Mastectomy with Deep Margin

Nana60

Mastectomy with Deep Margin

Nana60

I had a simple mastectomy in August for extensive DCIS. The pathology shows no invasion, but it does say, "Tumor extending directly into deep surgical margin in multi-focal areas." Margin is 0mm! My breast surgeon is not concerned, but I have consulted two radiation oncologists who have advised radiation. (One Dr. said he only sees this 2 times a year. I am very upset that this has happened to me.) I thought the mastectomy would be all I need; now I am facing radiation. (I also had TE placed at time of surgery and am hoping radiation will not cause problems there.) Any advice would be greatly appreciated. Thank you.

Paula1231

Hello Nana,

Can you talk with the pathologist who reported the margins?  Ask what this means exactly.  Typically for DCIS the tumors are confined to the ducts and have not invaded surrounding tissue or lymphatics.  If this is the case, you would not need RADS.  Get the path to clarify before making any decisions.

Paula

Beesie

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

mom3band1g

I had a mast in March and finished my rads in July.  I did have TE's in place.  I had several margins that were less than 1mm on the chest wall and only 1mm margins on the skin.  Most women who have mast don't need radiation but it's not a given.  My rads onc said I would greatly reduce my risk of recurrance (from at least 35% down to 4).  It was a pain going every day but I tolerated it very well.  I was very tired in the end but I also have 4 young kids!  Good luck.

Nana60

Thank you so much for your replies. I feel better now about taking the radiation.

Nana60

Did you have any problems with your reconstruction? Thanks & congratulations!

mom3band1g

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!

Nana60

mom3band1g,

I am getting my fills before the rads begin & my PS said we will have to wait 6 months for the exhange. Is there anything I can do to to take care of my skin during rads?

Nana60

Beesie, I wanted to let you know what an encouragement you have been for me during this difficult time. I have read many of your previous posts regarding mast positive margins. I feel so alone when even my oncologists seem to find this to be rare. Everyone is super supportive and it's nice because we have something in common.

Nana60

Hi Paula,

My BS tells me not to worry about the margins, but I am very concerned. I am thinking of getting a second opinion on the pathology. I am also wondering if they can do an MRI to see what might be remaining. (This is something that I asked my BS for before surgery and she said it wasn't warranted in my case.)

mom3band1g

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.

mom3band1g

Paula,

Rad is almost always suggested for DCIS.  Just FYI.

melindastn

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. 

imbell

I had a lumpectomy, left breast. When I saw the rad onc he said I didn't have clear margins and they couldn't do rads. Had chemo and then chose double mastectomy (out of fear probably). Had 25 rads. Went on hormonals. Had a recurrence18 months later. The one thing that ticks me off is that after all that treatment therre were no scans done to see if  that the mastectomy had worked. Obviously not as the recurrence was in the same spot.

Beesie

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.

Nana60

Beesie, I was told before my mast that I could possibly have a microinvasion. My pathology did not find anything, but I can't help but be concerned that they may have missed it.

Beesie

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

Hi Beesie, Yes I had a seninel node biopsy of 2 nodes and they were both clear. It's just this darn 0mm margin that I am dealing with. Can't I request a mamogram or CT scan to make sure that there is still some DCIS remaining?

mom3band1g

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.

Beesie

Nana, if you had the SNB and your nodes were clear, don't worry about whether or not you had a microinvasion that was missed.  If you had one, it's now gone - removed with the rest of the breast tissue.  The risk of the microinvasion is that it could lead to nodal involvement (that happens in about 10% of cases of where there is a microinvasion) and your nodes were checked and are clear.  So don't worry.

I appreciate that your concern may be that some invasive cells were near the margin against the chest wall but honestly I don't think you should worry about that either.  Hopefully all of your breast tissue was thoroughly examined under a microscope but there's no question that the tissue at the margins would have been the most carefully examined.  So if there was a microinvasion near the margin, it's almost certain to have been found.  The type of situation that immarybell described, which is what I suspect has you wondering about your situation, is not the same thing at all.  She mentions that she had a bilateral mastectomy, chemo, rads and hormonals - with all that treatment, it's highly unlikely that her initial diagnosis was DCIS with just a microinvasion.  I suspect in her case there was probably quite a bit of invasive cancer, probably near the margin.  Not a comparable situation at all.

As for tests, I agree with what mom3band1g said.  A good portion of my area of DCIS didn't show up on my mammogram either (although my MRI did show all of it).  But I'll take this point a step further.  Once you are done with our surgery - whether it's a lumpectomy or a mastectomy - if there is are any cancer cells left, we're talking small numbers of random cells. Tiny tiny microscopic amounts.  There is simply no way that a mammo or ultrasound or MRI or CT scan or PET scan would see those cells. I've read that breast cancer cells can be in the breast for years and year - sometimes as many as 10 years - before the mass grows large enough to be detected by screening tests.  The small amount left after surgery (if there is any) would be considerably smaller than anything that could be detected by these tests.  And that's why radiation is given, if it's judged that there is a significant risk that some cancer cells might be left.  The job of radiation is to track down those unseen random cells and kill them off.  

I hope that helps/clarifies.  The net of it all is that I don't think that a microinvasion, particularly one near your chest wall margin, is something that you need to be worrying about.  Of course, having just been diagnosed with cancer, it's natural that you are going to worry!   I remember that well!  The only thing that will solve that is time.

Nana60

Beesie, Thanks once again for your comforting words of wisdom. This is a journey of the unknown for me and it isn't easy to navigate, so I really appreciate your replies.

Nana60

mom3band1g, I heard from one of my doctors that the reason for my positive margin could be because I am small breasted. Have you ever heard anything like that? (Forgive me if this is TMI.)

mom3band1g

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.

jamiehop

Thanks nana60 for pointing this thread out to me.  I was small-breasted as well (<A cup), and had margins<1mm. Maybe there is a connection. Failed lumpectomy as well. 

I had a CT scan after my surgery as I had some micromets (.2mm) without any sign of invasive cancer in my breast tissue.  They wanted to make sure there wasn't a secondary cancer brewing somewhere.  That CT scan was referenced by a 2nd opinion surgeon in looking for any residual breast tissue, which was really helpful in determining if another surgery would be necessary.  Not sure if an MRI would be about the same.  

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.

CrunchyPoodleMama

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.?

Kitchenwitch

Crunchypoodlemama: my first BS said she would be removing at least some of the fascia during my first lumpectomy (I have large breasts) and she said I would never know or feel the difference. She was right. Whatever was removed made no difference at all in how I felt. i'm not sure what has been removed since but I have never felt one speck less strong or capable (at least till the damn mx and recon....). Before the mx  I was doing pushups (admittedly not millions but as many as I felt like) and anything I felt like.

CrunchyPoodleMama

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.

Kitchenwitch

Yes, C.P.M., we do want 'em removed and we don't seem to miss 'em which is great. The one thing that really scares me is feeling weak and disabled for life, but apparently those fascia are not as necessary as you'd think for that. I'm going to email you! : )

Mantra

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.

Nana60

I am interested in this topic and hope others continue to share their experience as it appears to be a pretty rare occurrence.