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Invasive gone, DCIS remains after re-excision. MRI wait time?

Posted by billiemoore @billiemoore, Sep 24 9:47am

I had stage 2 IDC with 1 lymph node involvement. After 1st lumpectomy, path came back invasive gone but DCIS in margins. After re-excision, path came back with DCIS remaining in margins. My initial surgeon recommended mastectomy. Since that is my last resort, asked about MRI to see extent and make sure I’m making the right decision.

I got everything else besides MRI previously bc I have terrible claustrophobia and we were chasing IDC spread so had CT, petscan, etc.

He recommended waiting 90 days to avoid false positives from lumpectomy surgeries. I have been waiting and in meantime, went to U of M for 2nd opinion. They reread slides and got more detail on margins-smaller areas than before by MidMich. That new surgeon wants me to get MRI sooner bc we postponed radiation on lymph node area and she wants to see extent before recommending 2nd re-excision vs mastectomy. Concerned about false positives—about 2 months out from last surgery.

Anyone else get MRI post surgery and how long did they recommend you wait?

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worried1111 | @worried1111 | Sep 25 8:27am

I had a mastectomy. Two weeks later a lump on chest wall. Confirmed cancer. Chemo to shrink. Then a lumpectomy. The MRI said it was gone. They went in again based on MRI. Another 3.5 cm of cancer. Now 3 bad margins. The surgeon rationalized it could be “false positive margins” and go to radiation to clean up any remaining cancer. You would need to put a gun to my head to live with that. Thank God I pushed them ( two tumor boards later). Final surgery took out another 1.2 cm with finally clear margins. The motto of the story: MRI’s don’t necessarily pick up cancer. The only true way is a pathology report from surgery. Otherwise it is just guessing. Everyone in my case was guessing and they were wrong!

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worried1111 | @worried1111 | Sep 25 8:40am
In reply to @worried1111 "I had a mastectomy. Two weeks later a lump on chest wall. Confirmed cancer. Chemo to..." + (show)
Profile picture for worried1111 @worried1111

I had a mastectomy. Two weeks later a lump on chest wall. Confirmed cancer. Chemo to shrink. Then a lumpectomy. The MRI said it was gone. They went in again based on MRI. Another 3.5 cm of cancer. Now 3 bad margins. The surgeon rationalized it could be “false positive margins” and go to radiation to clean up any remaining cancer. You would need to put a gun to my head to live with that. Thank God I pushed them ( two tumor boards later). Final surgery took out another 1.2 cm with finally clear margins. The motto of the story: MRI’s don’t necessarily pick up cancer. The only true way is a pathology report from surgery. Otherwise it is just guessing. Everyone in my case was guessing and they were wrong!

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@worried1111 Moreover, the longer you wait the worse the outcomes. 8 weeks is already a long time. I had to wait 10 weeks for surgery and then I had to heal from the surgery before radiation.

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billiemoore | @billiemoore | Oct 16 1:05pm

Looking for those that had re-excision --invasive now gone and left with DCIS in margins but opted out of mastectomy and treated with radiation and tamoxifen. Vigilant survellience

I'm considering taking the gamble to spare my breast and would instead move to radiation and stay on Temoxifen (current for last 2 months). If I had a reoccurence down the road, then would last resort full removal of breast.

Please share if you have done active surveillance+ radiation+endocrontherapy successfully.

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jennygarre | @jennygarre | Oct 26 12:39pm
In reply to @billiemoore "Looking for those that had re-excision --invasive now gone and left with DCIS in margins but..." + (show)
Profile picture for billiemoore @billiemoore

Looking for those that had re-excision --invasive now gone and left with DCIS in margins but opted out of mastectomy and treated with radiation and tamoxifen. Vigilant survellience

I'm considering taking the gamble to spare my breast and would instead move to radiation and stay on Temoxifen (current for last 2 months). If I had a reoccurence down the road, then would last resort full removal of breast.

Please share if you have done active surveillance+ radiation+endocrontherapy successfully.

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I have invasive Ductal Carcinoma Stage 2 (er3+pr3+ Her-2 1+fish). 1 1/2 years ago I was diagnosed with this cancer. I was told Chemo would not help my cancer. They immediately put me on Hormone therapy. First was Letrozole and my tumor started shrinking, though I had horrible side effects on my face (Swelling and horrible rash on my face for 2-3 weeks. It was so bad my eyes would be swollen shut) Then they put me on Anastrozole, so much better, no side effects and my tumor went from golf size to tip of a pencil size. I had surgery on Oct. 10, 2025. all went well until my follow up on Oct. 24. Apparently the Dr. didn't get all the cancer from breast area, 1cm was still touching ink area. Still waiting to hear from Dr. of next step. Yes i will be doing radiation

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