Removal of all lymph nodes?

I had one small lymph node biopsied, positive, a couple others that looked suspicious The plan was to treat it before surgery in hopes of saving the nodes (though second and third opinions said we could not save them especially given the lobular nature of it, and that it would be risky not to do ALND). The node did not respond to neoadjuvant endocrine therapy, so i was told it was at that point standard of care to do lymph node dissection of all level 1 and 2 axillary nodes. As to effect on life, I'm only a week out so I don't yet know. I'm scared of that myself.

Hi ICE9, I was just having a similar conversation on ALND on a different thread. If you look at my details, they are very similar to what you described and I am 54 and was pre-menopausal. Except my lymph node invasion was too small to see on scans prior to surgery (2mm and 3mm), so I am guessing if your mother didn't have surgery yet her node involvement is larger than mine and possibly more widespread than mine. ILC is very sneaky and spreads without scan detection. I felt the severity and ILC nature of mine was minimized by my BS and I wanted to be aggressive. I found in this process there is no "normal". Different Drs. have different opinions and there is no single clear path. Some Drs. are moving away from ALND and treating with radiation instead to avoid lymphedema, some are not. Some people get lymphedema after ALND, some are fine. My Dr. didn't even give me the option or explain it properly. After surgery I had a severe anxiety attack because she only took 5 nodes and 2 were positive and she also told me no radiation (with mx) or chemo unless 3 or more positive nodes. But the RO recommended radiation (I dumped my BS). I wanted the ALND, but it was really too late, she wouldn't do it, and I didn't want to delay additional treatment finding a new Dr, so I felt a little better because I was getting the radiation. NCCN guidelines pretty much recommend either ALND or radiation for 1 to 3 macro nodes. But the kicker is you don't know if you have additional node involvement if they are not removed. Regarding chemo, with ILC she will likely be in a gray area like me. I had three opinions on chemo. I don't know what to do with you, no chemo (NCI), and yes chemo (sloan). I had the chemo. Sorry I'm not really helping you. I still don't know what the right decision is regarding ALND or not, and am still paranoid they didn't get it all, especially reading this thread and hearing there are Drs. that want to do the ALND for ILC, but I think I would be more paranoid if I had ALND and no radiation. I think the radiation is important. I do have pain and numbness in my hand and arm, which I had before surgery, it went away after surgery, and came back 3 weeks after chemo. I think it is neuropathy, not lymphedema, but I don't really know, no one has helped me with it yet.

JRNJ initially, Letrozole with Zolodex. I was unconvinced the Zolodex was suppressing my ovaries, and my gyn and BSwanted them gone, so I had ooph halfway through. Stayed on Letrozole.

SummerAngel is right; increasingly, breast surgeons have been trying to minimize the number of nodes removed. I was treated about six years ago, and my surgeon lost track of my positive node by failing to insert a clip to indicate the location of said node. So, when an MRI and PET scan showed my nodes to be clear of active cancer after chemo, my surgeon took out all 20 of my Levels 1 and 2 lymph nodes. I was seriously annoyed but very lucky. I have not yet developed lymphadema. If I were you, I would get additional opinions on the best treatment for your Mom. There's no need to get ALND if it's not necessary. And, many who do get ALND will not be as lucky as me. Good luck!