I’ve lost track of the number of women who’ve told me something like this: “My mammogram experience was horrible. They called me back with this get-in-here-right-away sense of urgency. I was terrified. They took lots of pictures, talked about calcifications. I had one biopsy, then had to return for another. The suspense was horrible.”
And after the biopsy…
“I was told I had DCIS (ductal carcinoma in situ) and that it’s really not the same as breast cancer, but it needed to be removed anyway because having DCIS increased my risk for regular breast cancer. I had the lumpectomy, then radiation. One doctor suggested chemotherapy, another recommended removing both breasts. I said no, but now I go back every few months for a recheck. And I think about this all the time.”
It’s helpful to know a few things about DCIS. First, it’s not the same as the invasive breast cancer that’s the second leading cause of US cancer deaths among women (after lung cancer). Invasive means it can invade (spread to) other tissues in the body.
“In situ” is Latin for “in place,” meaning the cancer cells have not spread to nearby healthy breast cells. Yes, it would be clearer if they’d dropped the “in situ” and simply referred to it as non-invasive.
You might be surprised to learn that DCIS is a relatively new condition. Since it’s virtually never felt as a breast lump (it’s too tiny), doctors became aware of it only with an increase in screening mammograms. Physicians saw calcium clumps, most of them completely benign and of no significance. Other calcifications contained cancer cells apparently trapped inside a milk duct.
The big question was how to judge the significance of these cancer cells and what the future held for a woman with DCIS. When doctors first started seeing DCIS on mammograms, it was regarded as an early stage of cancer and treated very aggressively. This meant surgery (lumpectomy or mastectomy) and radiation therapy and possibly taking hormone-blocking agents (more on these below).
Some doctors suggested bilateral mastectomy (surgical removal of both breasts) and others chemotherapy, the latter quickly discounted because by definition there was no evidence of cancer spread.
Some reassuring good news appears
The good news about worrisome mammograms and DCIS was published this week in JAMA Oncology, which reported on an immense 20-year study that tracked what actually happened to 100,000 women diagnosed with DCIS. The top take-aways about breast calcifications and DCIS are:
- By far the majority of breast calcifications are harmless, benign, and do not require a biopsy. By having access to your previous mammograms, a radiologist can determine if the calcifications are stable and can simply make a note about them for future mammograms. This is called watchful waiting and it’s a perfectly reasonable recommendation.
- First-time (or changing) calcifications might represent DCIS, the answer determined by a breast biopsy. However, don’t let anyone tell you that DCIS is the same as invasive breast cancer or that it will definitely lead to invasive breast cancer. This is simply not correct.
- Among the 100,000 women diagnosed with DCIS, the death rate from invasive breast cancer was 3.3%. This is the same death rate from invasive breast cancer as in women without DCIS.
- Women with DCIS can be divided in two groups:
High risk (20%) Women who are black or under age 35 or who have a specific hormone receptor cell type.
Low risk (80%) Everyone else. Essential to underscore here that 80% of women with DCIS are in the low-risk group.
DCIS therapies for the 80% low-risk group
This depends on the cell type (whether hormone receptors are positive or negative). Treatment can range from endocrine therapy (such as taking the estrogen blocker tamoxifen) to simple lifestyle changes (exercise, diet, alcohol reduction, avoiding post-menopause hormone replacement therapy). The study found that more aggressive treatments, including lumpectomy and radiation, conferred absolutely no long-term survival advantage.
DCIS therapies for the 20% high-risk group
Lumpectomy/mastectomy/radiation/hormones unfortunately did not reduce the chances of dying of invasive breast cancer after ten years. Regardless what course of therapy is undertaken, the high-risk group remains twice as susceptible to ultimately dying of invasive breast cancer as the general population (7.8% vs. 3.3%). But being high-risk DCIS doesn’t mean you’ll die of invasive breast cancer—it just means that you’re at greater risk than the general population.
I think the fear-mongering about breast calcifications and DCIS, especially over the past few years, is inexcusable. Even before this study was published, oncologists knew that the majority of women with DCIS were not on an inexorable road to a fatal invasive breast cancer. Nevertheless, women have told me that their doctors urgently wanted to schedule them for a lumpectomy and that radiation treatments were scheduled as they were leaving the hospital.
The future with DCIS
What will likely now occur as the result of this review of 100,000 women with DCIS:
- If you’re a low-risk or average-risk woman having a mammogram and some new clumps of calcium are seen, your doctor may recommend a few months of watchful waiting or an ultrasound-guided biopsy.
- If you’re low-risk or average-risk and found to have DCIS, you’ll be advised about healthful lifestyle changes and, depending on your hormone receptor type, be offered hormone-blocking medications.
- If you’re a low-risk or average-risk woman with DCIS and you’re offered lumpectomy and radiation, get a second opinion.
- If you’re a high-risk woman (under 35 or black or receptor-positive) who has DCIS, you’ll be offered a more aggressive program, likely lumpectomy followed by radiation. This program has been shown to reduce the recurrence of DCIS but not–repeat not–to affect your risk of fatal invasive breast cancer. You’ll still remain at twice the risk of the general population. A perfectly reasonable question: if you’re high risk, is any treatment justified? The answer is yes because it has also been shown that a very tiny percentage of DCIS in high-risk women can change to actual invasive breast cancer. Thus, if you’re in this group you’re better off having the lumpectomy. Just remember that no matter what choice you make, you’re at a higher risk for breast cancer than the general population. If something more drastic than lumpectomy and radiation is offered (such as mastectomy), do get a second opinion.
In general, if a doctor is frightening you about the DCIS possibilities, always get a second or even third opinion. I don’t think fear serves any useful health purpose.
Be well,
David Edelberg, MD
I recently had a breast biopsy for suspicious calcifications BiRads 4b. When I asked the radiologist if they do “active surveillance” for DCIS she said “no” and that she was not aware of any breast cancer treatment centers that do so. The JAMA study has been out since 2015 & women deserve to know ALL of their treatment options.
My biopsy results come back benign but if they hadn’t I would have chosen to work with a DCIS literate doctor like Dr. Laura Esserman (director of the UCSF Carol Franc Buck Breast Care Center). “Active surveillance” is an alternative to lumpectomy, radiation and hormone therapy at UC San Francisco.
The COMET Study is the first large phase III randomized clinical trial in the United States (US) to look at different management strategies for low-risk DCIS. It will enroll 1200 women with low-risk DCIS at about 100 sites throughout the US. https://www.cometstudy.org/
Hopefully the COMET Study will support the findings of the JAMA Study and end the rush to radical life changing treatments like lumpectomy, mastectomy and radiation.
Thank you for keeping us up to date on current scientific research!
Susan M Hall
Hi
Answers to this and similar questions are on the Susan Komen website which contains a lot of information
Dr E
This information deals with specific hormone types in invasive breast cancer. Since we are talking about DCIS, what is the relationship between HER2 status and how aggressive DCIS is? Thank you.
Chris
What is the specific hormone receptor type?
Chris
Hi Jude
The hormone receptor cell type is determined from the biopsy sample. Yes, you need to wait until after you have a DCIS diagnosis
Dr E
I imagine many of us who have not had experiences such as those you describe are wondering just what is “a specific hormone receptor cell type,” and how and when one learns which type they have. Will we have to wait till AFTER we’re diagnosed with DCIS?
Jude
I had a lumpectomy and radiation for DCIS four years ago. I was suppose to have a DNA test because they said said if I had certain DNA sequence that goes with breast cancer it would increase my chances for ovarian cancer however my insurance didn’t cover it. I recently had surgery to remove what they thought was a tumor coming from my ovary but was actually a chocolate cyst that was stuffed between my bladder and uterus and pressing on my intestine and anus. On the MRI it looked solid 5 cm but when untwisted, it was strangling my ovary, damaging it making it blue, was more like 7- 8 cm.Unfortunately because the choc cyst was so compacted my Dr couldn’t drain it and she cut it out and I ended up losing an ovary. I think both myself and my doctor’s judgement were influence by my DCIS. I didn’t have any symptoms just bloating which is an ovarian cancer symptom and the choc cyst gave a false positive on the ovarian cancer test. After reading your blog it makes me wonder if I needed the surgeries however after the cyst removal a lot of inflammation went away and from reading your blog I know that inflammation is a killer.
Reina
Thanks for an informative piece on this topic. These days it feels like these “screening” types of testing has become a thoughtless money-making venture rather than being patient-centric “care.”
Joanne
Several years ago I went to the cattle call mammogram office in our town (women lined up in the waiting room), an aggressive technician (and a painful experience) and then a week later, an alarming letter demanding I return for a followup mammogram. I did so (adding another painful experience) and recieved yet another letter even more alarming (they had found an anomaly, and the letter also contained a chart with the four stages of breast cancer) and that I must get a biopsy asap. I just did not believe them. I understand that women get breast cancer seemingly with no risk factors, but…I had five children, all of whom were breastfed. My first child was born when I was 21. There was no history of breast cancer on either side of my family (parents). I never smoked, I was physically active, rarely ill, and ate a really good diet. So I went to an ob/gyn in town who gave me an ultrasound and a manual exam. She found nothing, but warned me that I should still get the biopsy. When I asked her about the high number of false positives, she countered that I would not want to be one of the few who who turned out to have cancer. She scheduled me for an appt. with the surgeon (which I thought was to talk to him, but found out later that it was to do the biopsy). I remained unconvinced, thinking that the number of false positives was too high, and that no one was talking or writing that this surgical procedure had its own risks of complications. I then went to a Susan Komen Breast Cancer Center in another town. The doctor did the mammogram and right away said there was no problem, nothing was there and that they had probably folded breast tissue on itself when they had pushed the breast into the recepticle for the mammogram. This happened six years before the AMA came out with their revised changes. So within a month I had 3 mammograms, which was not good…but at least I did not have the biopsy and lumpectomy. I refrained from getting another mammogram for three years.
aisha sobh
I had the calcifications, in situ cancer (mostly non-invasive~which I didn’t know until 6 wks after surgery when I finally talked to the oncologist, who, BTW, was an arrogant jerk~I felt like I was being interrogated!) I had a mastectomy and am glad I did since I also had Paget’s disease of the breast (a type of skin cancer) but I kinda wish I hadn’t had the implant as it’s painful sometimes, even 10 yrs later. I asked for a different oncologist and got a kindly old man, then when he retired, a compassionate younger woman. I did the Tamoxifen (terrible hot flashes!) but no chemo or radiation. I wish they would explain things better BEFORE treatment! My surgeon was very good and let us ask all the questions we wanted to, but she didn’t know what stage cancer I had. I thot it was worse than it turned out to be.
mkgilbert