Multi-Focal DCIS

I had a lumpectomy for DCIS which was located on the side of my breast and under the nipple.  My surgeon did not get large enough margins and my follow-up mammography showed another suspicous calcification cluster along with a lot of calcification in between the two original malignant sites. Both the radiologist and the surgeon have suggested mastectomy since my mammography is difficult to read and no guarantees can be made about the remaining calcifications.  But, if I so choose, my surgeon will try to a re-excision, but I will have to lose my nipple because that lesion was micro-invasive.
I'm torn, because I do not want to lose my breast.  However, I know I have a higher than normal chance of re-occurance because of all the calcification in my breast.  I also know that implant reconstruction after radiation is very difficult.
Part of my wants a biopsy of the last suspicous cluster before I have a mastectomy.  Am I just resisting the inevitable?

[Cleveland Clinic]

Dear bayla511:  There are several things to consider in deciding between a mastectomy and lumpectomy + radiation.  One is whether both procedures will remove all of the necessary tissue (problem).  Another is if you opt for lumpectomy will the cosmetic result be acceptable?  Or will you end up needing both radiation and reconstruction?  You may also want to check with your doctor regarding the “microinvasion.”  Invasion generally indicates a cancer rather than DCIS.  It may or may not change options but should be clarified.  Finally, if you are really torn, consider a second opinion with another surgeon who specializes in breast surgery.  You may also want to chat with a plastic surgeon who specializes in breast reconstruction to hear all the options before you make your decision.

[bayla511]

It is my understanding that there are two types of microinvation with DCIS:  DCIS-MI1 and DCIS-MI2 with the latter being the more serious. My surgeon is the acting chief of a very well respected institution in NYC and he presented my case in a departmental conference.  He said all the other faculty agreed that mastectomy was the route to take.

My first surgery left me with an excellent plastic result.  I am just wondering how disfigured a second lumpectomy would leave me and whether or not a mastectomy is an overkill solution or the common practice for people with my condition.

[HazelLynn]

Hi, dont know if this will help, but I was in a very similar situation to you.  I had 5mm of dcis and 1mm proved invasive, I had a lumpectomy and the doctors thought that the 1mm was so close to the margin that there could have been more invasion - they offered to do another lumpectomy but I insisted that I had a mastectomy.  Apparently there had been a lot of multifocal elements, luckily after the mastectomy all the nodes, the breast and the multifocal element proved negative.  For my peace of mind, I felt that the mastectomy had been the best step as I would have been panicking about the multifocal elements.  Cosmetically after two weeks of not having a breast - I have no problem - I wont have reconstruction as the bras/prothesis are fine, I am also on Tamoxifen for the next five years.  Good luck, Hazel

[bayla511]

Dear Hazel,
Thanks for sharing.  It sounds like we have similar cases.  Did you have DCIS in more than one spot to begin with?  
In any event, you sound like a strong woman and I wish you all the best.
Barbara

[HazelLynn]

Hi,  No, I had only one spot of DCIS. I had a lot of other things going on too, such as microcysts, cysts, calcifications and fibroids - and then on mammogram it was discovered that there was a grouping of pleomorphic microcalcifications.

I had  a mammogram only seven months before and that was clear, so we caught it very early.

The doctor had also mentioned that there was multifoci - lots of it - and we felt that they could cause a future problem - thank god though after the mastectomy these did prove negative.

My surgeon/doctor is convinved I am cured, I hope so as I have four young children.  I need to see the Oncologist in the morning, I am hoping that he is of the same opinion.

Keep in touch.
Hazel

[bayla511]

I wish you the best of luck.  I know you will dance at all your children's weddings and live to see many, many grand and great grandchildren.
Best,
Barbara

[HazelLynn]

Hi Barbara,

Just wondererd how you are getting on? and if you have made a decision yet.

Wishing you well.
Hazel

[WendyMomGrandma]

Hello I was also diagnosed with DCIS and had to make a decision whether to have a lumpectomy with radiation or a mastectomy. I am 47. With my family's guidance I decided not to take any chances and had a mastectomy. I was fortunate to have a wonderful plastic surgeon who put in a tissue expander at the time of my surgery. Unfortunately, I also had microcalcifications under the tumour that was biopsied. My margins were also not good, so I ended up having to undergo radiation anyway. This was not a good scenario with the expanded breast (with a metal port)  as I am starting to have more pain and scar tissue from the radiation. My surgery was December and my treatments were Feb, and March.
I know how difficult the decision is to make, but my Oncologist told me that if had only had the lumpectomy (based on my pathology) they would have to go back and do the mastectomy anyway. I am glad of that. However, if I had to make the decision over I would have waited on the reconstruction. I feel I may have a long road ahead of me as far as that is concerned.
All the best to you and your decisions regarding your surgery. Make sure you do what's right for YOU! It's your body and you are the one that has to live with it. Only the women who wear this badge can understand your feelings!!
Bless you,
WendyMomGrandma