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Dec 22, 2019 11:09AM
Cas, I completely understand that you don't want to have a MX. I didn't want one either. But it is not correct that there are "no stats if it would ever come out of the ducts".
There have been several studies that have looked into this, and what is universally agreed is that there is approx. a 50% chance that recurrent DCIS will develop into an invasive cancer. A number of the studies have also found that the risk of recurrence and/or the risk of developing an invasive cancer is higher for grade 3 DCIS.
Here are some articles and studies that address this: Genome evolution in ductal carcinoma in situ: invasion of the clones
"Long-term follow up studies of patients with DCIS have shown a substantial difference in the progression of low-grade versus high-grade DCIS, with only 35% of low-grade DCIS patients progressing to have IDC over 50 years, while 50% of high-grade DCIS progressed to IDC over 3 years." Surgical Excision Without Radiation for Ductal Carcinoma in Situ of the Breast: 12-Year Results From the ECOG-ACRIN E5194 Study.
"Patients were enrolled onto one of two study cohorts (not randomly assigned): cohort 1: low- or intermediate-grade DCIS, tumor size 2.5 cm or smaller (n = 561); or cohort 2: high-grade DCIS, tumor size 1 cm or smaller (n = 104)....The 12-year rates of developing an IBE (ipsilateral breast event) were 14.4% for cohort 1 and 24.6% for cohort 2. The 12-year rates of developing an invasive IBE were 7.5% and 13.4%, respectively....For patients with DCIS selected for favorable clinical and pathologic characteristics and treated with excision without radiation, the risks of developing an IBE and an invasive IBE increased through 12 years of follow-up, without plateau." Overdiagnosis and overtreatment of breast cancer: Progression of ductal carcinoma in situ: the pathological perspective
"The studies to date indicate that DCIS of all grades has the potential
to progress, though high-grade lesions progress more rapidly than lower
grade lesions and are more likely to lead to metastatic disease and
." Characteristics associated with recurrence among women with ductal carcinoma in situ treated by lumpectomy.
"The 5-year risks of recurrence as invasive cancer and as DCIS were 4.8% (95% CI = 3.7% to 6.8%) and 4.8% (95% CI = 3.8% to 5.8%), respectively, for women with low-nuclear-grade DCIS; 11.8% (95% CI = 9.9% to 14.1%) and 17.1% (95% CI = 15.5% to 18.7%), respectively, for women with high-nuclear-grade DCIS..." Ductal Carcinoma In Situ of the Breast: Controversial Issues
(1998 - this is old but the data makes the point that the risk of recurrence is very high with small margins and high grade DCIS)
Eight-year probability of local recurrence by treatment: Nuclear grade 3 (high nuclear grade) (n = 185), Excision only
Margins ≥ 10 mm (n = 56): 6%
Margins = 1-9 mm (n = 71): 39%
Margins < 1 mm (n = 58): 73% Ductal Carcinoma In Situ: What Do We Know Now?
As for what happens if you forgo surgery, there are several trials currently underway, but here are the results from one earlier very small study: Outcome of long term active surveillance for estrogen receptor-positive ductal carcinoma in situ
"Retrospective review of 14 women...8 women had surgery at a median follow up of 28.3 months (range 10.1-70 months), 5 had stage I IDC at surgical excision, and 3 had DCIS alone. 6 women remain on surveillance without evidence of invasive disease for a median of 31.8 months (range 11.8-80.8 months)."
I know that there is a lot written about the over-treatment of DCIS. I don't disagree that some cases of DCIS are over-treated. But all DCIS is not alike, and there is no question that some cases present a very high risk of invasive cancer, whereas other cases present a much lower risk. Just as it's not necessary for someone with a low risk diagnosis to follow the treatment protocol designed for those with an aggressive DCIS (this is what all the 'over-treatment' articles are talking about), it is dangerous for someone with a high risk diagnosis to follow the treatment protocol designed for those who have an indolent DCIS.
Your DCIS is grade 3. Your DCIS has recurred twice (if your biopsy comes up positive). If this second recurrence is still DCIS and not yet invasive cancer, you should consider yourself very lucky. I know others on this site who were not so lucky. Some now frequent the Stage IV forum, and some are no longer with us. That's not to scare you - from where you sit today, the odds that you will progress to metastatic breast cancer are very small - but to make the point that there is a real risk. It's not an unknown. All that is unknown is whether your particular case of DCIS is one that will eventually break through the ducts and possibly even spread into the body, or whether your particular case of DCIS is one that will always remain DCIS. Unfortunately at this point in time there is no definitive way to answer this question, although some of the factors related to your diagnosis (high grade, 2 recurrences) lean towards the more aggressive scenario. If you are diagnosed again through this upcoming biopsy and if your diagnosis remains pure DCIS, you can choose to reduce your risk of mets to less than 1% now, or you can take your chances.
“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke