Follow Up Care Questions

My path to a diagnosis was somewhat unusual.  I had an excisional biopsy of a palpable, benign papilloma.  For some unknown reason, my surgeon elected to excise additional tissue in an adjacent area during the same surgery.  Due to an odd set of circumstances, I found out more than a month after the surgery, via a phone message from my surgeon's partner, that they found DCIS in the second excision.  Basically, I had a lumpectomy without knowing I it was a lumpectomy.

While most women with a DCIS diagnosis have a bit of time to mull over treatment options, I more or less skipped the major decision.  I had a lumpectomy by default.  I was not offered an MRI to determine if there were other areas of concern in either breast.  I was told that a mastectomy at that point was overkill and I could either have whole breast radiation and/or tamoxifen or simply choose to have no further treatment.  Because my DCIS was grade 3 with smaller margins than I was comfortable with, I decided to go with radiation and tamoxifen.  I finished the radiation about a month ago and have been on tamoxifen since then.

Because of the odd circumstances I mentioned, I was able to have a long conversation with the head of the imaging department at the breast care clinic.  He considers it to be "smart luck" (doesn't care for the term "dumb luck") that my DCIS was found.  He showed me my mammogram slides.  Not only is the DCIS not visible, the papilloma is completely obscured by dense breast tissue.  He and my surgeon both told me most papillomas are not palpable.  I found mine because it was near the surface.  Had it been deeper, I would not have felt it and would have gone on my merry way, secure in the knowledge that my annual mammogram was clear.  Since I could feel it, I had an ultrasound, followed by a needle biopsy which confirmed the papilloma diagnosis.  I had thought papillomas were always removed due to the possibility of having an abnormality next to it.  The radiologist told me that was not always the case.  He wasn't sure why my surgeon wanted to remove mine.  Furthermore, he was baffled about why she did the second excision, in which the DCIS was found.  There was no indication in her notes and following the surgery, she told my husband that she neither saw nor felt anything unusual and fully expected the biopsy to be negative.  So, I was lucky I found the papilloma, lucky it was removed, and lucky a second excision was done.  If there is a next time, I don't want to rely on such extreme luck to find it before it has advanced to a higher stage.  I feel that I have to be extra vigilant, but I don't know what that means.

I'm afraid I missed a critical step in this process by not having an MRI when I was diagnosed.  Also, my RO (who is doing my follow up care) doesn't believe in doing MRIs for surveillance regardless of how dense my breast tissue is and doesn't even want to do another mammogram until August.  By that time, it will have been a year since my last mammogram.  I've been told multiple times by various medical professionals that I would be closely monitored for at least 5 years.  Yet my RO is proposing nothing more than is recommended for any woman my age (early 50's) - annual clinical exams and annual mammograms offset by 6 months.

So, at the end of a long and rambling post, I have a few questions:

1) Should I insist on an MRI now, since I've never had one?

2) Based on the fact that my breast tissue is dense enough that even a palpable papilloma was not seen on my mammogram, should I insist on annual MRIs?

3) What is the standard surveillance for someone that has had a DCIS diagnosis (are offset annual clinical exams and mammograms enough)?