The limits of technology: multifocal DCIS undetected by MRI

DH and I retired about a year ago and are temporarily living overseas and traveling. I have diligently undergone regular breast exams and mammography throughout my life (I have very dense breast tissue and have had numerous benign lumps, maternal grandmother had breast cancer late in life, and one aunt had ovarian cancer).

In April of last year at age 50 I had spontaneous bleeding from left nipple. Family doctor referred me to a local hospital for mammogram and ultrasound, both of which were clear. Testing of the bloody nipple discharge came back normal. Doctor suggested the possibility that I might have an intraductal papilloma and recommended I see my breast doctor next time I went back to the US.

In October my left breast suddenly became extremely swollen, red, and painful. Went to the emergency room and following ultrasound was diagnosed with mastitis, cause unknown (apparently it's most commonly found in lactating moms -- I have no children and have never breast-fed). Two weeks of hard-core antibiotics seemed to clear it up.

In December upon returning to DC I had another mammogram and ultrasound. The technicians and doctors struggled to find anything at all, but kept looking due to the fact that I was continuing to have spontaneous bleeding from my left nipple. (In fact they told me that if it weren't for the bleeding they probably would not have identified anything.). They finally detected two tiny "areas of concern" (microcalcifications around 2mm) in left breast. Subsequent core and needle biopsies revealed one was atypical lobular hyperplasia and one was DCIS. ER+, PR+.

Scheduled lumpectomy for January. Surprisingly, pre-surgical MRI in January was completely clear.(?!) Breast surgeon hypothesized that maybe the biopsies themselves removed all the cancerous cells. She said assuming margins were clear on lumpectomy pathology I probably wouldn't even need radiation as the area of concern was so small. I was thrilled. We also agreed that I am not a candidate for tamoxifen, as I have a history of deep vein thrombosis and pulmonary emboli due to a rare genetic mutation that predisposes me to blood clots. (I am also premenopausal.)

But then: Pathology results from January lumpectomy of approx 2cm of tissue revealed DCIS, low to intermediate grade, on 19 of 20 slides. Margins were clear but too close at .2mm. How could this be if MRI results were clear? "Currently available diagnostic technologies cannot always pick up DCIS." Recommended second excision, Oncotype testing, and genetic testing, which I proceeded to have.

Re-excision in January of an additional approx 2cm of tissue (so tissue of approx. 4cm in diameter has now been removed from left breast) revealed more DCIS on half the slides, and positive margins. Surgeon recommended mastectomy but said there was no particular urgency and that I could wait to have it in a few months upon next return back to the US. I asked if another excision was possible and she said no, because in her experience the chances of getting a clear margin on a third excision are less than 50%, and that it usually ends up requiring a mastectomy anyway, plus the breast would have so much tissue missing by that point that I would probably want to consider reconstruction.

She also explained that the DCIS is located directly behind the nipple, so a nipple-sparing mastectomy would not be possible. And she said that she would strongly recommend a sentinel node biopsy as well. (This seems like it might be overkill to me -- since I don't even have invasive cancer as far as we know at this point I would rather avoid it if I can due to the increased risk of lymphedema and longer healing/recovery time, but she said there is no way to locate the sentinel node post-mastectomy, so it has to be done then. I asked her if it is possible to map and mark the sentinel node for possible removal later if the mastectomy pathology shows invasive breast cancer -- as I had read about on this board -- and she said no because the radioactive isotopes they use don't last long enough.)

While in the US, I had a follow-up consultation with a radiation oncologist, who concurred with the need for either a mastectomy or a third excision, citing a 2016 study showing that positive margins are associated with an increased risk of breast cancer recurrence, which risk cannot be mitigated by radiation.

I also had a consultation with a surgeon who specializes in breast reconstruction and discussed all the various options, in the event that I did decide to proceed with mastectomy. This is also when I started reading this forum extensively.

My DCIS Oncotype score came back at 46, indicating a 13% risk of tumor returning as either DCIS or invasive cancer in same breast within 10 years if treated only with breast-conserving surgery (risk of invasive local recurrence = 9%). However, this seems unreliable because it is supposedly based on the size of tumor from my first excision, but it is clear now that my DCIS is multifocal, so the "tumor size" is unknown since my margins weren't clear. The DCIS is in more than one quadrant of my breast tissue. Plus, I don't think 9% and 13% are particularly comforting numbers.

Good news is that I was tested for 80 different genetic mutations which are known to be associated with various sorts of cancers, and all of them came back negative. (Of course I could still have some other genetic mutation associated with cancer which they just haven't discovered yet...so that's not huge consolation either.)

I just received a second opinion from Dr. Lagios after reading about him on this board (thank you). It confirms DCIS scattered throughout the breast tissue, nuclear grade I-II, without necrosis, no evidence of microinvasion. (The only difference was that he interpreted two slides as having atypical micropapilloma rather than DCIS.). It also confirms DCIS is present on two of the margins from the second excision. On the Van Nuys scale, he said this is grade=1 (NG I-II without necrosis), size=2 (15-40 mm), margin status=3 (<1 mm in final excision) and age=2 (40-60 years), total score=8 out of 12, but notes that this is "without a 3 mm minimal margin." Further: "The outcome of VNPI 8 without minimal 3 mm margins is poor, with local recurrence rates even with irradiation of 40% at 12 years." He finds that residual disease is likely, but "an MRI may clarify the extent of the residual." (I don't think so, since the MRI never showed any DCIS to begin with, so why would it show any now that I had it excised twice?) He also says "It is still possible that only scant DCIS remains and is amenable to re-excision potentially reducing the final VNPI score to 6 or 7."

I am having a phone consultation with Dr. Lagios on Wednesday and will see what his recommendation is. Right now I am leaning toward returning to the US in April for a double mastectomy & SNB with immediate, direct-to-implant reconstruction (no expanders), skin-sparing on left and nipple-sparing and skin-sparing on right, probably with silicone implants but I am still trying to figure out what kind (posted a separate question to whippetmom on the implant thread). This will probably mean I will end up a bit smaller than I am now due to losing nipple, areola, and some skin, but I'm OK with that. I'm inclined to get the "Vinny" 3-D nipple tattoos rather than nipple reconstruction. Because we are living overseas and traveling a great deal, I think I want to try to get this over with and move on -- watchful waiting does not lend itself to quality of life, at least for me. DH is extremely supportive of whatever I decide and has been fantastic. But if you told me a year ago that I'd ever consider getting silicone implants and tattoos, I would have thought you were crazy!

I mainly wanted to post this here because like many on this board, I am frustrated that (1) there isn't a better way yet of determining whose DCIS will become invasive and whose won't, so I feel like many of us may end up having mastectomies that we will find out later weren't necessary, and (2) I have read that many people think that DCIS is being over-diagnosed and treated, and I'm sure that's true, but it is also true that many of us have DCIS that failed to be detected by initial mammogram, ultrasound, and MRI! If I hadn't been bleeding, I'm confident that I would have no idea that I currently have DCIS. Technology may be better than it's ever been, but it's still limited. People talk about false positives, but there are also false negatives! It's so important to do those self-exams and listen to your body.

Thank you to everyone on this board who has been so open about sharing your stories. I have learned a great deal from you already. This is an amazing resource, and I'm open to any thoughts, suggestions, or reactions you might have, particularly heading into my conversation with Dr. Lagios.