ER/PR Neg: Mast or Lump w/Rad?

It is really a difficult decision. I have IDC so I can't help you. But Beesie and some of the other ladies with DCIS will be along shortly to advise you. So sorry you have to join us here but this is a very fine group of folks!

For me, if I could have stopped after my lumpectomy I would have been thrilled.  A mast is big...to me anyway.  I still ended up with radiation so do know a mast does not always mean no radiation.  It's a very personal decision but I would love to have been able to keep my breasts.  I miss them everyday and have a very real reminder of what I have been through. 

The most difficult part of dealing with DCIS, especially in the beginning, is trying to figure out your own risk tolerance and finding the right level of treatment aggressiveness. It sounds like you have had the biopsy and are deciding on the type of surgery.  Additional findings may still come up that will affect your decision.

I had lumpectomy, radiation therapy, and tamoxifen.  For a small DCIS tumor, mastectomy felt like overkill.  Based on all the factors involved, lumpectomy alone clearly would have been insufficient and radiation therapy was necessary.  I was very strongly positive for both ER and PR so tamoxifen seemed warranted, but I would have preferred your situation on that score.  You do not have to worry about not needing chemo; for DCIS (as long as they are sure it is only DCIS) it is not needed as the cancer has not spread outside the breast.

You need to talk to a breast surgeon and a radiation oncologist and get their recommendations.  If you are considering mastectomy, also talk to a plastic surgeon.  Ask lots of questions. All should be doctors with breast cancer as a major focus of their practices.  Going to a major cancer center is a good idea.  Feel free to get second opinions for any or all specialists. 

The general advice I would give anyone with a DCIS diagnosis include:

1. Take it one step at a time and get answers to your questions.  Don't try to figure out the whole process in one short time period. You should move ahead promptly with information gathering and decision-making but you do not need to rush to an immediate decision.

2. Resist the common initial urge to cut them both off now.  If you do research and discuss with doctors and decide after careful thought to have bilateral mastectomy, that is OK. Don't jump to do it just to get this over.

With  < 1 cm DCIS I felt a mastectomy was overkill.  I like my breasts and nipples and want to enjoy them as long as possible.  Before deciding on surgery, I met with 3 surgeons and 2 radiation oncologists and took approximately 2 months in making a decision.  With DCIS,  all the surgeons I spoke with assured me that I could take my time in making a decision.  I had a lumpectomy and accelerated partial breast radiation (5 days 2 times a day) with the SAVI device.  I am a 34B and the SAVI device seemed an excellent option to spare healthy tissue and is designed to work well for small breasted women.  I tolerated the radiation extremely well and was back to running 3 miles a day 5 weeks after surgery. My DCIS was in my left breast and I was worried about radiation to my heart but with the SAVI device my Physicist was able to write a radiation plan so there was no radiation to the chest wall and heart.  My skin has not been affected by the radiation either because with the SAVI device the Physicist was able to tailor the radiation plan to my specific body, breast size and the location and size of my lumpectomy excision.  All the Dr.'s told me that lumpectomy plus radiation is approximately equal to mastectomy in terms of recurrence risk and survival.  I'm not a fatalist and can live with risk.  After all, every time we get out of bed and go about our day to day activities we live with risk.  

In most cases you can get a somewhat lower recurrence risk after a mastectomy vs. a lumpectomy (or lumpectomy + radiation) but what your actual risk levels are is determined by your pathology and unfortunately this can't be totally known until after surgery.  What's important to know however is that you cannot take someone else's recurrence risk levels and assume that yours will be the same.

After a mastectomy for DCIS, usually the recurrence risk is 1% - 2%.  But if you have positive or close margins, the recurrence risk is likely to be higher.  For those in this situation, often radiation is recommended; this will cut the risk by about half.  Still, the recurrence risk is likely to be more in the range of 5% even after radiation, if post-mastectomy surgical margins are positive.

On the other hand, for those who have a lumpectomy, with ideal margins (10mm or greater) and either a low grade tumor or a possibly even a higher grade tumor that is small and in a single focus (i.e. there's just one small area of DCIS), the recurrence risk, even without radiation, can be very low - close to that of a mastectomy.  http://theoncologist.alphamedpress.org/cgi/content/full/3/2/94/T2

So make this decision based on the specifics of your diagnosis and based on what your doctors say your risks are likely to be in either scenario (they can't know for sure but they should be able to provide an estimate, based on what they do know at this time).  What someone else decided based on their own situation - their pathology, their personal health history, their age, their way of looking at risk, their feelings about body image - might not be right for you. 

Good luck with your decision and with the surgery, whatever you decide!