Mastectomy for DCIS???

[summermist]

I was diagnosed with DCIS last summer (at 48 years of age) and to date have had no further treatment other than the initial lumpectomy.  I scored 4 on the VanNuys scale and the doctors seem to think I should be okay without any more treatment - just observation.  The only thing that kept me from getting a 3 was the size of the margins, 9mm, and they said it wasn't worth it to do more surgery for 1mm.  The tumor itself was just under 4mm and intermediate grade w/no necrosis.

All along I have wanted a mastectomy.  The surgeon tells me it isn't necessary but will do it if that is what I want.  The DCIS was very close to the chest wall.  I understand when DCIS returns it is usually near the original site.  My question is this - if I have a mastectomy and the DCIS wants to come back will I be worse off by having the mastectomy?  Since there is not much breast tissue for it to go to it seems it will have no choice but to go to the chest wall, right?

My other reason for wanting a mastectomy is that I am terrified there is more cancer in there they have missed.  My mammo reports always come back saying very dense, difficult to read.  The calcifications were missed on the previous mammo entirely, only noticed when comparing this years to last.

I am also interested in knowing what your thoughts are in having no further treatment than observation for someone at my stage.

Thanks so much for your help.

[apachesky]

Hi...I just read the thread.  

I was diagnosed with bilateral DCIS in January of this year.  I had lumpectomy's done on both breasts and lymph node mapping.  3 lymph nodes were removed and tested clear.  My surgeon could not get clear margins on my left breast.  So, I had a double (simple) mastectomy.  The right breast was removed out of fear the DCIS would return.  I also had necrotic cells, and cysts.  

At the time of the mastectomy I had reconstructive surgery done.  The surgery lasted 7 hrs...and was tremendously painful.  I was in the hospital for 3 nights and 4 days.  One week after the implants were placed, I had to go to surgery again and have necrotic tissue cut from my left breast.  (the skin had to be scraped so thin to remove all cancerous tissue)

One week after that, I returned to the hospital again to have both implants removed because they came through the incisions on both breasts.  Now I have nothing but 2 pits on my chest where my breasts were...and huge 3 inch incisions down the middle of them (my nipples were removed).  

I would think long and hard about a mastectomy.  I am thankful that I don't have the cancer anymore, but I am only 42 years old.  And I am running out of options.  I do not wish to have another big surgery to do a tram on both sides.  My surgeon says I may never be a good candidate for tissue expansion because my skin is too thin.  

I'm so sad.

[surgeon]

These are difficult decisions, in part because it depends a lot on the person's preferences and feelings, and because DCIS is still not perfectly understood, especially in terms of optimizing which treatment for what form of DCIS. It's true that if you were to have radiation, reconstruction with implant alone would be difficult or impossible; usually skin needs to be brought into the area in some manner or another. So if the crystal ball could show future recurrance is in the cards, and if you really feel you'd only want  implants without flaps, then clearly the smart thing would be mastectomy with reconstruction. Another option is following to see if there is recurrance before doing anything; and, probably, taking tamoxifen for 3-5 years in the meantime. Location within the breast isn't much of an issue: being closer or not to the chest wall has no impact on recurrance. And if you were to have mastectomy, there's always a small chance (quite small) of recurrance, and the location of that recurrance would not be predicted by original location in the breast. As you can see, there's no tidy way of making a decision, because we have no way of knowing the future. Statistics are useful only for predicting what would happen to large groups of women, not for any one person in that group. The fact is that with DCIS, the method of treatment most likely to prevent future recurrance is mastectomy; but many, many women would do just fine with less treatment. If you think you'll sleep better with mastectomy and implant, it's perfectly justified to do so.

Please note that you can expect an "official" answer as well: I'm just a surgeon who adds comments when I feel it might be useful.....

[CCF-RN,MSN-rf]

Dear summermist:  DCIS is a condition that is "precancer."  As such, it does not have the ability to spread.  The ability to spread is what differentiates DCIS from Invasive cancer.  Developing either DCIS or invasive cancer indicates that there are conditions in the breast favorable for developing these conditions.  Therefore, it is theoretically possible that a person could develop further breast problems anywhere in the breast.  This is why, in all cases of invasive breast cancer and in many cases of DCIS, radiation therapy is recommended following lumpectomy for local control of disease.  A mastectomy would accomplish the same goal in that all the breast tissue would be removed.  Depending on risk, mastectomies have been done for prevention.  Having said that, each case must be evaluated individually based on the specifics, and calculated risk of that situation.

[surgeon]

I must add that I seem to have mixed your question with another one, which is why I was (erroneously in your case) referring to your desire to avoid radiation.

[Katie Mae]

I have had a 1.2 tumor, two mastecomies - one elective and breast reconstruction.
From my experiences:
My Oncologist had DSIS 8 years ago - had a mastectomy with a "free" tram breast reconstruction - and has no issues since.  She did not go through chemo not did she take any maintenance meds ( tamofifen, etc).
Go with your gut.  Once you have a mastecomy - there are no ducts fro a new tumor to delevope.  My tumor was against the chest wall - but 75% of it was invasive - the tumor was ER positive, but the "here to" ( and that's not how it is spelled -but is is phonetic) was negative.
IF you dop decide to have a mastecotmy - discuss reconstruction options BEFORE you have the surgery - it makes a huge difference.  There are many options and you need to be well informed and find a knowledgeable plastic surgeon with a good reputation and one you feel comportable with.
There are several options with breast reconstruction: natural - meaning not silicon - there are several breast reconstrion optyions: mosat would be better suited with what I know as a "skin saving" mastecomy - these are a "free" tram - a conventional tram - a latisumus breast reconstruction - using muscle from the back under your arm - w/a silicon implant - the first "free" tram is several hours - and pretty time consuming - with a recovery between 5 - to 12 days - or longer - depends on the patient.  I had a convention tram reconstruction - that was 9 hours - 2 days in hospital - but there was GREAT pain management and I was up anround after 5 days.  Not doing anything huge - but I could get up and get dressed and shower - and sit up and walk - not lifting and no friving for 2 weeks.
There are maintenacne issues you should discuss with the surgeon right after a mastecomy - and you should ask if the masctecomy and breast reconstruction can be done togther - very few surgeons will do this - because of the time involved and the length of time you would be under.
It may seem overwhelming - but for me, it isnt something I would want to expereince again, but it wasnt that bad - a lot simpler than I thought - your mind set makes a HUGE difference in your recovery.
Really ask all the questions you can - and if you dont like what they say dont be afraid to find another doctor for another opinion - things work best when you feel comformable with what is going on.