looking for the crystal ball with the answers...

Bailey- I'm sorry.  This is a choice no one should ever have to make.  Breast cancer is so much more complicated than I would have ever imagined.  Lots of options, then options within the options and unfamiliar terminology being thrown at you.  And the whole time all you can think about is- get this thing out of me!  It's hard to know what to do.  I'd look at it this way, though.  You can always get a MX after a lumpectomy.  But you can't get a lumpectomy once you've chosen MX.  Every day I miss my old body and a part of me probably always will.  It wasn't great but it was mine.  But maybe I stopped a new cancer from forming somewhere else.  (I figured once my body made even one tiny cancer cell it was no longer to be trusted.)  This is such a personal, gut-wrenching decision that only you can make.  In the end, just follow your heart and be grateful for a husband who supports you either way.  Good luck with whatever you decide.  (((hugs)))

Yes, the funny thing about worrying about if "all we have is DCIS," is that something like 20% of all dcis cases turn out to have a a mm or 2 of idc when the final pathology is done (although I suspect it is higher than that at places with top technology and staff) and it doesn't change the course of treatment. And the other funny thing about this is that it is really amazing, in a good way, how even though I had a good-sized chunk removed with my lumpectomy and then underwent rads, my breast looks pretty much the same, and FEELS the same, OK maybe a teensy dented, but happy to be with me. 

The 1.75 mm of idc was a {sob} surprise to read in the lumpectomy pathology report, because there had been no indication of it in the mammos, ultrasound, or mri -- but my bs was very comforting in explaining that it likely wouldn't change anything except that I did undergo a sentinel node bioposy (thankfully negative) and consulted with an onc. Thankfully it was just that little "micro amount" of idc, so other than a few weeks of waiting and TONS of stress, I moved right on to rads. And by then, my feelings about rads had changed such that I was much more open to zapping the heck out of any possibly remaining bad cells.

Mentally and physically, I am 100% certain that I would not be the same if I'd had a mx or bx, and am very thankful to have been the choice of lump+rads -- many many do not have such choices, so although choice is hard, it is also a blessing to have it. I met with a plastic surgeon during the time I was waiting for my BRCA results (in case I had either gene, I was going to have an mx or bx with immediate diep reconstruction). I'm glad you spoke with someone you trust who had an mx, because now is the time to get all of the information so that you can make the best educated decision for you.

I do have a very restless night's sleep the night before my annual mammograms (it's now 2 years since diagnosis) because there is always that fear. You cannot reattach what it removed, and I am willing to live with the monitoring for the rest of my hopefully very very long life. But you really have to look deep within yourself, beyond the so ever-present fear, to find the right decision. 

Marybe, just for clarification, you say that "the surgeon said my cancer was a little different than most in that it was ductal, but they also found some invasive cells." So that means that you had invasive ductal carcinoma (IDC), right? That's the most common type of breast cancer so I'm confused about why your doctor would have said that your cancer was "a little different". Even if you had a combination of intraductal carcinoma (DCIS) and invasive cancer, that too is very common.  And since you started with IDC, mets would always have been a risk, although certainly with a tumor of less than 1cm in size, the risk was small.  I'm sorry that you ended up on the short side of those odds.

Bailey's situation is different in that she has DCIS, not IDC.  So when it comes to Tamoxifen, the pros and cons of taking Tamoxifen will be different for her than it would be for someone with IDC.

Tamoxifen provides 3 benefits:

1. It reduces the risk of a local recurrence (i.e. a recurrence of the same cancer in the breast area).  
2. It reduces the risk of a distant recurrence (i.e. a recurrence of the same cancer outside of the breast, i.e. metastasis).
3. It reduces the risk of the development of a new cancer in either breast (i.e. a new primary cancer unrelated to the first diagnosis).

The first benefit is greatest for those who have lumpectomies, since usually after a mastectomy the risk of local recurrence is only about 1% - 2%.  So for those who have mastectomies, a 50% reduction in local recurrence risk is only about 0.5% to 1% (50% of the 1% -  2% risk).  After a lumpectomy, the risk of local recurrence might be low (if the margins are wide and there was a single focus of cancer) or it might be high (if the margins are small and the cancer was very aggressive and/or multi-focal) or it could fall anywhere in between.  So the benefit of Tamoxifen depends on the individual's risk.  If they have only a 6% recurrence risk, this can be reduced to about 3% by Tamoxifen.  If they have a 30% recurrence risk, this could be reduced to approx. 15% by Tamoxifen. 

The second benefit does not affect those who have DCIS since DCIS cancer cells by definition cannot move beyond the breast.  For women with IDC, this may however be the most significant benefit of Tamoxifen since mets is what we all want to avoid and even a small reduction in risk can be important and could be life saving. Marybe, this is where Tamoxifen might have benefitted you but it doesn't factor into Bailey's situation (assuming that the final diagnosis remains pure DCIS).

The third benefit applies to those who have lumpectomies or mastectomies, whether they have DCIS or IDC. Anyone diagnosed with BC one time (DCIS or IDC) has a greater risk of being diagnosed again, sometime during the rest of their lives.  Tamoxifen can reduce this risk, at least for about a 10 - 15 year period (Tamox is taken for 5 years and seems to hold it's benefit for at least another 5 years and possibly as long as 10 years).  Of course for those who have bilateral mastectomies, because the risk of developing a new cancer is so low (usually only 1% - 2%), this benefit is small.  For those who have single mastectomies or lumpectomies, the amount of risk reduction you get from Tamoxifen depends on your age and your personal risk level of being diagnosed with BC again.  

cycle-path, to your comment/question, for women who don't get significant benefits from Tamoxifen in either of the first two categories, for example a woman with DCIS who had a single mastectomy, Tamoxifen is sometimes recommended to address the risks in the third category but sometimes it's not.  My oncologist actually suggested that I not take Tamoxifen because I'd only get this one benefit and it would not last over my lifetime (whereas my risk to develop a new BC is lifelong) however he would have prescribed Tamoxifen if I'd asked for it.  Whether an oncologist recommends it or not, if the only benefit comes from the third category, then usually Tamoxifen would be considered optional (although of course if your risk of being diagnosed again is very high, then there might be good reason to take Tamoxifen just for this benefit alone).

Bailey, I don't know if this addresses any of the specific questions that you had, but the discussion had moved onto the topic of Tamoxifen so I thought I would provide this info.  

As for what you should do, only you can decide what's right for you. If the surgeon has presented you with both options, then either option is reasonable.  If you are not sure about having a mastectomy, it's certainly not nuts to try another excision with a plan to have radiation and Tamoxifen if good margins are achieved. A mastectomy can have a huge impact on your life, and the effects stay with you for the rest of your life.  I didn't have a choice - my surgeon did not present lumpectomy as being a viable option for me.  But if you have a choice, you get to choose. You seem to be leaning towards having a lumpectomy. If that's your preference, don't let anyone else convince you that it's not right.  If do you change your mind, make sure that a mastectomy is what you want to do or make certain that you believe that it's your best option before you decide to do it. As Kate said, you can always decide to have the mastectomy after the lumpectomy, but you can never do the reverse.

Marybe, it really is quite unbelievable that something so small can turn out to be so serious. That's what's so frustrating about breast cancer - you just never know what's going to happen. Everything could look really favorable but that's no guarantee.  

I often see discussion threads on this board written by women who are angry that we haven't found the cure yet.  I agree that it would be amazing if a cure was found but in the meantime I just wish that the scientists would work faster on unlocking the mystery of why some cancers turn out to be nothing serious while other cancers turn out to be so dangerous.  There has to be something in the genetic or biological make up of the cancer that is the key to this. Once that's figured out, doctors would be able to know that your cancer, even though it was tiny, really needed the chemo and the Tamoxifen.  But someone else's cancer, which might be 5 times larger than yours, might not need any treatment except surgery.  A cure would be wonderful but we will be a thousand times further ahead when we are able to pick out cases like yours and act before mets develop. I know that scientists are working on this but every day we wait for the answer is too long to wait.