Looking for those with similar DCIS diagnosis

Not all DCIS presents with calcifications which is what is most easily seen on mammography. I had a mammogram in August 08- everything was fine and then in Sept felt something - not even to the touch, I could just lie still in bed and one breast felt different than the other!!! I went to my primary care doctor and he could feel a lump. An enlarged duct showed up on ultra sound - a breast surgeon felt nothing, it was not until a second ultrasound, when the duct was clogged that the breast surgeon recommended a needle/core biopsy exactly at the site my pc had id'ed. So yes, DCIS can present as a lump. In fact, I believe it is the higher grades that are more likely to do so. Other types are more diffuse, the cancer cells are spread out with gaps over a wider area.   I had an MRI AFTER my excisional biopsy and will be getting another - a year later - as a second monitoring method, in addition to an annual mammogram (6 months apart).I would assume you are not being monitored by a medical oncologist because you aren't on tamoxifen. I am on tamoxifen and see a medical oncologist and the radiology oncologist, who continues to monitor me, ordered the mri however, I am not being followed by the breast surgeon. Again, I am just reaching my first anniversary. I believe the visits will space out as time goes on, I would ask your breast surgeon about an MRI.

good luck

Julie E

Nipple discharge led to finding mine with an excisional biopsy -- after a negative mammogram, inconclusive ultrasound, and negative core biopsy.  Although mammograms are the most common first sign of DCIS, the symptom of discharge is not unusual.  Practically all women under 40 diagnosed with DCIS found it because of a lump or symptoms (along with some of us over 40).

My DCIS was only discovered during my annual mammogram. I did not have a lump. My diagnosis is similar to yours. DCIS, grade 3, comedo necrosis, ER/PR negative. However, I chose a different route and had a mastectomy.

I'm only 6 months post op and I have my first post op appointment next week so I'll know more at that time regarding follow up etc, My doctor insists on mammos even after mastectomy . . . I know that is very unusual but I'm okay with it.

Diapermaker:

    You most certainly can have your slides sent to another pathologist for a second opinion. They belong to you.  I had my slides sent to two other hospitals-- Johns Hopkins and Sloan Kettering-- just for peace of mind (georgetown did my surgery).  My insurance covered one, but the other I paid out of pocket (about $270).

You just call the pathology dept. where you had the biopsy done and they'll tell you how to do it (paperwork and fees)-- then they send out the slides-- the other lab will return the slides within 30 days (but always double check that they were sent back).  All 3 reports were the same, in my case.  I also made an appointment for a second opinion with a  medical oncologist to review treatment options.-- Julie

Hi Again--  I used Sloan Kettering because everyone says they are the best, but there is a person on this board who insists on Michael Lagios because he is THE expert on DCIS-- he's in California-- he has a website www.breastcancerconsultdr.com.   I think any of these, or MD Anderson, will be useful.  I then brought the second opinion to my BS and to my oncologist-- just to discuss the results.  --Julie

Actually, my first bc surgeon said that she removed a small lump where the dcis was found. Who knows? How do you know what are lumps and cysts? I have so many lumps. The doc said that they are probably beneign.

I read that dcis doesn't happen over night. Sometimes they don't show up on mammo's ... epecially very early dcis. I had califications only in one area that showed up on a mammo, but in the final dx high grade dcis cells were found throughout the tissue removed...which did not show up on the mammogram or mri.

Last December was my first year cancer free. My bc surgeon recommended that I stay on the 6 month screening program for 2 years. One mri and a mammogram per year. I do think after the second year being cancer free, she said that it would be ok to go back to the once a year mammogram screening.