Extensive DCIS not found on MRI

HH25

Hey, Everyone!

I was diagnosed with two spots of grade 2 DCIS in my left breast last month. I had an MRI two weeks before my lumpectomy and a mammogram with needle loc the morning of my lumpectomy. The MRI and mammogram showed only those two spots. The pathology, however showed extensive DCIS throughout my left breast but clear lymph nodes. My surgeon has recommended bilateral skin saving total mastectomy with immediate reconstruction. Anyone with experience or guidance and also, should I anticipate a battle with insurance?

Thank you and love to all ❤️

HopeWins

first - so sorry you're hear, but how do they know its extensive? Visual observation/masses larger than expected or no clean margins or something else?

I had about 1.5cm DCIS, grade 2, lots of other atypia, a little bit of family history and I had bilateral nipple sparing mastectomy, immediate recon - DIEP. I had no problem with my insurance and the BS did not recommend bmx for me. She felt that was overkill. Just sharing because I was afraid that might have an impact with insurance but the nurse navigator told me it was my decision and once you havd a bc diagnosis, insurance has to cover whatever (conventional) treatment you choose. I'm sure there are some insurance companies that give folks a hard time but I had no issues. Wishing you the very best!

HH25

HopeWins, thank you for your reply! The two sites were large to begin with and my margins weren't clear. When I had my core biopsy late December, I had gotten a hematoma so during the lumpectomy, the surgeon removed that tissue too and sent it off and that tissue had DCIS as well. My mother had breast cancer but thankfully I'm BRCA negative. Thank you for sharing your experience with me.

LiveLoveLaugh2020

HH25,

Sorry for your diagnosis. I decided on Bil NSM and have had no problems with insurance. The only thing that stinks is that wonderful deductible. After that everything was covered.

It was/is not an easy journey and there will be many bumps in the road. But I'm glad with the decision I have made.

Wishing you the best.

MinusTwo

HH25 - I chose bilateral mastectomy for DCIS in the left breast. During surgery they discovered DCIS in the "good" breast too even though it didn't show up on ULS or MRI, so I made the right choice. Things don't always show up on imaging.

Lefty_Lucy

Hi HH25, I didn't have the same situation as far as how my DCIS was found--docs knew it was very extensive from the first mammogram on. But with you on very extensive. Edge to edge, chest wall all the way up through the nipple, including ducts all the way to the surface. Touching the subcutaneous fat on the medial side of the breast.

I've had my L mastectomy so far (skin sparing to the extent that was possible), anticipating doing the right with reconstruction in the coming weeks/months. No battles with insurance so far, but I'm certainly not through the process yet.

Wishing you the best.

Rrobin0200

I had DCIS as well and decided upon a BMX with immediate reconstruction, even though my surgeons both told me that I only needed a lumpectomy. I had absolutely no trouble with my insurance.