MAstectomy or alternative

Are you saying that your option is to leave the 4cm of DCIS in your breast?  Since DCIS can evolve to become invasive cancer - and there is no way to monitor if and when that happens - that is a risky approach.  

What was the pathology of the 9cm of DCIS that you had removed?  Was it low grade (grade 1) or intermediate or high grade?  Was any comedonecrosis present?  The larger the amount of DCIS and the more aggressive the pathology, 1) the greater the likelihood that some invasive cancer might already be present, mixed in with the DCIS (there is no way that an MRI or mammo would be able to detect this) or 2) the greater the risk that the DCIS will evolve to become invasive cancer within a relatively short period of time.

I had over 7cm of high grade DCIS with comedonecrosis. I'm small breasted and there was DCIS throughout my breast.  In the middle of all that DCIS, I also had a microinvasion of IDC - just a tiny 1mm spot where the DCIS had already converted to become invasive cancer. The only way to remove all the DCIS was with a mastectomy.  It was the last thing that I wanted, but with an aggressive DCIS that I knew was on the verge of breaking through the milk ducts, I knew that I had no choice. Had I not done that, I'm 100% certain that I would have ended up with a large amount of invasive cancer and at that point, my prognosis would have been completely different. 

For those who have a very small amount of low grade DCIS, the risks might be quite low to leave the DCIS in the breast.  But with a large amount of DCIS, the risks are greater, and if the DCIS is high grade and/or there is comedonecrosis, the risks are greater still. 

Wondering if you had radiation? I have been on the DCIS journey for over two years. Initially diagnosed grade 2 but Dr. Lagios (30 year DCIS expert pathologist in CA)  did 2nd opinion on pathology and called it grade 1. I recently had a lumpectomy and re-excision which left a "close" margin of .1mm. I had 4cm removed which looked quite deformed initially but it has totally grown back and my breast looks completely normal now just 5 months post 2 surgeries! Due to the close margin, I have had several opionions from surgeons (all telling me different things) -- one says another lumpectomy not possible (I am small size so mastectomy or just 3 week course of radiation; next says re-excision lumpectomy definietly possible with reduction/lift technology plus reconstruction (oncoplastic surgeon); next says just tamoxifen and monitor and says non-high drade DCIS is overtreated. If you want to PM me I can give you more details, resources and support other than the "standard of care." I was just recommended by my naturopath Dr. to research mistletoe shots. How long have you been taking them? I have done a ton of research on DCIS and have found a lot of peace with my decisions. I also had a RODEO MRI 3 month post op and it was clear. These are really really tough decisions. Glad you have taken the time to research and ask for support! ~ Donna