Had double mastectomy but not clear margins???

momof3kidz

I don't know if I am posting this under the correct topic, and if not, someone please let me know and I can move it. 

I had a double mastectomy and SNB on October 30, started immediate reconstruction with expanders.  At my first post op visit on Monday, I received the pathology report and learned that they didn't get clear margins.  I am going to type exactly (a small portion) of what it states, hoping some of you can help me make sense of it....

"Cauterized tumor is present less than 1mm from the red inked margin (anterior) in one of the tissue sections; thus, adjacent highly distorted epithelial cells truly at the margin are also considered to be tumor".

From the brief doctor's appt--I understood that this means the tumor was very close to my skin--and perhaps they didnt remove all of it??  She said anterior meant the top--closest to the skin.  Well, then she said I might need radiation.  She will present my case at a cancer conference and will have another pathologist read everything.  Then she (they) will decide upon the next step, if any.

So now, fast forward to today---I have had more time to think and absorb this info. 

The surgeon who performed my mastectomy was my 2nd (opinion) surgeon...both recommended double mastectomy.  So that is what I did.  I also had the SNB--which came out negative.  Before I had the mast. I thought and was told that if the nodes were positive then I would need chemo.  Other than that--I thought I would be home free.  The prospect of this "skin" thing never came into the conversation.  I never was told that the cancer was close to the skin and that they "might" not get it all, and that if they didn't that I might need radiation.  I seriously was never told this.  So, my questions...

Should I have even had a skin sparing mastectomy--if they knew it was so close to the skin?

This screws up my reconstruction plans....I already have expanders in place.  I had my 1st fill today and it will probably be my only fill.  My PS said he could "complete" me in 2 to 3 months, because I had large breasts and saggy skin to begin and it would be easy to work with...not alot of expanding!  SO....but today he said if I have to get radiation, then we would have to remove expander or implant and have to consider tissue reconstruction on that side.  I am devastated to say the least.

Alwayssearching

Momof 3,

I am so sorry to hear your story.  I had a similar thing happen after my bilateral mastectomy with tissue expanders that was NOT skin sparing.  My tumor was <1mm from chest wall.  On my path report in the gross description it stated that the tumor extends to the margin.  So I freaked.  I spoke with my plastic surgeon who said he would want to complete the exchange before radiation.  He made it sound very doable. 

As it turns out, my surgeon actually took chest muscle that biopsied "no carcinoma" and my onc later explained that did mean I had a clear margin.  But I think I can relate to how you are feeling.  I remember wondering if the images (MRI, mamo, and ultrasound) would have indicated the location of the tumor so I could have possibly made different decisions.  In your case it makes sense that if the tumor were that close to the skin that they would not have recommended a skin sparing mastectomy.  That seems like common sense.  Maybe the imaging technology is not 3D.  It shows where in 2 dimensions but not in depth???   When the surgeon was doing the surgery he/she should have called the pathologist and together made a decision to remove the skin? 

At any rate it is so frustrating to have a plan get thwarted by cancer and possible lack luster medical attention.  It is so hard to deal with a cancer diagnosis and make very hard decisions about how to treat it and do all of your research only to find out that you never really had all of the information in the first place...

I wish you the best of luck.  I hope the team of experts has a good solution for your sucky problem.  Please remember that the goal is to live cancer free for many many years.  This really is just another hurdle that you will clear with plently of room.

Beesie

momof3kidz,

Since you had DCIS, radiation should be considered optional afte a mastectomy, despite the close margins.  I had the same as you - a 1mm anterior margin after my mastectomy for DCIS.  Radiation was not recommended.  I was concerned and asked my surgeon why this was.  He explained that with any mastectomy, there will be a few cells of breast tissue left against the chest wall and the skin.  But DCIS doesn't exist within the open breast tissue - it's confined to the milk ducts.  And the likelihood that there will be any milk duct tissue remaining is extremely small.  So if someone has DCIS and the margins are close, radiation isn't necessary because the chances are so small that there could be any DCIS cancer cells left.  On the other hand, if someone has invasive cancer right at the margin, radiation will be necessary after a mastectomy with close margins because IDC cancer cells can live within that small amount of remaining breast tissue.

Now, there are differing opinions on this and there have been some women on this board who've had radiation after a mastectomy with close margins on DCIS.  But they are the exception.  I've read up on this as much as I could and most of the expert sources agree with my surgeon (who is the head of BC surgery at one the top cancer hospitals in the world).  And this issue has come up many times on this board, and most of the DCIS women who've had a similar situation to ours did not get radiation.  I remember one woman went for 4 opinions just to be sure and they all said that radiation wasn't necessary. 

Like you, I had an expander put in at the time of my mastectomy.  When I found out about the close margin, the one thing I decided to do was ask my PS to remove a bit more skin when I had my exchange surgery.  We knew from the pathology report that my close margin was right at the incision line, so she simply removed a little bit more skin when she took out the expander and put in the implant.  It probably wasn't necessary, but it gave me peace of mind.  You might want to see if something like that is a possibility for you. 

momof3kidz

Beesie--that's what I was wondering...if I had DCIS, how could there be any left next to the skin if DCIS is only in the ducts? 

Also,I think I read correct--but it sounds like only one margin was positive. 

Do you have any thing you can send me--that you read or researched?  Or can you dig up any other threads that you know of?  What could I type in to search for? 

Beesie

I bumped up two threads for you - one in the DCIS forum and one in the High Risk of Recurrence forum. 

The other thing to keep in mind is that since your close margin is near the skin, if you should have a recurrence, it won't hide for long.  It will be right there on top of your breast, pushed up by the implant.  That's one of the advantages of implant reconstruction - with the implant behind the chest muscle, it makes recurrences, either against the chest wall or the skin, easy to catch very quickly.

Route53

My wife had a bilateral total skin-sparing mastectomy and her margins were not perfectly clear either.

The surgery was 9/9 and part of our hold up in replacing the expanders with implants is that they need to schedule a small procedure at the time of the swap so that the breast surgeon can go back in and scrape a litle more tissue that is closer to the skin.

I know that there is a big oncology conference in San Antonio next month so maybe that is where your case might be presented.

Route53

http://route53.wordpress.com

ILvTink

I could have written the same post as you. My surgery was 10/13 for DCIS and had double mastectomy with SNB. My margins also were unclear. In fact 10 of 18 slides came back that way. My BS questioned these results as that is alot of unclear margins based on all of my mammograms and the MRI. At this point it was sent for a 2nd opinion. She had all the slides but not all of the films. My case was also presented to the Tumor Board. The Tumor Board did not agree with the pathology results and neither did the 2nd opinion. The 2nd pathologist then decided to go over everything again with all of my films this time. The only thing she could not overrule was the problem with the anterior margin near the skin. She said this is based on how the pathologist cut and that can't be redone so in order to be 100% sure is to go back in for a 2nd surgery and scrape more tissue like route53 mentioned. They all agreed that radiation was not necessary. I had immediate reconstruction with Alloderm but they said this procedure should effect my implants. Does that sound right? Also, what is the recovery time was a 2nd surgery and scraping more tissue. My BS said it is about a 45 minute procedure and not an overnight stay. does anyone know what type of recovery there is from this?