DCIS Treatment Plan

It sounds like you had a lumpectomy and refused radiation and your doctor is on board. We all make the best decisions we can for ourselves, based on what our doctors find.
I personally would not let DCIS remain, but I already have a history with breast cancer. That would be my choice with hindsight.
Since only you can answer this, the question is “are you good with this decision?”

@auntieoakley
Definitely not refusing radiation bc had lumpectomies. My choice now is to continue with radiation and meds or amputation (which I would then not do radiation). I would do active surveillance ongoing

@billiemoore I am sorry, I misunderstood. I get it now. I did not have a mastectomy, but frankly I wished I had. I in fact wanted one. I did have chemo, radiation and endocrine therapy. I felt like I did everything possible to stop it. I did not have DCIS. I had invasive, but everyone’s cancer is different and every one has different priorities for quality of life.
Do you have the option of making whichever choice suits your life?

@auntieoakley no worries, sort of complex. I had invasive—now gone. They found DCIS only after I started surgeries.

We all have an option—doctors simply give recommendations and we decide the route. Mastectomy is a full amputation and that along with reconstruction are complex surgeries but cancer is also complex, unpredictable (no matter how much science is applied) and hard to know the future.

If radiation didn’t make future reconstruction should a reoccurrence occur, would be a much easier choice for me, as I would make every effort to keep my breast, nipples and not be paralyzed for life until it was necessary.

I was a grade 3 and finished radiation after my first surgery. My margins were not clear after radiation. It showed "persistant/residual" DCIS. I chose breast conservation and had a second surgery two months ago (New Surgeon). The post radiation healing is very slow - but I am happy that I did not have a mastectomy. Some of the DCIS removed were "faint calcifications"... It is good to get a second opinion. The preferred course of action for most surgeons is mastectomy. You have to find a surgeon who will work with you and communicate what is best for your situation.

@ritalu thanks for sharing. Did you get clear margins on the second surgery? Did radiation oncology know you had DCIS before he started radiation? Thank you

@billiemoore
Hi - Radiation Oncology was concerned about the margins after my first surgery. So I had an MRI. Because it was so only a month and a 1/2 after surgery, the MRI showed a lot of post surgerical tissue. We were told it was benign tissue, so we went ahead with radiation. Two months after radiation, the follow-up mammogram and biopsy found residual DCIS hiding close to the margins. This is so rare, and I learned that published guidelines suggest that adequate margins for DCIS should be ≥ 2 mm after breast conserving surgery followed by radiotherapy (RT). My margins were less than 2 mm. I found an amazing surgeon at UCLA Health, and yes, I am finally clear. It is taking a long time to heal due to the radiation, but it is worth the wait. I wish you the best of luck and try to remember that you have choices. It is good to get second opinions. It is cumbersome, but it is worth all the effort to find the right surgeon who will work with you. I would not due radiation until you know for sure that all of the DCIS has been removed. You are right, cancer is complex and DCIS is very tricky.

@ritalu thank you so much for your response

@billiemoore Absolutely. If you have any other questions, I would be happy to help you. Some of the 2nd opinions tried to rush me into surgery, but that was a red flag for me. I think any DCIS should be removed and if you are/were a high grade, I would definitely do radiation for breast conversation.