous to my health?
Answer: No. There should be no debate about this. If you are given the impression you must rush into surgery, you should obtain a second opinion and consider a different doctor.
Question: What do I need to know about Ductal Carcinoma In Situ?
Answer: There is a lot your doctor does not know about DCIS and mounting evidence that the majority (possibly the vast majority) of DCIS cases are NOT life-threatening, and many (over half) are harmless. There are currently three studies evaluating whether “Active Surveillance” or “Watchful Waiting” may be best for low-risk patients. Most treatment centers are treating all cases of DCIS, regardless of risk level with surgery. You may be offered radiation and/or hormone therapies. You should know that the data shows these treatments have significant side effects and have no impact on mortality. They will NOT save your life. They can reduce the chance of reoccurrence but have no impact on mortality.
Question: Why hasn’t my doctor/surgeon provided me the information contained on this website?
Answer: Doctors disagree on whether current research findings should change treatment practices. Change is slow in the field of medicine. Despite mounting evidence that the standard of care is flawed, a definitive study that ends this debate has yet to be completed.
You can find an enlightening article in the New England Journal of Medicine that highlights the split opinion between Doctors and includes a poll where 20% of doctors would not choose surgery in the described case.
NOTE: The case for surgery presented in article treatment option #2 provides the following claims that we find misleading:
- “There are essentially no data on the outcome of DCIS managed with observation”. See research study with data showing 78% percent of untreated cases reviewed never progressed into invasive cancer. A meta-analysis of multiple studies similar to this one reports 57% of cases never progress to invasive cancer.
- The description of lumpectomy as “a brief outpatient operation with minimal complications.” This may be true for the surgeon, but there is scarce data on patient impact and this statement ignores the issues that are explained here
Your doctor does not know if your DCIS is harmless, as many are, or potentially fatal, as very few are. They lack any certainty that treating your DCIS will offer an improved breast cancer survival rate. Improved survival rates have been the assumption for 30 years but only now being challenged. Not knowing the harmless from the deadly, most doctors currently treat all DCIS as if it can kill you. However, some doctors are identifying what they believe are low-risk DCIS that can be monitored without surgery.
We speculate your doctor may not wish to make your treatment options complex or confusing, or may not want to tell you how much they do not know about DCIS or the possibility that their treatment options are ineffective or unnecessary.
A more cynical view is that economic incentives are promoting aggressive treatment (surgery, radiation, hormone therapy). Cancer treatment is a big business and aggressive DCIS treatment is meaningful to your doctor’s bottom line. Surgeons are paid to do surgery.
The only way to know for sure is to ask your doctor about these issues and what their opinion is.
Question: Until they figure this out why shouldn’t I just follow the standard of care?
Answer: Undoubtedly, many women will opt for the standard of care treatment based on their doctors’ recommendations. Black and white decisions provide a level of comfort in a frightening situation. But standard treatments are not without their own set of poorly understood risks and those risks are potentially life-altering. Patients need to know that their doctor’s recommendations may depend on which doctor they see.
Most importantly, treatments like surgery, radiation and hormone therapy, that have their own negative effects (both physical and psychological), need to be weighed against the risks posed by DCIS. Please read the article linked here.
The fundamental issue is if the best evidence available indicates that your Ductal Carcinoma In Situ puts your risk of death from breast cancer at or near that of any women found in the general population do you need surgery?
Putting this another way, if you were told 100 randomly selected women, had a 2% probability of dying of breast cancer during their lifetime, and 100 women with low-risk DCIS also had the same probability of 2 deaths, would you opt for surgery? The flaws in this logic may not seem obvious but if extended to the general population this logic would make it “logical” to perform surgery on all women.
When considering Ductal Carcinoma In Situ surgery, and in particular low-risk Ductal Carcinoma In Situ, you have to ask whether it makes sense to perform surgery on 100 women (almost all that would never die of breast cancer) to possibly save the life of one or two patients. Do you continue to perform surgery when the best evidence available suggests you may not be saving any lives?
There is even evidence that a large percentage of women who die of breast cancer, die regardless of treatment (i.e. die from breast cancer without any reoccurrence of cancer in their breasts, meaning cancer had already spread to other parts of the body at the time of diagnosis). Thankfully, this represents a very small percentage of Ductal Carcinoma In Situ cases.
Question: Why should I believe you?
Answer: You should not believe me. You should read what the research has to say and read what some courageous breast cancer researchers and doctors are saying. You should discuss these findings with your doctors. You should push back and demand answers and decide on the best care for you and not necessarily the care that is given to everyone. Many treatment centers and their staff will direct you into surgery with little or no discussion of whether you may be a candidate for watchful waiting or active surveillance. Please read the testimonial on this site for a real-life example. Judge for yourself if the patient was well informed by the medical team. Judge for yourself if the patient’s opinion and decisions were respected.
Question: How did we get here?
Answer: To understand how we got here, look back at the initial logic employed that established the standard of care. A “must read” article about myths that will not die found here explains how trained professionals cling to myths about cancer screening and treatment. Long ago doctors assumed that abnormal cells, sealed off in the breast ducts (DCIS), where a precursor to invasive cancer that could lead to life-threatening cancer. The logic was and still is, that if you cut out those abnormal cells you would reduce the chance of them breaking loose and becoming invasive, and ultimately reduce deaths. This is pretty simple logic. Nip it in the bud and save thousands of lives, and so for the last 30 years we have treated approximately 60,000 women a year to prevent DCIS progression to invasive cancer, yet research shows there has been no associated decrease in the incidence of invasive cancer. Think about this, 60,000 annual surgeries to reduce cases of invasive cancer but no associated decline in invasive cancers.
You might assume that the focus of breast cancer treatment is on saving your life, but in the case of DCIS what you may find is a focus on preventing reoccurrence. Why is this? Isn’t the bottom line for the patient mortality? Doctors continue to “nip in the bud” when research indicates that the majority of the buds they nip are harmless and the vast majority will never prove fatal even if they progress into invasive cancer. The truth is there is very little evidence of what happens to a Ductal Carcinoma In Situ patient if the Ductal Carcinoma In Situ is not treated (they almost always are treated with surgery). The evidence that does exist indicates that between 57% and 78% of cases never become invasive cancers.
Question: What should I read first to educate myself?
Answer: I suggest you start with two NY Times articles: “Doubt Is Raised Over Value of Surgery for Breast Lesion at Earliest Stage” and “Breast Cancer Treatment and D.C.I.S.: Answers to Questions About New Findings“ and then read Dr. Esserman’s Op Ed piece directed to her colleagues.
Read the New England Journal of Medicine article providing arguments for and against surgery and the rebuttals provided here.
Depending on your desire to drill deeper you can read many articles and studies in the Articles and Research section of this site which we try to keep updated as new information becomes available.
Question: How do I decide what to do??
Answer: Your choice of treatment is highly personal. Start with an honest discussion with your doctor, but do not allow him/her to dismiss these issues. The issues are real. If you choose the current standard of care with open eyes then that is the right choice for you.
If you wish to consider waiting and watching then it will be important to gain a better understanding of your specific Ductal Carcinoma In Situ. To carefully attempt to classify your Ductal Carcinoma In Situ, we suggest the following:
1. Determine if your doctor will be supportive and if not find one that will. We are compiling a list of doctors you can find at the bottom of our Research and Articles page (scroll to the bottom of page).
2. To determine whether your DCIS is low risk, obtain a second pathology opinion (DCIS is not pathologically easy to evaluate and errors are common). We suggest Michael D. Lagios- Breast Cancer Pathology Consultation (second opinion on Biopsy).
3. There are currently two genomic tests that attempt to predict the likelihood of Ductal Carcinoma In Situ progressing to invasive cancer. These tests are currently used to determine if hormone or radiation therapy can be skipped, however, we believe they can be useful to patients who have opted not to have surgery and wish to evaluate their risks of invasive cancer. The two tests are:
The Prelude DX test is the newer of the two and originally designed to test Ductal Carcinoma In Situ.
4. Once you have some idea of the likelihood your Ductal Carcinoma In Situ will appear as invasive cancer you may wish to explore the risk that cancer may kill you. I view the risk of dying from cancer like that of any other risk. I could die in a car crash but I do not worry about that. If my probability of dying from breast cancer is similar to that found in the general population, I am not going to worry about that either.
From a practical standpoint, to take a wait and see approach you likely need a lot of personal courage, support from those who love you and at least tacit support from your medical team. You could also seek the care of one of the following doctors who has shown the courage to challenge the status quo and openly discuss the issues surrounding Ductal Carcinoma In Situ treatment.
Breast Cancer Specialists
These specialists are known to have an open mind regarding active surveillance and the controversy surrounding Ductal Carcinoma In Situ treatment. Please advise us, in our comment section, of other doctors whom you feel provide a full spectrum of treatment options that include discussion of active surveillance
There are likely many others who also may support a more nuanced view of treatment options but may not be easily identified