DCIS - 2011 Mastectomy/Reconstruction 2018 Recurrence

HMB

Hi everyone, I am new to the community and hope I am posting within the guidelines of the organization. Please let me know if I should post elsewhere. I was diagnosed with DCIS in 2011 (intermediate grade DCIS with comedo-necrosis and calcs in LB and RB calls in RB with morphology suggested). It didn't take long for me to decide to have a double mastectomy and reconstruction. My reasons were that the calcifications spread widely through my left breast and because I'm a kidney transplant survivor on immunosuppressant medications for life, I thought it'd be safer for me to have both breasts removed and reconstructed than to risk lumpectomy and have recurring DCIS down the road. I was concerned that if I ever had to have radiation or chemo, I might get so sick that I'd lose my kidney. Mastectomy was a tough decision, but I felt that was the wisest thing to do and my doctors agreed.

After I recovered, I was told I didn't need to have mammos or ultrasounds any more (since there's no tissue in my breasts), only self-exams or annual physicals with my primary doctor. I thought at the time that was strange because what if it came back and I found out too late - after it had turned into stage 1 cancer? So all these years, I've just been feeling for any lumps or changes and having my primary doctor do the same at my annual physicals.

Earlier this year, I talked to my transplant doctor at my annual with her and said it just seemed strange that there's no way to mammogram or ultrasound reliably for recurring DCIS, but that I felt I should at least check in with a breast doctor. She agreed, so I searched around and found a good one through the medical network. I went to her in August and she checked my breasts by feel to see if she could find anything (which she didn't), and sent me on my way to come back again next year.

Last month, my left breast started feeling uncomfortable. I noticed by stretching during exercise that I didn't have as much range of motion. It felt like I was pulling/ripping my L breast when I would stretch and my bra started feeling uncomfortable. I also started feeling sensation in my left nipple which is in itself strange because after mastectomy I couldn't feel much at all in my breasts. So I called my breast doctor back and said I was concerned that there was something wrong. I met with her nurse practitioner who ultrasounded me (no results), she sent me to the breast center as their ultrasound is much stronger (no results), and then decided to send me to MRI. That's when they discovered that DCIS was in my LB nipple (a white glow).

I had the lumpectomy two weeks ago to excise the 3mm mass. After the surgery, my breast surgeon said she scraped my L nipple as much as she could, removing the lump, and sent the two samples off to have them biopsied. Turned out to be DCIS, micropapillar type, high nuclear grade, with luminal necrosis and microcalcifications. Since the DCIS was not invasive, she didn't seem worried about it as margins were clear, and there was no suggestion to check with an oncologist.

I didn't feel comfortable letting it go at that because my DCIS was supposedly gone after my 2011 surgery and now it's back. So I started researching a little online on my own and realized that DCIS has a probability of returning either as DCIS or IBC. I met with her Thursday to have stitches removed and I had several questions to ask, but mainly what if it comes back invasive next time. She assured me the margins are clear around where she removed the lump, which is admittedly very tiny. I told her how concerned I am and that I've already set up an appointment with an oncologist that specializes in DCIS and wish to hear his perspective. After discussing things with me, and thinking about it, and talking to her colleagues, she agreed that's a good idea.

Anyway, I'll let you know what happens after I meet with the oncologist. This guy sees only DCIS patients, so this should be interesting. I'm okay with considering radiology or oncologist if it's absolutely necessary. My breast doctor and I even discussed removing the L nipple entirely and then replacing my implant. So we'll see what happens. Thank you for listening!

Infobabe

Sounds like all the breast tissue was not removed with your first surgery. How else did DCIS return if there were no ducts. Many call themselves breast surgeons but are they board certified? I board certified breast surgeon is trained to remove ALL breast tissue.

Moderators

HMB, we are sorry for all you are going through AGAIN. We're also pleased to hear that you are going to a DCIS specialist. We are eager to hear what they say.

Here are a few pages that could have some helpful information:

Treatment for DCIS

DCIS and margins

Radiation, Tamoxifen After DCIS Surgery Reduces Recurrence Risk

Hang in there and please keep us posted!
Your Mods