Removal of all lymph nodes?

Ice9

Hi everyone! Hopefully this is the right board to post in. My 55 year old mom was diagnosed with Stage 2 ILC. Right breast 2CM lump near armpit. Cancer was found only in 1 lymph node. Everything tested HER NEGATIVE and estrogen and progesterone positive. Her oncologist kept saying how treatable this is and reassuring us it will be ok! June 9 she will be getting a lumpectomy/ removal of some lymph nodes/ breast reduction/ and then radiation to follow. They have to see after surgery to see if she needs chemo.

She just had a follow up call and now her oncologist is saying she needs all the lymph nodes removed in that armpit to make sure the cancer doesn't spread. Is this normal?

If you've had all your lymph nodes removed in one arm, how is that effecting your life now

also, has anyone been givin this diagnosis before? What was your experience? Just trying to have a hopeful outlook and be completely prepared before June 9. Thank you so much everyone!

MountainMia

I'm going to guess that the oncologist wasn't clear in what they said. I would encourage her to call back and clarify. Do they really intend to remove ALL lymph nodes??? or something else, like all the "sentinel" lymph nodes. And if they say all of them, they should explain to her why, and what that would entail, including recovery.

Good luck to her.

KMom57

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.

buttonsmachine

This does not really sound normal to me, but I had IDC not ILC. It might be good to consult with an NCI designated cancer center if you haven't yet. Sometimes radiation to the axilla is just as effective as removing all the lymph nodes in surgery, and the risk of lymphedema is smaller. Hope that helps, best wishes to you and your mom.

JRNJ

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

kmom57, what type of endrocrine therapy did they try? I read Tamoxifen does not always work with ILC. I had a Lupron shot last week and I am about to start Aromasin.

KMom57

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

I would not follow anyone's "feeling" about this. There are quite a few recent studies that discourage the removal of many lymph nodes in patients with few positive nodes as there is a much higher risk of issues (particularly lymphedema) later. Here are a few:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6939720/

"Women without SLNB metastases should not receive ALND. In patients with micro- or macrometastasis on SLNB, axillary radiotherapy successfully replaces the ALND. The arm morbidity rate was significantly lower in patients with positive SLNB treated with breast surgery and radiotherapy for three axillary levels and/or to the whole breast. Axillary dissection could safely be omitted in patients with 1, 2 metastatic nodes on SLNB and without extranodal extension who undergo BCS and whole breast radiotherapy or in patients with metastatic nodes on SLNB who underwent BCS or mastectomy and have adjuvant radiotherapy for the all three axillary levels, the supraclavicular fossa, and ± mammaria interna and/or the whole breast or chest wall."

https://jamanetwork.com/journals/jama/article-abstract/2653737

"Among women with T1 or T2 invasive primary breast cancer, no palpable axillary adenopathy, and 1 or 2 sentinel lymph nodes containing metastases, 10-year overall survival for patients treated with sentinel lymph node dissection alone was noninferior to overall survival for those treated with axillary lymph node dissection. These findings do not support routine use of axillary lymph node dissection in this patient population based on 10-year outcomes."

https://cancerres.aacrjournals.org/content/79/4_Supplement/GS4-01

"Axillary recurrence after 10 years in patients with a tumor-positive SNB who were treated with ART is extremely rare and not significantly different from patients who were treated with ALND."

ElaineTherese

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!