Saw my surgeon

Thanks for the updates.  I'm glad that things are becoming clearer in your mind.  And I'm glad that our inputs to your previous post were helpful.

Now I'm going to complicate things!  Sorry.    While I believe after a biopsy showing DCIS, surgery as a first step (and in some cases, an only step) is necessary in order to find out what's really going on and what the diagnosis really is, I'm less sure about the need for a sentinal node biopsy for those who having a lumpectomy.  Here's the issue:

The removal of any number of nodes presents a risk of lymphedema.  The risk is higher if you have more nodes removed but even with an SNB and the removal of only 1 - 4 nodes (that's the norm for an SNB), there is a risk - probably in the range of 7% - 10% (but I'm not that up-to-date on that so someone might have better numbers).  While lymphedema usually develops within a short period after surgery, the risk actually stays with you for life - you might get an infection in your hand years from now and lymphedema could develop then.  Therefore those who have nodes removed must remain diligent and take precautions for the rest of their lives (although some women choose to take no precautions; it's a personal choice).  Although many cases of lymphedema can be managed, once you have lymphedema, you have it for life.  So it's not something that can be cured or that will go away.  For those reasons, having the SNB and putting yourself at risk for lymphedema is a serious decision.

The question therefore is "do you need the SNB?"  With DCIS, cancer cells cannot travel to the nodes. So if your final diagnosis is pure DCIS, then you don't need an SNB.  The reason SNBs are given to women with DCIS is just in case some invasive cancer is found. Once any amount of invasive cancer is found, nodal involvement is possible and therefore the nodes need to be checked. Certainly with grade 3 DCIS, there is a risk that some invasive cancer might be found when your tissue is examined after surgery.  But.... because you are having a lumpectomy, if some invasive cancer is found, an SNB can always be done later, in a second surgery.  It's not ideal - your surgeon and you both probably prefer to get this all done at once and that's why the SNB is being proposed for your upcoming surgery - but it's one way to avoid an unnecessary SNB and an unnecessary risk of lymphedema.  The issue is more complex for those who are having a mastectomy for high grade DCIS.  SNBs are very difficult to do after a mastectomy (the SNB process involves injecting dye into the breast, the dye travels to the nodes, the nodes with the dye are the ones removed; without a breast there is no place to do the injection) so women with grade 3 DCIS who are scheduled for mastectomies usually do end up having an SNB.  But with a lumpectomy, you have a choice.

It really is your choice - it's one risk (having to go back into surgery for an SNB if some invasive cancer is found) vs. another risk (the risk of lymphedema developing as a result what might an unnecessary SNB).  So it's something for you to read up on and think about.  Ultimately it is your decision; if you agree with your surgeon about doing the SNB, that's great.  If you don't, you have every right to tell your surgeon that you don't want the SNB to be done. 

I thought this article by Tuttle et al. (2010) was helpful in explainging why SNB is not useful for people with DCIS:

http://jncimono.oxfordjournals.org/content/2010/41/117.full.pdf

I have another thought...have they given you an MRI? My initial biopsy showed ADH, lumpectomy pathology was ADH and DCIS. Prior to my BMX, my surgeon ordered an MRI. Is there any chance  your surgeon has been talking about getting a presurgical MRI?

That would maybe pick up anything that may be close to the sentinel nodes. I did not get an SNB with my lumpectomy but I did with the  BMX, only because they could never check them again afterwards.

As always, I completely agree with everything that Beesie wrote. I was in a similar place as you -- lumpectomy and decision regarding yes/no to snb at the same time. 

I had grade 2 dcis and no indication from mammo, stereo biopsy, mri, false positive mri that led to another biopsy, ultrasound, etc that I had anything more than stage 0. My very experienced bs followed protocol and I did not have the snb during my surgery, and I was very comfortable with that decision because of the lymphedema risks.

Well, as the saying goes, hindsight is 20-20. My final pathology report listed 1.75 mm of grade 2 idc, so exactly 2 weeks after my lump. surgery, I again went under general (the lump surgery was my first time and I really wanted local instead) and had a snb. Thankfully, no positive nodes.

The recovery from the snb was a lot worse than the lump. recovery, so I would not wish that on anyone unnecessarily. Of course I wish I'd only had 1 surgery, but truthfully, I am still glad that my bs proceeded the way he did. Had I had lump+snb surgery and then learned that it was pure dcis and negative nodes, I do not think I would have the same inner peace/closure feeling I have.

It really is true that you don't truly know what you've got until the final pathology is in, but you are doing everything right to become educated now and make the right decision for you.