Was anyone here diagnosed with just DCIS at first? What did your doctor recommend?
Excerpt: "The diagnosis of ductal carcinoma in situ (DCIS) has increased dramatically since the advent of mammography. Given that most cases of DCIS do not progress to invasive cancer, there is concern about overdiagnosis and overtreatment. However, there are no validated methods to determine which cases of DCIS will become problematic, and understaged invasive breast cancer is sometimes found at the time of excision. A number of novel randomized trials, including the LORIS, LORD, and COMET studies, are exploring the current treatment paradigm for DCIS."
Written by
missa13
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Therein lies the DCIS dilemma. At most 20-30% of those diagnosed with DCIS will ever have progression to invasive breast cancer. In fact, the alternative name is Stage 0 breast cancer. Could it sound more harmless? For those who have been diagnosed with DCIS, the "cure" for a Stage 0 cancer is so draconian. At a minimum a lumpectomy with radiation and at a maximum a mastectomy. A lumpectomy can require multiple surgeries. If clear margins aren't achieved in the initial surgery there may be a second or maybe even third surgery. And a mastectomy can profoundly affect and impact a woman's life. If there is a way to determine which DCIS will progress to invasive breast cancer is is absolutely that the studies begin.
I co-facilitate a support group for women with DCIS. While each of these women know that they are not likely to die from this disease they are having to make many of the same decisions as those women with more advanced breast cancer. What type of surgery? If its a mastectomy, what type of reconstruction? If its estrogen receptor positive breast cancer - should they take hormonal therapy? Over the course of the four years that I have been part of this group, the options for treatment have remained virtually unchanged.
When I was diagnosed with invasive lobular (1993) and given a lumpectomy, the treatment for DCIS was a mastectomy. Pretty crazy. My aunt (by marriage) was found to have atypical hyperplasia and told to have a bilateral mastectomy (mother died of breast cancer). Now we now that you do NOT get the exact cancer your mother had, and that DCIS is now being thought of as not quite cancer.
I favor lifestyle changes as the first step and created a protocol for myself that worked although it took years to find out exactly what would stop the recurrent breast cancer.
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