Mastectomy with Deep Margin

Nana, unfortunately having a mastectomy, even for DCIS, does not always mean that you can forgo radiation.  In situations like yours, radiation is often recommended.  While the recurrence rate after a mastectomy for DCIS normally is only 1% - 2%, a recent study has suggested that for those who have very tiny or negative margins, as you have, the higher recurrence rate may be significantly higher.  For this reason, radiation may be recommended because it can cut your recurrence by at least half.  Back when I was diagnosed (5 years ago), radiation after a mastectomy for DCIS was quite unusual but these days, it's becoming more common.  There have been quite a few women who've come through this board who have required radiation after a mastectomy for DCIS - you are far from alone.

http://www.ncbi.nlm.nih.gov/pubmed/18954711

Nana60- all recon had to be put on hold during rads.  I did not want to be 'big' so this was not a problem for me.  I had all the fills I needed before rads.  They cannot fill you during rads.  After you are done the skin has to heal so that puts off your exchange several months.  My ps is thinking I can have my exchange in Nov.  So that's about 5m after the end of radiation.  I hated having to wait but I do want the best results.  You really do get used to the TE's!  Never thought I'd say that!

nana - I  dont' think that this situation is that rare.  I did have my slides sent off for a 2nd opinion and they agreed.  So I did the rads.  I used 100% pure aloe gel, no colors, dyes, etc.  After a few weeks I did switch to X-Claire which I got from my rads onc.  I was told 6m out before my exchange as well but after seeing how well my skin did he moved me up a month!  I saw the radiation as my insurance for those cells left behind.  That being said, I do wory very much that it will return.  I think everyone has that concern though.

I also did not get clean margins after my mastectomy.  My oncologist surgeon did a second mastectomy on the cancer side and did get clean margins the second time.  I was then able to avoid rads.  I will say my implants have been painful for two years and now I am heading to New Orleans to the Center for Breast Reconstruction to have them removed and have natural breast made from my own tissue. 

I sure hope everything works out for you. 

Nana, I'm glad that my posts have been helpful. 

immarybell, since you had chemo after your initial diagnosis, it means that your diagnosis must have included invasive cancer, as well as DCIS. This is a very different scenario than someone who has pure DCIS - chemo is never required for pure DCIS.  For anyone who has a combination of DCIS and invasive cancer, the staging, diagnosis and treatment is based entirely on the pathology of the invasive cancer; the DCIS pretty much becomes irrelevant, except that it needs to be removed.  Because of this, a diagnosis that combines DCIS and IDC is not called DCIS, even if the majority of the cancerous tumor is made up of DCIS.  And a close margin on invasive cancer is an even greater concern than a close margin on DCIS, and likely carries with it a higher risk of recurrence, which unfortunately you have had to deal with.

A microinvasion sounds scary because it's invasive cancer and it changes the staging from Stage 0 to Stage I.  However in almost all cases a microinvasion doesn't change the treatment plan vs. a diagnosis of pure DCIS, and it barely changes the prognosis. 

Did you have a sentinel node biopsy at the time of your mastectomy? 

Nana60- I can tell you from personal experience not all DCIS shows up on any testing.  The only way to be sure is a biopsy.  Of my 6.5cm lesion only 1cm showed on any type of testing.  In the end mine went from nipple to chest wall.

nana60- I was very small breasted as well.....AA, maybe!  I had not heard that that had anything to do with it but less breast tissue is, well, less tissue!  I dont' see how that has anything to do with margins though.

Interesting discussion, everyone... I had a <1mm margin that was deep (against chest wall) with my re-excision, and now I'm going to have a mastectomy. Wonder if my chest wall margin will still be considered <1mm after the mastectomy or if (because there's no more DCIS there now) it will no longer be considered a close margin.

That surgeon (at the Mayo Clinic) said that he routinely removes the fascia from the muscle and had asked if my surgeon had done so.  She hadn't.

So, if you are a small breasted woman landing here before surgery, it might be worth asking your surgeon if they remove fascia from muscle during mastectomy.

Hmm... in my over-a-year of having DCIS, I hadn't heard of this. That's probably worth its own thread (if it doesn't have one already -- need to do a search). Since I'm small-breasted and had a close chest-wall margin, I will ask about this, but what do I want the answer to be? I assume if they remove fascia, it improves the margin and lessens the recurrence risk, but what are the drawbacks? I assume longer recovery time... does it permanently affect muscles, e.g. make it more difficult to weight-train etc.?

Good to know; thank you, Kitchenwitch! (BTW, I sent you a PM the afternoon of your surgery to send you well wishes, or thought I did - I think it disappeared into cyberspace though! Hope you're past the worst of recovery and are on your way to feeling great again!)

So, basically, for those of us with close margins, we DO want the surgeon to remove the fascia. Got it.

I had a BMX but done at two different times with two different doctors. In both cases my surgeons removed my fascia. After a lumpectomy, the closest margin was at the chest wall and I assume that's why she removed the fascia during the mastectomy (to ensure all breast tissue against chest wall was gone). However, the second surgeon said she normally does not remove the fascia during a prophylactic mx but I guess something caused her to change her mind.