Tight Margins Post-Mastectomy!

Hi Josirus,

I'm in the same position you are right now. I'm 30 and had a bilateral mastectomy on April 28th, grade 3, with a margin of 1.8 mm. The only difference is that I haven't had the expanders put in yet. But I have an appointment with a radiation oncologist on Monday, and my surgeon is supposed to be setting me up with a medical oncologist as well, like Eldub recommended, but I don't know when that will be yet. I'll let you know on Monday what he says about radiation and hopefully that will help. Sorry I don't have anything more useful to tell you right now, but I'll definitely get back to you on Monday with what I find out.

Meghan

Josiru: the way it was explained to me is that as long as the cancer doesn't invade into the chest wall, the "deep" margin, the margin against the chest wall, is looked at differently than the other margins.  The muscle liining, the fascia, acts as a natural barrier.  As long as the surgeon takes the fascia, which is routine for mastectomies, they don't worry about a close deep margin like they do the other margins.  You can see Bessies excellent explanation on the other thread as to why they accept closer margins in a mastectomy as compared to a lumpectomy .  Given all that, I don't think your BS is trying to minimize your concerns in telling you not to worry.  However, it never hurts to get more opinions like you are planning to do

I think the grey area we live in and the anxiety over making the correct decisions, and in hoping we've correctly placed our trust in our docs is some of the scariest parts of this disease (and others, not just breast cancer).  Good luck to you and trust the voice deep down inside yourself.

josirus,



first off, I am so sorry that you are going thru this; i understand how frustrating/stressful these decisions can be.



i had a very similar experience to yours. i had extensive dcis in my r breast and had to have a mx, which then was told that in 3 separate places, i had margins at less than 1mm to the chest wall. and, in one of those margins, it was less than 1/10th of a mm. and, b/c my margins were scattered, i was told they couldn't do more surgery. i went for a second opinion and was told to have the rads. my surgeon did not take the fascia as i understand, but cut down to the fascia. i did have rads over my expanders and i can't say that if i had the chance to do it all again that i would choose the same route as i have now had my 7th surgery in 3 years and am hoping that this one will work. i had capsular contracture in my implalnt and just had it switched out for a silicone one. from all the reading that i have done on this website and the internet in general (and beesie is very informative and knowledgeable), i can't say that i know without a doubt that i needed the rads. most often, I have read that if the fascia is taken and even if it isn't, that b/c it is dcis, one would not need rads. however, i also know that the 2nd opinion that i received was top notch and i went with the info that i had at that time about my personal situation. my doctors thought for sure that it would come back and b/c of my age ( i was 31), i had more of a chance of it coming back i guess.



anyhow, as far as cosmetic results go, it will never be the same. my ps told me the other day (i just had surgery last week) that if i hadn't had rads then he would have been able to get almost 100% symmetry. the rads act like shrinkwrap around your expanders and make it difficult for a good cosmetic outcome. Not that my new foob looks bad, it looks great actually! I just need to work on realistic expectations. And, that's really been hard for me.



I wish you the best of luck on whichever path you choose.



Tara

Hello

I also sought a second oncology opinion as I was conerned about margins and I have been told the same: for DCIS the margins can be as small as one cell.

Good luck.

Hey  I have gotten emails that say there is push for insurance co. to make Mx day surgery.  There is bill before Congress to require atleast 2 days to be covered by insurance.  I have written my Congressman Joh Barrow, who is supporting requiring up to 2 days to be covered.  Pass this along

Thanks for that update, josirus! I've been wondering about this very thing as I'm scheduled for mastectomy next month and will have immediate reconstruction with TEs. I have been worrying about what happens if the pathology report from the Mx comes back with lack of clear margins -- so it helps a lot to see what your doctors are recommending.

Good luck to you, whatever you decide. Most of us would completely understand your desire to wipe out even a 15% chance of recurrence!

Another older thread that I'm bumping up because of relevance to current discussions about narrow margins after a mastectomy for DCIS.

This is just making me insane.  I had the same bad surprise last week, that my margins were <1mm.  I've talked to everyone--radiation onc, medical onc, my bs.  Everyone says that radiation is not indicated in  my case.  It's been before the tumor board:  no rads.  Now, I'm making an appt at another institution, but it works closely with the one I'm at, and here they all assure me I'll hear the same thing...Do I just keep going to doctors until someone says I need radiation?  I was feeling so good, and now I'm right back where I was pre-surgery:  no sleep, can't eat, etc.  I'm 48, so not as young as many of you.  Maybe that's why no rads? 

mom3band1g, yes I think that's possible although my guess is that it's probably not what happens in most cases when there is a recurrence after a mastectomy.  The issue is how long a DCIS cell can survive outside of the duct and whether the cell might convert to become invasive during that time. I'm sure it can happen but I'd think that it's pretty rare (and very unlucky).

What I think is more likely is that some tiny shreds of milk ducts might remain after a mastectomy and DCIS cells might continue to thrive in that environment.  Current understanding is that DCIS exists only in milk ducts and DCIS cancer cells cannot survive if they are moved outside of the duct.  The theory is that after a mastectomy, while there might be some breast tissue left, there aren't likely to be any milk ducts left.  So those who have close margins for DCIS after a mastectomy are thought to be at lower risk than those who have close margins for IDC after a mastectomy.  I'm sure that's true.  However, despite the theory that no milk ducts remain after a mastectomy, the fact is that 1% - 2% of women who have pure DCIS do have recurrences after a mastectomy - so obviously in some cases there is milk duct tissue left.  It's probably just microscopic scraps of milk ducts that are left against the chest wall, but I would guess that if there are any DCIS cells still in there, they can continue to grow.  And then, in that environment, these cells can evolve over time to become invasive.  

I just posted about a couple of areas where medical/scientific knowledge has been changing over the past few years.  This is another area.  When I was diagnosed 4 1/2 years ago, it was almost unheard of for someone who had a mastectomy for DCIS to get radiation.  I had a close margin - mine was by the skin - and radiation was not recommended.  There was lots of discussion about this topic on this board at that time and I don't recall a single case where someone was given radiation.  What we all heard from our surgeons, oncologists and radiation oncologists was very consistent.  These days, however, there has been new research that's shown that close margins after a mastectomy for DCIS can increase recurrence risk.  And now it's becoming much more common to see women having radiation after they've had a mastectomy for DCIS.  I think this is the result of this new information.

http://www.redjournal.org/article/S0360-3016(08)03116-7/abstract 

http://www.ncbi.nlm.nih.gov/pubmed/17481544?dopt=AbstractPlus

Bumping.