ADH, next will have double masectomy, q is about LYMPH nodes

luckymother, 

I had 7 nodes removed, which was necessary as 6 were bursting with cancer. It seems to me it's a little much in your situation, but you need to listen, trust your surgeon. I would think a punch biopsy would be less invasive. They have to cut through the muscle wall to remove them, it is painfull and the nerves are cut. My surgery was last July, and I am not having huge issues, I'm sore, but that is because I just finished radiation yesterday.

Someone else will post with better advice, so far no lymphdema issues...good luck to you !

I had a preventive double mastectomy and no nodes were taken. In the final pathology a small IDC was found. Three weeks after my mx my surgeon did a sentinel node biopsy and it was clear. There is some debate however about whether a sentinel node biopsy can be done after a mastectomy. Angelina Jolie's doctor had a great solution, here is a link to it. http://pinklotusbreastcenter.com/breast-cancer-101/2013/03/prophylactic-breast-dye-injection-an-innovative-idea-from-the-pink-lotus-breast-center/

I think that is a very, very exciting approach. I would ask your doctor about the possibility of doing it. It is not really any more work for them, and if (God forbid) they have to go back in to check the node they could. Best of luck. Please let us know what you decide.

No mine did not. I had no nodes taken. After the MX my BS said we needed to wait three weeks for the breast to heal and then they'd try the SNB. I guess they injected the dye as close as they could to where the tumor was found. One node lit up right where he expected it to be.  BUT with the Pink Lotus approach, you go ahead and they prep you like you are going to have a sentinel node biopsy, they do the mx, close you up, then in a few days you get the final path report if it is not clear they should be able to go back in, still see the blue node and take it out. It is the best of both worlds.

I have never regretted not having them take nodes at the initial surgery. My case is unusual. To me serious lymphedema would be a big deal.

If after you talk to your BS and he wants to talk to my BS, I'll give you his number.

I truly wish we'd thought of this before my PBM.

i just googled whats ADH and it's not cancer. i don't get the sentinel nodes dissection. 

you can have the MX first and see if there's any cancer cells, if there's nothing then you can just move on. there're just some life long SE of lymph nodes dissection, like LE which is no joke. i don't lift anything heavy, i don't carry a scale with me but i just don't carry heavy stuff anymore. no one ever told me that after the dissection, my arm will permanently feel tight. i got 99% back of my arm movement but the tightness is still there. i need to stretch it for the rest of my life. i don't respect doc don't think of any long term SE when they perform something and profoundly change your life. mine was necessary but i don't see you need to go thru it. but i am not a doc.

I also had double mx but I had many areas of DCIS in one of the breasts, the other was preventative. my doc took one lymph node from each side to make sure that they were clean. It did not effect anything and she was actually part of a study that 1 lymph node dissection does not cause lymphadema. I would fight to have only one node removed on each side or none if you feel comfortable with that. They can check the node during surgery and if it is clean, they don't take any more. Lymphadema is a concern when getting more than one lymph node removed. Interestingly enough, they found an area of invasive in the pathology of my tissue after surgery. That area was never seen on any of the diagnostics. I got lucky.

great explanation, beesie. also, my treatment center was doing that long before d.funk's lotus was.

I had a prophylactic bilateral mastectomy with SNB.  In total, they removed 7 nodes (5 left, 2 right).  I decided to do it because although the mastectomy was considered prophylactic, there was enough question about whether any of the untested lumps were malignant (I had a LOT) and the ability to do it after the BMX is lost.  If so, I would then end up having to have more nodes removed.  The risk of LE was discussed, but my surgeon felt like I was a good candidate for the procedure and risk was minimal.  I am glad I did it.

Hi Luckymother, I'm assuming that you had large excisional (surgical) biopsies on both breasts.  If none of those areas showed DCIS or IDC, the odds are reduced that the remaining area contains invasive breast cancer.  DCIS is certainly possible. DCIS is sometimes found next to an area of ADH, but DCIS doesn't really have positive nodes (unless it is DCIS with microinvasion--and even then it's only 10 percent of that group, or there is occult invasive disease).  I second what Beesie said about the issue of needing to take precautions on whatever side has SNB done, and if it's bilateral, you would need to avoid blood pressure measurements and blood draws , etc. on both sides (need to do the foot for blood draws).  Even individuals with invasive breast cancer on one side, when they do a prophy on the other side, they don't take out nodes on that side. 

So the 6 cm refers to the fact that there are 6 cm of calcifications on the mammo?  Without lumpectomies (excisional biopsies), I'd be more cautious about the SNB.  You can have calcifications in the area which could be benign or yes, you could have 6 cm of DCIS in that area.  You don't really know.  With my most recent diagnosis, I had a stereotactic biopsy which found only ADH (severe), and then the first lumpectomy (essentially an excisional biopsy), found multifocal DCIS with no clean margins in any direction.  I subsequently had two more re-excisions to get clean margins (so around 6 cm all told).  I did not have a sentinel node biopsy.  Just lumpectomies and radiation.  I opted for lumpectomy despite concerns about cosmetic changes (which did occur).  I didn't want mastectomy for many reasons, one of which was to avoid the SNB.  I do have family history of bc, but I am BRCA negative.

luckymother, have you considered asking to have an excisional (surgical) biopsy?   Normally that's the recommendation of the surgeon when ADH is found through a needle biopsy.  Where there is ADH, there can be DCIS or even invasive cancer.  Needle biopsies that show ADH are upgraded to DCIS in about 15% of cases and to invasive cancer in about 5% of cases (often just a microinvasion, however).  So usually when ADH is found, the next step is an excisional biopsy to remove the entire suspicious area and ensure that nothing more serious than ADH is in there.

If you do that, then if you decide to move on to the BMX, you will know your pathology and know if a sentinel node biopsy is necessary or not.  If only ADH (or even DCIS, with clear margins) is found then you will be able to avoid an unnecessary SNB. 

In my case, I had two large areas of calcifications which were found to be ADH from the stereotactic biopsy.  I then had the excisional biopsy, which uncovered a lot of high grade DCIS and a microinvasion of IDC.  So I was in that 5% group. I really did not want to have a MX but there were no clear margins after my excisional biopsy and my MRI showed that my breast was full of "stuff", which my surgeon assumed was more DCIS (although it could have just been more ADH or even a non-high risk condition). So I had to have the MX and because my microinvasion was already detected, there was no question that I needed to have the SNB. I had a single MX which uncovered a lot more DCIS but fortunately no more invasive cancer, and 3 nodes removed with the SNB, all of which were clear.

Personally, if not for the invasive cancer, I probably would not have had the SNB.  I am lucky that so far I have not developed lymphedema but I know that I have the risk for the rest of my life and so I will always take precautions. I think too many doctors under-estimate the lifelong impact of lymphedema, and I agree with ballet12's earlier comment about how many surgeon's under-estimate the risk patients have to develop lymphedema, even after just a SNB. I think this under-estimation of risk is evidenced even here in some of what people say they have been told by their doctors. If you need the SNB in order to get a full diagnosis (i.e. if you have invasive cancer and need to know the nodal status), then of course the SNB should be done.  But I find it very surprising when an SNB is recommended with a prophylactic MX. 

Not sure if anyone is still following this discussion, as it's 7 months since the last post. However, this is just the info I was looking for. I've been a high-risk patient for many years, and after finding ALH in June of this year I have opted for PBMX. Yesterday when I saw my BS about scheduling the surgery, she said she would do the SNB--that surprised the heck out of me. If she wasn't the one who told me, it must've been the oncologist--but I know a doctor assured me just this summer that one advantage of doing the PBMX and not waiting for a cancer to develop would be that my SNs would be safe. I'm really worried about doing this, as it would be to both sides.
luckymother, did you go ahead with the SNB? How has everything else gone for you? I'm hoping for good news.