Stage 0 (DCIS) Breast Cancer Experiences

Well, that would take a book--ha ha--but a highlight would be that I had never heard of stage 0 breast cancer. I thought it only came in stages 1 through 4. The first thing my doctor told me was that my DCIS (ductal carcinoma in situ) is not life-threatening. So I felt very lucky. When three different doctors recommended a mastectomy I went from feeling lucky to feeling very sorry for myself. I had to make my peace with something I considered pretty drastic for a non-life threatening cancer. Once I did, I went back to feeling lucky.

It's a wonderful diagnosis to have because the prognosis is so good, but you still have emotions and treatment choices that are similar to more advanced cancers. One thing I think is unique to stage 0 cancer is that you can feel a bit sheepish about it, and wonder if you're entitled to call yourself a survivor. I felt that way for awhile and I've talked to other women with stage 0 cancer who did too. But it's a big tent and the members are welcoming. I've never met a woman with advanced cancer who made me feel like I had "Cancer Light." Well, that would take a book--ha ha--but a highlight would be that I had never heard of stage 0 breast cancer. I thought it only came in stages 1 through 4. The first thing my doctor told me was that my DCIS (ductal carcinoma in situ) is not life-threatening. So I felt very lucky. When three different doctors recommended a mastectomy I went from feeling lucky to feeling very sorry for myself. I had to make my peace with something I considered pretty drastic for a non-life threatening cancer. Once I did, I went back to feeling lucky.

It's a wonderful diagnosis to have because the prognosis is so good, but you still have emotions and treatment choices that are similar to more advanced cancers. One thing I think is unique to stage 0 cancer is that you can feel a bit sheepish about it, and wonder if you're entitled to call yourself a survivor. I felt that way for awhile and I've talked to other women with stage 0 cancer who did too. But it's a big tent and the members are welcoming. I've never met a woman with advanced cancer who made me feel like I had "Cancer Light."

DCIS is often more difficult to deal with surgically than invasive cancer, although the prognosis is much better. It generally does not form a lump or mass, and sometimes there are not even any calcifications, so it is often difficult to get an appreciation of just how much disease is present. MRI may not always even be helpful in determining the extent of disease. I often tell my patients that DCIS may not be a threat to your life but it can be a threat to the breast.

However if you have a small focus of DCIS that can be removed with lumpectomy (and a good cosmetic result), it is very reasonable to consider lumpectomy with radiation therapy. When I was initially diagnosed with DCIS, I was told I would probably need a lumpectomy and radiation. Later, the breast surgeon recommended a mastectomy. I had a hard time understanding why I needed such a radical procedure. My doctor explained that the micro-calcification fields were extensive - thus a lumpectomy would leave me deformed. Also, the radiologist couldn't say for sure that a lumpectomy would successfully remove all of the micro-calcifications. When I realized that the mastectomy was necessary both for my health and as a means to a more successful reconstruction, I made the decision for mastectomy.