Triple negative DCIS

CandDsMom

Hi-

Was wondering if there was anyone out there with ER/PR (-) if not triple negative DCIS.  I was just diagnosed with multifocal (6 areas but only one 0.7cm the rest sub 0.5cm) triple negative DCIS 3/31/10 a few weeks after my 35th birthday now s/p B MX with free tram reconstruction 4/14/10 and am having a down day - just scared about the future mostly I guess.  I contacted Imerman Angels about a week ago to get set up with someone who has been through this - no response as yet so of course I start thinking maybe I am the only one (although I know this isn't rationally true).  Anyway, I'd love to hear from anyone else out there...

ebarry

CanDsMom, Ouch! You are doing the right thing. I was ER/PR positive, but heard its worse to be triple negative. You are fortunate to found this early. There are a lot of women on this forum who will be of encouragment to you. ((HUGS))

Mantra

I had DCIS that is ER/PR negative. I was told they don't test HER2 for DCIS. However, I guess they do things differently in various parts of the world.

cookiegal

I have always wondered about this for some reason. Hope you find some cohorts soon.

sunnyhou

Someone might come on here and correct me but I think if it is still DCIS then it does not matter what the hormone status is. I think if it had become invasive it could have changed to anything. I think the only reason it is important is if you were hormone positive and had a lumpectomy you would have been offered tamoxofin. I would not get too caught up in this. Most of the time they do not even run the hormone test on DCIS. I had to ask that it be done. I will try to find some info on it for you. I am young like you with two small kids so I understand the fear of the future. But know this. I was told less than 1% chance of recurrance after bilateral. Sometimes you see women on here who have reoccured but honestly .. those are prob the 1%.  I am not exactly where I need to be mentally with this but I am much better. If you need someone to talk to you can PM me or I can even give you my number. Blessings to you.. and congrats on finding it early!

Mantra

Sunny - very true that hormone status does not matter if your cancer is pure DCIS. Before my first surgery, I had done a ton of reading on my biopsy findings: grade 3, comedo necrosis etc. I was very disturbed to read that in all likelyhood, my post op pathology would come back as er/pr negative. My doctor kept saying to me "if it's pure DCIS, then it is irrelevent." No one thought my cancer would all be DCIS, but a lumpectomy and mastectomy proved it to be true. So even though my cancer was er/pr negative, it doesn't matter at this point. Had it been invasive (as was expected), I was told I would have had chemo.

LISAMG

Triple negative DCIS is far different from ER/PR ++ DCIS. Its almost always High grade and more aggressive with higher rate for recurrences. Never assume it doesnt matter... it certainly can be a big difference, just my 2 cents worth. It can also be a red flag for hereditary BRCA pre-disposition  and genetic counseling should be considered.

http://www.ncbi.nlm.nih.gov/pubmed/18187183

http://www.ncbi.nlm.nih.gov/pubmed/20427430

http://www.ncbi.nlm.nih.gov/pubmed/19282292

http://www.ncbi.nlm.nih.gov/pubmed/16941011

CandDsMom

Ok, so got freaked out and couldn't respond to the thread initially...:(

Anyway, saw my onc again yesterday - 2nd look from pathology dept came back + 2 additional pathologists at tumor board -> still DCIS (Mayo opinion just requested and pending to confirm).  Her 2 status ended up + although I was initially told negative.  From what I have read HER 2 + DCIS is more likely to go invasive but it seems to be present in the majority of DCIS anyway.  So who knows.  Mantra- interesting that you were also expected to have ER/PR (-) invasive disease - I was in the same boat so still am trying to wrap my head around the whole thing.  Just trying to be positive, I am actually starting to be cautiously optimistic after having been terrified the last 7 weeks. Sunny, ebarry, cookiegal thanks for the words of encouragement - I appreciate it!

Suzi_4

hi CandDsmom i have dcis pure with pr - an er - i had lumpectomy 4 weeks ago and my doctor sad to take tamoxifen but I'm not sore if will work for me with my pr,er neg how are you going did you had any problems?????

Suzi_4

hi Mantra did you had lumpectomy on your pure dcis

Suzi_4

hi Mantra did you had lumpectomy on your pure dcis

MTwoman

Suzi, this is an old thread and Mantra hasn't been here in years.