Newly Diagnosed DCIS Stage 0, Grade 2: Still reeling

The MRI and genetic testing will help a lot in deciding what’s next! Good to know your mom has not had a recurrence!
I was diagnosed 2 years after retiring, and I’m three years post surgery. I did a ton of research at the beginning. Joked with the radiologist that I felt like I’d completed a post graduate seminar in breast cancer treatment!
Wishing you the best! You got this!

@triciaot Oh Lord, I feel the same !!! back to school i go. some people think I'm over-reacting and making myself more paranoid. But the way I see it, I'm better informed to talk to my doctors. Cancer is Cancer regardless of the stage and it is a devasting, life changing diagnosis. Its my body, its my life, and its my choice. What i feel is so insensitive is people saying, "oh just cut them off and get a new set", or "just go flat". I cant for the life of me understand how that is a supportive comment. There are so many options, it is a little overwhelming, but mainly, I'm looking for best option to prevent a recurrence. If that means bilateral mastectomy, then so be it. Thank you for responding and thank you for the encouragement.

@birdie60 We are all different, and researching *everything* is my comfort zone. I believe I was calmer because I had done the reading.
People can say things, that I guess to them sound encouraging or supporting, but actually feels like a slap in the face. I told friends about my situation, it just seemed simpler but as time went on I said less. IDK maybe because this process can feel like grieving. And most of us are not very good at dealing with someone else’s grief.
Sure, there’s dealing with procedures, pain, side effects. But there is also grief about the change to our lives. And yes, there are worse things, and grieving can go on too long. But I think, recognizing it for what it is, taking the moment to feel it, then moving on is a powerful action.

@srvtexas as of now, I don' need either per the oncologist because I am estrogen negative. However, I'm going to wait until my MRI results this week and genetic testing.. hopefully they can rush that so i have results before speaking with the surgeon. Did you have lumpectomy with radiation ? Would you share about your experience ?

@birdie60 sorry for the late response. The lumpectomy went well. They also removed some lymph nodes just to make sure there were no cancer cells, which there weren't thank GOD!. Recovery went pretty uneventful, but you can't wear regular bra afterwards for weeks. Mainly sports bras. Then the radiation. This made me anxious because I went on line and looked at pictures of women that went thru radiation. I would suggest DON'T Do IT!!!. The radiation made my breast sensitive and actually makes the skin dark like you got a dark suntan. But thankfully it has lightened up since. As for the sensitivity, I found some silky feeling sleep bras to wear. Also light nightgowns. Nothing too heavy or too tight for sure. They will suggest a cream for you to use after each radiation session and I used it multiple times a day. I did read some women suggested wearing silk. For one its too expensive and hard to find. I ordered a couple of bras that didn't fit then the company would not let me return them. 🙁 So I would say don't bother. The surgeon did a good job and other than the scars you really can't tell too much difference. I will also say that the radiation does cause your breast to shrink some. So my right is a little smaller than my left. It's not that big of a difference. I hope this helps.

@birdie60 I'm in your same boat, diagnosed in January, DCIS Stage 1. I just posted my first note under DCIS/Nipple Removal/Active Surveillance. My surgery would necessitate full nipple and areola removal, because it is close to that area. Talk about reeling! They repeatedly say mine is low-grade and non-invasive, so surgical removal is to prevent it from ever turning invasive, which may or may not ever happen. So much to think about! I really want to consider actively monitoring it for awhile, but not getting the surgeon on board (although all other MDs I see have said it's a good idea). I had two surgical opinions (already--it's only been 2 weeks!)--with both local (because they set it up) and big teaching institution (my choice), hoping there was a different way to remove the DCIS without the partial mastectomy.

Ask your doctor to order an MRI.
My Gyn/ob, ordered mine because of breast cancer in my family. She felt the mammogram wasn’t enough. And she was right! It found DCIS at Stage 2 that was missed only six months before on a mammogram.
Dr Love’s Breast Book is the breast cancer Bible and explains a lot things your doctor doesn’t have time to talk about.
My insurance company nurse navigator was my lifeline. She was so much better than the hospital liaison.
Your breast cancer sisters here are good resources but do your own research. What works for me, won’t necessarily be your solution. Dr. Love’s book (7th edition) can be found on the internet. Lots of issues to consider.

@orienteer wow you've been able to move quickly in talking to people. I am hoping that you find clarity and peace about your decision. Myself.... I think I'm almost there, but waiting on 2 more test results before I commit in my mind. It's scary... I'm at Stage 0, but still cancer non-invasive. It would be nice to save my nipple and areola, however my DCIS location is closer to the chest wall and i also have a fibroadenoma in the same breast... I just want it all out.... I'm horrified of taking any radiation... so many have said they regretted it, b/c they ended up doing a Mastectomy later.... It truly is a personal decision. Stay in touch.. there are so many on this support group that have been wonderful sharing their experiences... Bottom Line is you have to do what's in your heart for you. You know your own body better than anyone. I'm right there with ya....
God's blessings and guidance for making the best decision for our own situations. :>)