Opinions, Good and Bad, about DIEP Preventative in NOLA

MaryScout

Hello All,

I am new here, but not new to cancer -- cervical at age 33 and 3 melanomas since then (now 54). I have been diagnosed with ADH about a month ago, have heterogeneously dense breasts, and have had fibroadenomas removed. All the women on my mother's side (including my mother) have died young for reasons other than BC, so I don't know my history there.

Given my history with cancer, I just don't know if I can handle the heightened surveillance and chemopreventative drugs. So much stress. Plus, I travel a LOT for my job, out of the country.

I see a BS on Tuesday, but am seriously considering PBMX with deip flap in the desperate hope of being super proactive and having a chance to move on. I'm a college prof, and right now am at the start of summer with some time to recover.

My husband is from NOLA, so all of my inlaws are there. I'm writing with lots of questions about having a diep flap done down there at the Center for Restorative Breast. I'm sorry to have lots of questions, but here they are:

1. Has anyone on here had a PBMX diep flap with my profile? Regrets? Reliefs?

2. Most people sing the praises of the NOLA center, but I have seen some negative reviews. Thoughts?

3. When consulting with them, I asked if they biopsy all of the tissue removed, and they said yes. So let's say they find DCIS or anything more, what would be the follow-up? Would radiation/drugs be necessary anyway?

4. I've seen some comments here and there about poor record keeping at NOLA. Has anyone gone through this and needed their records and had trouble?

5. I've seen a post on here about a private Facebook group for the NOLA place, but I can't seem to find it. I do see the Center's page, but if there's another one that is private, can anyone point me toward that one?

So many questions. I am deeply appreciative of any thoughts.

Yours,

Mary

Moderators

Mary, until other members come along to post with some answers for you, here is a popular thread that has been inactive for a while now, but you may find interesting to read or post:

• NOLA in September?

Hope this helps!

The Mods

farmerlucy

Re: Point 3. I had a preventive mx and invasive was found. My BS had not done a sentinel node biopsy, so I waited for the area to heal and they did one three weeks later. There is some issue about whether a snb can even be done after a mx. I’ve only seen it a couple times on these boards. Angelina Jolie had her procedure done at The Pink Lotus Center. Her BS did the dye part of the biopsy but did not take the node. Apparently the dye stays in the node quite awhile, so if invasive had been found in Jolie’s case they could have gone back in and pulled the node. I’ve also heard of them putting a titanium marker by the node as well. Good luck with your surgery