Calcification = DCIS? Also, monitoring/watch & wait

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kittenknit
kittenknit Member Posts: 9

My screening mammogram last year showed 2mm calcifications, in June, 4mm. I had a biopsy last month that showed 5mm, with none seen in the post-biopsy mammogram. I was diagnosed with DCIS grade 2, saw a surgeon and was waiting until today for a second opinion discuss monitoring without surgery.

Today's mammogram showed one calcification. Not 1mm, just one.
I asked to have the biopsy tested for hormone receptor status, which apparently they don't do routinely here (Canada? Toronto? This hospital?).

Meanwhile, I've decided to decline surgery for now and go for another mammogram in 6 months (or maybe when the snow clears). I have moderate myalgic encephalomyelitis (ME/CFS), meaning I spend about 3/4 of my day in bed; for example, swimming for 20 minutes Friday left me unable to do anything Sunday, didn't even sit up until after 5pm, though usually I'm just more tired on the second day after swimming. (ETA: couldn't do anything today, the day after my 4 hour appointment.) I've had two normal nights' sleep in the past week, which is typical. Anaesthesia and surgery would likely have me down until spring. My calculus is just different than it was before I became ill. I've also seen on this board that surgery doesn't necessarily reduce anxiety about recurrence or spread.

I didn't understand whether the answer then to 'Do I still have DCIS?' is 'yes', 'maybe', 'probably not' or could only ever be 'there's no way to know without surgery'. I asked the surgeon and it seemed like she said at least a couple of those.
• Can anyone here tell me?

I see a lot of discussion here about lumpectomy alone vs lumpectomy and radiation vs mastectomy.
• Anyone else just monitoring?

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2017

    The answer to the question "Do I still have DCIS" is "there's no way to know without surgery".

    I know that's not the answer you want, but that absolutely is the correct and only answer. No method of screening provides 100% certainty. And unfortunately it's not particularly unusual for areas of DCIS to be larger than what appears on the imaging... so even without any calcifications present, it's still possible that there could be more DCIS in your breast, just DCIS that hasn't yet reached the point of being visible through calcifications. My mammogram showed two large areas of calcifications, and both turned out to be DCIS, but the total area of DCIS found in my breast ended up being about double what the mammogram showed. In my case, I had an MRI that turned out to be much more accurate at identifying the extent of my DCIS, but MRIs are best at catching high grade DCIS vs. lower or intermediate grade.

    That's not to say that you have more DCIS than what appeared on your mammogram, but there is just no way to know.

    As for monitoring, there a few people who have done that, but most don't hang around here. Hopefully someone doing that will see your post and respond. There are a couple of facilities in the U.S. that have programs to monitor DCIS but none in Canada, to my knowlege. And I believe the U.S. facilities all involve the patient taking Tamoxifen in lieu of having surgery.

    Lastly, I am in Toronto and even 12 years ago, I received the ER and PR results on my DCIS after my biopsy - but then I had a surgical biopsy. It's possible that they are waiting for your surgical sample to provide that information; I know some facilities prefer to have the larger sample to do this testing.

    I understand your surgery concerns. One possibility might be a lumpectomy with a local or a twilight anesthetic - not usually done but a lumpectomy is a relatively simple/short/easy surgery so it's certainly possible and maybe something you can work out with your surgeon.

  • kittenknit
    kittenknit Member Posts: 9
    edited July 2017

    >There are a couple of facilities in the U.S. that have programs to monitor DCIS but none in Canada, to my knowledge.

    This surgeon is a PI for the Canadian arm of the LORIS trial, which isn't yet recruiting. That's why I went to see her. They'll be randomly assigning to monitoring or surgery.

    I had a mammotone biopsy. Maybe NYGH doesn't do hormone testing routinely on them, so if my doctor hasn't requested it since I asked him, Sunnybrook will now request the sample.

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