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Roughly 65 million women go through mammograms every year, which has helped reduce breast cancer mortality rates somewhat. However, experts worry about overdiagnosis and overtreatment for women with noninvasive ductal carcinoma in situ (DCIS). This diagnosis indicates a lesion in the milk ducts that does not have the potential to spread and cause symptoms unless it progresses to a more invasive form. Doctors have been arguing about the best way to treat this condition.
Comparing Monitoring to Surgery:
A new study compared active monitoring to guideline-based surgical treatment with or without radiation (JAMA, Dec. 12, 2024). In this study of nearly 1,000 women, almost 6% of those in the surgical treatment group developed invasive cancer in that breast over the next two years. Among those in the active surveillance group, the rate was 4%, demonstrating that active monitoring is as safe as surgery for women with low-risk ductal carcinoma in situ.
An editorial comment in the same JAMA journal questions the safety of this recommendation, however. The authors remain unconvinced that women with DCIS should skip surgery.
An Earlier Look at the Treatment for DCIS
Data published nearly a decade ago in JAMA Oncology raised questions about the best treatment for DCIS (JAMA Oncology, online, Aug. 20, 2015). About 60,000 women in the US are diagnosed with this each year on the basis of mammography.
Is DCIS Stage 0 or No Cancer at All?
DCIS is sometimes referred to as Stage 0 breast cancer, but there is debate about whether these abnormal cells lining a milk duct in the breast should be considered cancer at all.
The research used 20 years of follow-up data on more than 100,000 women diagnosed with DCIS between 1988 and 2011. Many of these women had been treated with lumpectomies. Others got mastectomies or radiation.
No Difference in Survival Based on Treatment:
The method of treatment did not make any difference in the likelihood that a woman diagnosed with DCIS would later die of breast cancer. Just over 3 percent of the women had died of breast cancer after 20 years, regardless of treatment.
Some Women Were at Much Higher Risk:
Women under 35 at the age of diagnosis with DCIS were 17 times more likely than women without such a diagnosis to die of breast cancer within 10 years. African American women were also more than twice as likely to die of breast cancer after a diagnosis of DCIS than women in the general population.
In 2015, we wrote:
“Studies are needed to determine if treatment can lower breast cancer mortality rates in women diagnosed with DCIS.”
Unfortunately, that statement is still true in 2024.
Shirley
I’m 90 years old, have outlived my 5 siblings (all younger) and recently I found the scary lump. I’m otherwise in perfect health. When I was having my 6 children the dr. said if I would breast feed, I’d never have to worry about cancer. So I did…until each one of them bit me. He lied!
I’ve decided (with the help of my dr.) not to have treatment. I will continue to take my 1/2 mile walks morning and evening and keep a healthy diet. I know that no one can predict what the outcome will be, but my dr. agreed that sometimes, at my age, the treatment is worse than the disease.
Janis
When I was diagnosed in 1998 at age 45 with DCIS, I was told I had 3 options:
1. Do nothing surgically but get mammograms every 6 months to monitor any changes. (Breast cancer typically develops and grows faster in women under age 50 compared to older women.)
2. Get a lumpectomy and radiation.
3. Get a mastectomy.
I immediately ruled out doing nothing. Two of my friends–one 5 years older than me, one 2 years younger–had recently died of breast cancer. Like me, they had no family history of it. One of them had had an initial biopsy showing a mix of DCIS and invasive cancer. Additionally, I had dense breast tissue, which can hide cancerous lesions from radiographic view.
I eventually ruled out a lumpectomy and radiation as a result of conversations with several female medical professionals in the field of breast cancer, conversations with former breast cancer patients, and a personal aversion to radiation. The only one who tried to talk me out of a mastectomy was a male breast surgeon.
Fast forward to 2017. A routine mastectomy on my remaining breast and subsequent biopsy revealed DCIS and invasive breast cancer. My decision to get a mastectomy was much easier to make that time. Turned out I had Stage 1 of the disease. By the way, genetic testing in 2017 showed that I have no predisposition for breast cancer, or for that matter, any cancer.
Yeah, I really miss my breasts. But I did what made the most sense to me both times. I hope everyone else with a DCIS diagnosis has the opportunity to do what makes the most sense to them.
Teresa
I am 69 now. I was dx in 2017 with DCIS stage 0. And because my mom had stage 2 lump in her breast, and a cousin also had DCIS they wanted to do a lumpectomy. I had a biopsy first and multiple mammograms. I swear, in my head I thought my breast was on fire because of all the radiation. Life got in the way, and I put off the surgery. Finally, after genetic counseling which showed a high risk for breast cancer (BARD 1 gene) I had the surgery in 2019.
I kind of hid out from my doc and from having mammograms. Finally in 2022 under coercion from my regular doc I had a mammogram. They thought they saw something that looked like calcium deposits. But I didn’t go back. I moved halfway across the country.
New doc, new referrals, and another mammo, and something new . . . a breast MRI, then a biopsy on the other side of that same breast.
The biopsy damaged my breast . . .it bled badly under the skin and in the tissues of the breast. The breast surgeon said I still needed to have MRIs and mammograms. I put it off because all this time my breast hurt. Finally, this year I had a mammogram and an MRI…but, miracle of miracles, they couldn’t find anything. Needless to say no more breast radiation for me.
In the meantime my oldest daughter had genetic testing after her very first mammo at age 48 and was positive for a Bard 1 gene. In addition, she had lobular carcinoma in situ. Biopsy showed stage 2. She was treated for a year with tamoxifen pills. She had a radical double mastectomy and reconstruction and threw the pills away. No more mammos or MRIs for her.
Then in 2021, my Mom, at age 86, died having her second go round with a new and different breast cancer. None of us had the same type of cancer but the tendency of it to run in families is very real. Just be nice to your body, and stay healthy, is the only advice I can offer.
Carol
Wisconsin
I resisted a biopsy for more than 10 years after a mammogram showed calcifications in my breast. Finally, I gave in this year. I regret it. Not only did the biopsy cost more than $10,000 (of which I had out of pocked $1,500 from my insurance) – they diagnosed DCIS and did some scare tactics to convince me to get either a mastectomy or lumpectomy, plus drug treatments.
I said no. Not. No-way. Nuh-uh. After it was too late, I read that the American Cancer Society says DCIS should NOT be considered cancer, just pre-cancer. I’m furious at the big business of cancer in our country. Wish I’d known BEFORE the expensive biopsy. If 3% of women with DCIS die within 10 years of breast cancer whether they’re treated or not – that means 97% don’t. And if it’s going to kill me anyway, dang it – at least the vultures didn’t have a go at me before I die.
joanie johnson
seattle area
I cannot imagine why this is not considered cancer. This type was diagnosed on me in 2008, found against the chest wall and I had a mastectomy and some of my acquaintances went through similar diagnosis and opted for lumpectomy – all had problems and had to return for more radical surgery. Women please consider a mastectomy and don’t waste time or health energy. Can’t imagine why this is not considered cancer. Outrageous.
Corinne
Atascadero
Mastectomies don’t save lives for this group of patients. There is no difference between those who have lumpectomies and those have mastectomies in the number of women who eventually die from breast cancer. Those have mastectomies do have a greater risk of side effects. Recurrence can occur even with a mastectomy.
Helen M
Modesto, CA
Study of one: In 2007 I was diagnosed with DCIS in my left breast, near the nipple thru my annual mammogram. Maybe it was because the general surgeon of my medical group was being called back to duty on the 1st of 2008, but I was surely rushed into surgery. And, if he had his way, it would have been a mastectomy; however, I had my way and had a lumpectomy, tho I did have to agree to radiation. He also removed three lymph nodes because they looked funny. No cancer there and I am lucky that I did not get lymphedema.
I don’t get mammograms any more, why pile more radiation onto my breasts? I am 77, what would I do about another cancer? At that time they did no genetic testing and without it, I refused continuing treatment with tamoxifen. Sometimes I really wonder: if men were the victims of breast cancer, on the whole, rather than women, would treatment be so extreme? OTOH, look what they do with prostate cancer: medical castration! Tho with so many guys complaining, more doctors have adopted a wait and watch treatment, which is what they should be doing with DCIS.
Carey
Chicago
My grandmother got lymphedema 50 years after her cancer surgery! Make sure you do not get your blood pressure taken or blood drawn or other pressure and pokes in that arm. My mother was in the hospital for 15 days and had her pressure checked several times a day, IVs and blood draws at least once a day — all in the same arm.
k
north queensland
The more advanced technology becomes the more “bad” they will find. I choose not to go looking for cancer so refrain from any type of screening. If you look for it you will find something which could possibly frighten you into having unnecessary treatment that may kill you. Breast and prostate cancer, I believe, are over diagnosed.
Susan
Portland
I’m not sure why they think DCIS isn’t really cancer. That was my diagnosis in 1982 resulting in a modified eradicate mastectomy. In 2008, the same ER+ cancer returned in my liver and pleura. Believe me, Stage IV breast cancer is real even if it only started as DCIS. I am very fortunate that an aromatase inhibitor has had me in remission for the last five years, but I have no illusions that the cancer is gone. DCIS not really cancer? My foot!
Carol
This is so distressing! I had a lumpectomy and radiation in 2009 for DCIS. I had a brutal experience with my second stereotactic biopsy last year ~ dystrophic calcifications (possibly from surgery/previous Stereotactic biopsy) Was it all for nothing? Why should I continue mammograms? I’ll be 65 in January.