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Topic: 18 Month Mammo abnormal. What to do??

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jun 18, 2020 05:49PM

QueenB44 wrote:


I was hoping that I wouldn't have to be on here again. I was diagnosed Dec 2018 with DCIS stage 0 with recommended radiation or hormone therapy. I chose the lumpectomy but not rads or hormone therapy. I just left my follow up mammo with more calcifications in the same breast. Not sure what route to take or what the standards are. Radiologist recommended another biopsy and I have a call out to my Surgeon. I'm just feeling that its pretty quick to get abnormalities once again and I should just bypass the biopsy and get a Mastectomy with fat recon - (I could lose the tummy). I have no idea what protocol is, what insurance covers (we have really good insurance). Is it common to just remove the problem and move on? Any insight would be helpful.

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Jun 18, 2020 08:45PM MinusTwo wrote:

Sorry about the possible new issues. Protocol pretty much calls for radiation if you only have a lumpectomy. And if you are hormone positive, hormone therapy is recommended. It sounds like you refused both.

No - it's pretty hard to just "remove the problem" and move on. There are usually micro dots that are not seen during surgery (particularly lumpectomy but even with a bilateral mastectomy). Those are likely already in your system or your blood stream or lymph nodes, or.....

I had DCIS and a double mastectomy. Since I was hormone negative, I didn't have to discuss that issue and rads were not recommended once the breasts were gone. The surgeon got beautifully clear/clean margins - so off I went - fat, dumb & happy, as we used to say.

At my two year check up, there was a lump by my collar bone. All the docs were horrified that it turned out to be a local recurrence and NOW it was no longer DCIS but IDC and HER2+. So now neoadjuvant chemo was urgent, and surgery, and more chemo, and rads and herceptin for the rest of a year.

I'm hoping that your biopsy doesn't turn up something nasty, but it's better to know what you're dealing with before starting treatment or surgery. Once things are cut out, some tests can no longer be run.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jun 18, 2020 09:29PM QueenB44 wrote:

Thank you, I've understood the radiation and hormone replacement protocol from the beginning. I chose not to go that route due to my DCIS being stage zero. Not sure if I regret that decision or not as both treatments also have their side effects. What I'm wondering is whether or not a biopsy in necessary or to just do the dbl mastectomy. I figured that once they are out they can analyze everything then and I'd be done with it. It sounds like that wasn't the case for you though? I really don't know what the standard is, I've read that if you have DCIS twice its to remove them.

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Jun 18, 2020 11:32PM - edited Jun 18, 2020 11:32PM by blah333

DCIS is always stage 0...They recommend radiation with lumpectomy because you still have breast tissue/ducts after the initial DCIS. The radiation helps kill all the cells and prevent them from coming back. You didn't do that so likely it came back (calcifications are associated with DCIS). I don't think this is "too soon" to have it happen again... 2 years is ample time....

When DCIS returns a 2nd time, the protocol is usually mastectomy because you are not supposed to radiate the same area twice. Because you did not get radiation the first time, it is possible they can remove the area with another lumpectomy, then do radiation. It depends on how extensive/large it is. Did you ever get an MRI to see?

Your surgeon is right that biopsy is the next step. After that I would imagine they'd do some further imaging, then surgery.

Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/1/2017 Mastectomy: Left, Right

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