Women are often told lumpectomy is an easy surgery. One and done.
Yet… more often than not, this is NOT the case. In fact, studies report up to 70% of the time, a 2nd surgery is needed due to “positive margins” for DCIS.
It happened to me in 2011.
After a DCIS diagnosis in January 2010, I chose “active surveillance” plus holistic health strategies.
Fast forward to a “surveillance” mammogram in June 2011 — the alarm bells from doctors went crazy. Calcifications appeared to be growing along with a new area reported as “indefinite” calcifications.
Highly suspicious for malignancy, stated the report. Recommend biopsy of two areas.
I decided to put everything off and go ahead with our summer vacation plans visiting family in Martha’s Vineyard and Denmark. For five weeks, I spent a good amount of my vacation time digging into the research. I also consulted with a Naturopathic Dr. over the phone. She recommended an MRI and also she preferred an “open surgery vs a core needle biopsy” given my situation (known DCIS and now concern of possible invasive cancer.) A needle biopsy posed the risk of missing an area as happened in my case 2 years prior.
Suspicious for malignancy, the MRI report stated.
Deflated, I could feel the fear creeping in. For nearly 2 years, I was diligent with a strict whole food plant based mostly organic diet, and I never missed a day of exercise. My mind now kept thinking about my best friend Dana from college who recently died from cervical cancer. Her two young children were around the same age as mine.
Adding to the stress, my husband was about to change jobs (and insurance).
I decided to take my naturopathic Drs advice: skip the needle biopsy and schedule surgery to remove only the “highly suspicious area.”
Result: NO INVASIVE CANCER, but…
Two positive margins of DCIS.
“A 2nd surgery (re-excision) was needed,” the nurse told me.
Ugh.
I really wanted to be done with it.
Two weeks later, I succumbed to a re-excision.
Result: A “close margin” remains.
This is when my surgeon said to me:
“Your breast is like spoiled soup. It’s not worth saving.”
{WTF!!!}
I got several more opinions and mastectomy kept coming up.
My mind could not wrap my head around this… as DCIS was a “risk factor” — not “cancer!”
Thankfully, I dug further into the research and followed my gut.
I said “NO MORE!”
It’s now over 14 years and I have never had “cancer” — or any other breast issue. (See link to my updated story at end of this post.)
With everything I learned I began to feel angry at “the system” which leads to a never-ending rabbit hole of overdiagnosis and overtreatment — all due to mammography screening.
I would have made different decisions about starting mammography screening at age 40 had I been better informed.
I learned my situation having multiple surgeries for DCIS and then recommendation for mastectomy was not a rare case. Yet this enormous problem is often not disclosed upfront when women are frightened about “cancer” and highly encouraged to have immediate surgery due to calcifications and “abnormal cells” appearing on a mammogram.
Below are studies and articles highlighting this topic…
Reoperation Rates in Ductal Carcinoma In Situ vs Invasive Breast Cancer After Wire-Guided Breast-Conserving Surgery
“the risk of reoperation in patients with DCIS was 3 times higher than in those with IBC. The widespread use of mammographic screening will increase the number of patients diagnosed with DCIS…”
Lumpectomy Margins for Invasive Breast Cancer and Ductal Carcinoma in Situ: Current Guideline Recommendations, Their Implications, and Impact
“This inconsistent definition of a negative margin among clinicians has led to wide variations in the rates of re-excision after lumpectomy. In a study of 54 surgeons, the re-excision rates ranged from 0%-70%.6 Moreover, approximately half of these re-excisions were performed in patients with negative margins (no ink on tumor), with the apparent belief that a wider negative margin would further decrease the rate of local recurrence. Reducing the re-excision rate is an important clinical goal, because re-excisions have the potential to increase patient anxiety, increase morbidity, adversely affect cosmesis, result in patients opting for mastectomy, and increase costs to the health care system.”
Factors influencing suboptimal pathologic margins and re-excision following breast conserving surgery for ductal carcinoma in-situ
“Re-operation rates for ductal carcinoma in-situ (DCIS) have consistently been found to be higher than those of invasive disease, raising concern that patients with DCIS may experience worse outcomes compared to IDC patients.1 Reported re-excision rates for DCIS are highly variable, ranging from 14 to 70%,5 creating uncertainty as to the impact this disease has on patients and the healthcare system.
What is clear, is that increased access and adherence to screening mammography programs has resulted in more malignancies being detected, disproportionately with ductal carcinoma in-situ (DCIS).6 Thus, a clearer understanding of this disease and current treatment are required if outcomes are to be optimized.
While patient, pathologic, and surgeon level factors have been explored in their association with re-excision for invasive ductal carcinoma (IDC),2 fewer studies have been conducted to elucidate these factors for DCIS.”
Positive or close margins: reoperation rate and second conservative resection or total mastectomy?
“All patients with BCS between 1995 and 2017 were included. Patient’s characteristics, pathologic results, and treatments were analyzed. Reoperation rate, type of reoperation, second reoperation, and associated factors of reoperation, mastectomy, and third intervention were determined.
Results: We analyzed 10,761 patients: 1,161 with ductal carcinoma in situ (DCIS) and 9,600 with invasive BC. The reoperation rate was 41.4% for DCIS and 28.0% for invasive BC.”
Surgeon Volume, Patient Age, and Tumor-Related Factors Influence the Need for Re-Excision After Breast-Conserving Surgery
“Re-excisions are frequent after BCS and are influenced by surgeon volume, patient age, and tumor-related factors. These factors should be considered when counseling patients considering BCS, and also for quality assurance.”
Mastectomy or Margin Re-excision? A Nomogram for Close/Positive Margins After Lumpectomy for DCIS
“Anatomic extent of ductal carcinoma in situ (DCIS) may be uncertain in spite of clinical, pathologic, and imaging data. Consequently close/positive margins are common with lumpectomy for DCIS and often lead to a challenge in deciding whether to perform a re-excision or mastectomy.”
Tumor margins that lead to reoperation in breast cancer: A retrospective register study of 4,489 patients
The incidence of positive side margins was 20% in BCS and 5% in mastectomies (p < 0.001). Of these patients, 68% and 14% underwent a reoperation (p < 0.001). After a positive side margin in BCS, the reoperation rates according to age groups were 74% (<49), 69% (50-64), 68% (65-79), and 42% (80+) (p = 0.013). Of BCS patients with invasive carcinoma in the side margin, 73% were reoperated on. A reoperation was performed in 70% of patients with a close (≤1 mm) DCIS side margin, compared to 43% with a wider (1.1-2 mm) margin (p = 0.002). The reoperation rates were 55% in invasive carcinoma with close DCIS, 66% in close extensive intraductal component (EIC), and 83% in close pure DCIS (p < 0.001).
Ductal Carcinoma in Situ in Young Women: Increasing Rates of Mastectomy and Variability in Endocrine Therapy Use
“Bilateral mastectomy (BM) increased in frequency from 2004 to 2016 (11–27%). In women < 40 years of age, BM (39%) surpassed [breast-conservation surgery] BCS (35%) in 2010 with a continued upward trend.”
Double Mastectomies Unnecessary for Most DCIS Patients
“Despite a steady increase in prophylactic bilateral mastectomies, few women with ductal carcinoma in situ (DCIS) are at risk of developing cancer in the opposite breast, according to the results of a 10-year prospective study presented at the Annual Meeting of the American Society of Breast Surgeons (ASBrS).”
Double Mastectomies Don’t Yield Expected Results, Study Finds
“Doctors have been increasingly concerned that women are choosing bilateral mastectomy in the mistaken belief that it eliminates their future risk of cancer.
Double mastectomies made headlines in 2013, when actress Angelina Jolie had a prophylactic double mastectomy after being diagnosed with a BRCA gene mutation that vastly increases cancer risk.
But 95 percent of breast cancers aren’t caused by BRCA mutations. And most of the women who are choosing double mastectomies haven’t been diagnosed with a BRCA mutation.”
Despite adherence to a 2 mm margin criteria, re-excision rates remain high following BCS for DCIS, with 39% converted to mastectomy when re-excision is required. Intra-operative margin assessment does not appear to reduce re-excisions; in particular, surgeons should be aware of the limitations of specimen mammography for margin assessment in DCIS.
Influence of mammography screening on use of mastectomies in Denmark
Invitations to breast screening and information from public authorities and cancer charities have often promised that screening leads to less invasive surgical therapy [Citation1]. Since the purpose of screening is to find cancer earlier, when it is smaller, it may seem obvious that screening should lead to less invasive surgery. However, screening increases the total amount of surgery because of overdiagnosis of harmless tumours. It also increases mastectomies because of detection of carcinoma in situ, which in the UK constitutes 20% of all screen-detected cancer, and which is treated by mastectomy in 27% of cases compared to 24% of invasive breast cancers [Citation2].
Breast screening should be scrapped
Evidence points to the fact that cancer mortality rates are dropping due to improved treatment, not mammograms.
In February 2009 a group of 24 experts, which included eight professors of epidemiology and public health from around the world, wrote a letter to the Times, drawing attention to the serious harmful consequences of screening associated with the over-diagnosis of breast cancer leading to an increase in the number of mastectomies. Over-diagnosis implies the detection of small non-palpable tumours that, although looking like cancer under the microscope, do not have the potential to develop into life-threatening disease.
DCIS 411 