What now? Does size even matter?

Ductal Cancer In Situ - DCIS is cancer (even that is debated) stage 0 and is confined to the milk ducts. The cells are abnormal and are multiplying, but they are incapable of breaking out the milk ducts. Milk ducts are like strands of spaghetti and you might have these abnormal cells following the paths of several ducts - hence a large area. The size of the area might make you choose a mastectomy, if so, you may be given the option of a sentinal node biopsy, where dye is injected in the mass and tracked to see what lymph node/nodes pick it up first and it/those are excised and examined. This is usually only done in cases of DCIS when the patient chooses mastectomy - not because it is absolutely necessary, but because after a mastectomy it can't be done.  If the patient chooses lumpectomy, it is usually followed by radiation, but even that is a personal decision. Mastectomy for DCIS is usually only followed by radiation if the mass is very close to the chest wall. Chemotherapy is not given for DCIS, if however the mass is found to be estrogen responsive,  tamoxifen, which blocks estrogen from getting to the er responsive cells is recommended. Tamoxifen is a daily pill that at this point for DCIS is recommended to be taken for 5 years and that too is your decision.  BreastCancer.Org has not only these discussion boards but also vetted clinical information about diagnosis, surgery, radiation - what to expect and much info on DCIS. Sorry that you have been diagnosed, but know that we are all here to help you get through this.

I'm sorry you are going through this.  DCIS is scary and confusing.  But the good news, which others have pointed out, is that it has not spread to the lymph nodes and that is huge.  No chemotherapy. 

As for what's next, here was my process.  I had a team of three medical providers - a breast surgeon, a radiation oncologist and a medical oncologist.  They worked as a team.   My first consult was with the breast surgeon to discuss lumpectomy vs. mastectomy; if I had wanted or needed mastectomy, I had the option to meet with a plastic surgeon. I chose lumpectomy.  The radiation oncologist explained the radiation process to me. I did not meet with the medical oncologist until after surgery - he is the one who prescribed Tamoxifen (I am ER+/PR+ and pre-menopausal).  Along the way there were consults with my OB/GYN (birth control options), an MRI and a MRI biopsy.   My surgeon and my radiation onc. both talked at length with me about my choices and options.  And gave me stastics about those choices and recurrence rates; personally I found it hard to process those statistics having been on the "bad" side of them after my initial biopsy. 

I am over a year out from my last radiation appointment and physically feeling just fine.  My left pec muscles sometimes get sore with overuse, but otherwise, everything has healed very nicely. My scar has healed amazingly well.  My health is as good as before and I am doing all the old things I used to do - running, hiking, yardwork etc.  Tamoxifen has had some side effects (brittle nails, dry hair, and on occasion night sweats).  I feel very lucky.

If you have a friend who can come with you to your initial appointments and take notes, I'd recommend it. I found it hard to process all of the information at the time, and it was helpful to have a second set of ears and notes later.  I also wrote down all of my questions in a big notebook and brought them with me to appts so I wouldn't forget them in the moment. 

Beesie has some good posts on DCIS and options on this board. I don't know how to link them here, but perhaps someone else can or you can find them.

Good luck with your consult.  It does get better once you start making decisions and treatment gets underway.