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DCIS Treatment Plan
Had invasive removed with good clear margins but still have multiple small (2mm) pockets of DCIS (precancer/stage 0) after re-excision and recommendation is mastectomy/amputation.
I’m on Temoxifen currently and plan to take as long as possible, along with vigilance active surveillance. My invasive was grade 1 hormone positive slow grow and no longer on progesterone. No family history and genetic testing showed no mutations for any cancers.
I have already heard all the stories from women that go through with mastectomy for precancer but I would like hear from anyone who had residual DCIS and chose radiation, anti hormone treatment and active surveillance. Radiation oncologist said 28% chance of reoccurrence if we continue with original treatment plan moving to radiation or said differently there is a 72% of no reoccurrence.
My opinion is that if invasive came back, I would then get mastectomy but is my last straw and know at that point I did everything I could to save my breast and get more use out of my sexual organ with intimacy with my husband.
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My Breast Cancer Journey So Far (January–March
I wanted to share my journey in case it helps someone else who may be going through something similar.
It all began in January when a routine mammogram showed something suspicious (linear grouped microcalcifications). Naturally, this was a very stressful and uncertain time. In February, I went back for additional imaging with a second mammogram, which led to further evaluation and ultimately a biopsy.
After the biopsy results, my care team recommended an MRI for more detailed imaging. Following the MRI and consultations, I underwent surgery on March 13.
The past few months have been a whirlwind of appointments, waiting, decisions, and emotions. Through it all, I’ve been grateful for the care and guidance I’ve received, as well as the support of my family and medical team.
I’m still early in this journey and continuing to move forward step by step, but I wanted to document this experience and connect with others who understand what this process can be like.
My next appointment is April 17th. The radiation oncologist has ordered genetic testing on my surgical pathology to determine whether radiation therapy will be recommended as part of my treatment plan.
Additionally, my medical oncologist has discussed starting me on a hormone blocker, but would like to wait for the final surgical pathology results before beginning treatment. We are currently waiting on those results to guide in the steps in my care plan.
Welcome to Connect--glad to see you here. There is a lot of information here on DCIS. You can search on DCIS or DCIS Stage 0 and find a wealth of discussion in the Breast Cancer Support Group. You will also most likely get some useful responses here. Thanks for joining in.
Had Dcis with microinvasions in 2019. (Lumpectomy + rads).
December 2025 it had come back and I had my mastectomy with lymph node biopsy Mar 13. I was followed regularly with semi annual mammos and ultrasounds between the two episodes. Honestly, I didn't worry about it much and just got on with life. I'm back to yoga class 2.5 weeks after surgery.
The first time through the cancer conveyor belt, I was scared. This time I knew the drill and the only question in my mind was the difference between an "-ectomy" and an amputation.: the drain (and not having a shower for over 2 weeks) was a nuisance but quite bearable. Pain was manageable with Tylenol and Advil, and non existent after a few days both times.
It's hard not to worry but really, worrying only makes things more difficult. Let the conveyor belt get you through it.
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