DCIS-mastectomy. contralateral now precancerous

I'm only 3 months past dx so I am unable to respond other than to tell you that I'm sorry you're going through this - again.



Hopefully, soon, someone with more knowledge and experience than I will answer you.



Best of wishes

I am not sure of the answer but I will share my story. Multifocal DCIS in left breast  2 1/2 years ago. Radical mastactomy resulted, no additional treatment.

18 months later, 3 spots showed up in my MRI, and believe it or not, I had another MRI guided biopsy and the results were "inconclusive" I flipped out with stress and worry and had my second breast removed. The final result was precancerous.

I am very content to now be breast-free. No reconstruction.

Viktoria if you read my signature line you will see my DX.  We are similar in that we both have DCIS & ER, PR negative BC.  If you read up on Triple negative BC (although your Her2 was not tested) you will come to understand that it is more aggressive.  The possibility of recurrence is at it's highest rate the first 3 years with Triple neg. BC.  Then the rate drops.  This can be a local recurrence or a distant one.  If I remember in my reading it more likely to be distant, or a higher rate of it being distant.  I know the chances are less with DCIS than with IDC but still I think it is higher than with Hormone receptive DCIS.  Especially given that our Grade is 3 (faster growing cells).  I had a Lumpectomy with RADS & mine was not multifocal.  I don't know if the chances are higher with a multifocal DCIS or not.  Even though you don't know the Her2 status of your DCIS it might be helpful to read about Triple Negative BC as apposed to Hormone receptive BC.  Also the Grade 3 makes our chances of a recurrance higher also.  I hope this helps some ..... although it doesn't ease the mind any better.  For me it helps to know what I am dealing with.  I am sorry your having to revisit this again so soon!  Have you had surgery yet?  Please let us know how your doing!  Hopefully someone who has been where you are will come along soon to comment!

Viktoria1: there are some articles on this website under symptons and diagnosis. Then you scroll down on the left side to triple negative. You will find some good information there. So sorry your having to do this again. Keep us posted!

Viktoria, sorry to hear that the ALH was confirmed by the second pathology - but at least ALH is just a high risk condition and not anything more serious.  So you have time to decide what you want to do.

I'm sure that some women who've had NS mastectomies will come by and be able to answer your questions, but it's mostly DCIS women reading here. You'll find a lot more women who've had a NS MX and who can share their experiences if you post your question in the Reconstruction forum. 

Good luck with your decisions and with whatever you decide to do!

Hi Viktora1

You will see from my signature that I have had contralateral BC. First diagnosed IDC triple negative Sep 2009. I had neoadjuvant chemo (which didn't work!) and then lumpectomy Jan 2010 followed by rads. By summer 2011 I had pain / symptoms in my opposite breast. I had a mammo and ultrasound and nothing was found! But I knew there was something wrong. They did a biopsy of the area and I was found to have 4cm Grade 3 DCIS and triple negative again. I then had a bilateral mastectomy and I am just over a year out of that. I have a BRCA1 mutation of 'unknown significance' but I am taking part in BRCA studies in the UK. As you are Er-Pr- it is likely that you too are TN and as you have had contralateral BC it's likely that you have some form of BRCA mutation. There is a 25% chance of contralateral BC with BRCA mutations. Hope this helps! You are not alone. I am doing fine now - hopefully I have seen that last of BC but my surgical team are keeping a close eye on me.

Hi, I don't know your HER-2 status, but if it is negative like you e and p negatives, the first 3 years after treatment are the time of highest recurrence, in part because there is no hormonal treatment like tamoxifen for hormone positive breast cancers. The good news is that after 5 years the recurrence rate for tnbc is less than other breast cancer types.



There is a special populations thread called triple negative. There are some great people there who can tell you more if you are indeed triple negative.



I wish you the best in terms of treatment (I'm in the middle of mine).



Peggy

Hello, I had a bilateral NS mastectomy recently.  My breasts look pretty much like they did before the surgery, although somewhat bigger thanks to the implants.  Your breast/nipple  will look the same as it does now and the nipple may have temperature sensitivity.  In some cases, however, the nipple doesn't survive the surgery because too many blood vessels are cut.  This is a know complication you might want to discuss with your surgeon.