DCIS /Nipple Removal/Active Surveillance

If I had DCIS and was in your situation I would do more research about its over treatment (you have time) and then do some major lifestyle changes. Read Chris Wark “How Chris Beat Cancer” and Dr Jean Simmons “The Smart Woman’s Guide to Breast Cancer.” Here is an interesting article: https://nutritionfacts.org/blog/overtreatment-of-ductal-carcinoma-in-situ/

@orienteer I would feel the same if I were you! Here are some things that might be a consideration on your decision -

I’d want more detail about why they recommend a lumpectomy for a small DCIS 0, grade 1, ER+ lesion? These days active surveillance is often suggested, maybe starting hormone therapy to see if it regresses. I believe AIs can reduce lesion size in ER+, perhaps making it possible to leave the nipple in place?
If you are pre-menopause, though, that does involve more issues. Or, there may be other reasons that they suspect this lesion requires surgery now.

Have you had an MRI? I’d probably want one before making that decision.

You might want a second opinion from a highly rated comprehensive cancer center. In fact, you really might want to do this if you think you might continue to question whether you made the right decision. Second opinions are not unusual. They involve paperwork, sharing health history (from electronic health record), sending scans and biopsy if available (most can be done by facility sharing once you give approval, you don’t need to actually mail anything). Insurance usually covers 1-2 second opinions, but out of pocket isn’t terribly high. Since most lesions can’t be felt, they probably won’t need you to have a physical visit. You might want to ask for a video visit, though, so you can hear the results from the physician.

In 2022 when I was diagnosed with a similar DCIS, the recommendation was for lumpectomy, radiation, hormone therapy. The cancer center where I go has changed their guidelines and they now more often suggest active surveillance. In my case, I might have still wanted the surgery, as the local radiologist reading my diagnostic mammogram miss-labeled the lesion as an unusual lymph node. A MRI caught what the mammogram missed for the type lesion my body grows - but I’d be concerned that it would be missed again if the only surveillance I could get would be mammograms.

@triciaot This is all great insight! I haven't had an MRI yet, and am making an appointment with a medical oncologist to discuss. Thanks for caring!

@orienteer I agree with @triciaot with an addition from my personal history.
I was young, in my 30’s when I was first diagnosed. This means I had a lot more years to live with the decisions I made. I honestly wish I had decided to treat more aggressively in the beginning, although in my case I would have had to fight the medical establishment and chose to accept the less aggressive surgery.
The best doctor I ever had said “the only good decision is an informed decision” with my 20+ years of hind sight I would not settle on a decision until I had been to a cancer center and had every tidbit of information about my diagnosis. Don’t decide until YOU are comfortable with the decision.
Do you live near a large cancer center?

@auntieoakley I’m sorry you had to fight this at such a young age. Yes, I do live near several medical research/teaching hospitals, and have consulted an excellent surgeon there. Standard protocol still is lump removal (for me, though, it escalates to partial mastectomy, because my tiny DCIS is right by the nipple!), citing that there is no long term data on active surveillance. I understand all that, and know surgery may be in my future, but I want to see if waiting is a reasonable choice for me at this time. I’m meeting with a medical oncologist there next month.

Hi, orienteer, I had a similar experience to yours. I am post menopausal (70) and noticed a very slight nipple discharge in Jan 2025. Mammogram and ultrasound were negative (no micro calcifications) so I had an MRI which showed non mass enhancement. A biopsy was performed and showed DCIS, grade 2, about 4 cm behind the nipple and a simple lumpectomy was recommended. By the time that I saw the surgeon to discuss my options, they had decided that the DCIS went all the way to my nipple and that I needed it removed also. I was flabbergasted, and the surgeon (who had just finished their residency) started talking about a mastectomy and/or a double mastectomy! I then saw a 2nd surgeon, who recommended the partial mastectomy and finally a 3rd, who offered to do a lumpectomy and biopsy the other suspicious area right behind my nipple. Since he was by far the most experienced, and it was April by this time, I chose to have him do the surgery. All 3 surgeons were with the same oncology group at a large teaching hospital with an excellent reputation. Finally, 2 days before my scheduled surgery, I got a 4th opinion from an surgical oncologist at Johns Hopkins. They did not trust MRI readings and said that they would perform a lumpectomy and take as much tissue as possible from behind the nipple as if they were performing a nipple sparing mastectomy. When I relayed this to my surgeon, he said that he had offered this, too! (He hadn’t!) So that is the lumpectomy that was performed, it went well, my margins were clear, the total size was 8 mm, DCIS, ER+PR+ HER2- , partially upgraded to high grade. Unfortunately, Johns Hopkins pathology lab found a small (4 mm) foci of invasive IDC in the slides from my biopsy which wasn’t known until after my lumpectomy. They didn’t see any invasive component in the lumpectomy tissue so it was all removed by the biopsy. It was very low grade with a Ki-67 of 2%. I didn’t have a lymph node biopsy since they didn’t know about the invasive component at the time of my surgery. I then elected to have radiation via brachytherapy, which wasn’t bad at all. I didn’t want to take an aromatase inhibitor, but I have been taking anastrozole for 3 mos with almost no side effects. My chance of recurrence is low, 5-6% without the AI and 2-3% with it, but I figured why not at least try the anastrozole? It also lessens the chance of cancer in the other breast as well as ovarian and other cancers. If I have adverse side effects I can stop taking it. So, please heed the advice of getting an outside second opinion. Get as much information as you can, you have the time, before you make a decision. About 20-30% of DCIS has an invasive component when it’s totally removed so that’s something else to think about. Before my lumpectomy, my surgeon suggested that I take an AI and watch/wait but my oncologist was not happy with that idea. I know how you feel, it’s seems like a drastic surgery for something relatively minor, do what you feel comfortable with, every case is different. I’m sending you my best wishes and hopes for the best outcome!