ALND (lymph node dissection) - why or why not?

IM2C · June 2019

My surgeon is recommending something that seems to be extreme for what I'm typically reading on this board and I'm trying to get some clarity. Did you or did you not have a full ALND and why/why not? What were the indications for it?

I'm pre-surgery but doing neoadjuvant chemo. Prior to chemo, I had an enlarged node on US that was needle biopsied and turned out to be positive for just “isolated tumor cells." This is smaller than even micromets and is considered to be clinically node-negative.

Multiple scans, including PETCT, MRI, etc., have shown nothing else in the nodes.

STILL, my surgeon said I need a full ALND. He seems sort of old-school to me, and I'm concerned I'm not getting up-to-date care from him. (I was thinking he might not even need to do a sentinel node biopsy, and now he's saying a full ALND is the standard of care!)Would any of you wonderful ladies mind sharing your node surgical decision making with me to help? Thank you so so much!!

letsgogolf · June 2019

That seems extreme to me. I had 1 node with micromets and my doctor took 8 in total. As you said, micromets are more advanced than isolated tumor cells. I don' believe it is standard of care to do a complete ALND for such a small amount. I know people who had a macromet or 2 and didn't even have a dissection but instead radiation to the nodes. I would suggest getting a second opinion.

Beesie · June 2019

Ditto letsgogolf's advice re getting a second opinion. More and more doctors are moving away from doing a full ALND whenever possible, so the fact that your doctor is jumping to this when you present only with ITC does seem extreme.

Newfromny · June 2019

This does seem extreme, I had a lymph node test positive before chemo. After neoadjuvant chemo, TCHP, no cancer was detected in the nodes. BS took 4 nodes to test and they were all negative.

LaCombattante · June 2019

I agree with all posters. Sounds extreme, please do get a second opinion.

The current trend appears to be to minimize the extent of lymph node surgery.

As you can see from my signature, I had recurrence in multiple lymph nodes, six to be precise. Even in my case, my medical team offered me an option to only remove the affected nodes + sentinels (to which I happily agreed). I will receive extra radiation instead.

In fact, my doc mentioned a study that indicate equal efficacy but less comorbidites of this approach (the name escapes me now, chemo brain be d*mned! ). There is also a clinical trial underway to compare limited nodes removal & extra radiation with standard ALND.

Hopeful82014 · June 2019

Yes - absolutely get a 2nd (or even 3rd) opinion!

This is a topic I've followed closely since being dx. almost 5 years ago, with at least one known positive node at the outset. Thinking on the issue has changed a lot since then, entirely in the direction of minimizing potential morbidity due to ALND.

After neo-adjuvant endocrine therapy my surgeon agreed to do just the sentinel node biopsy during surgery unless she saw something VERY concerning. I did have one macromet and remaining ITC but the tumor board, my surgeon AND my radiation oncologist all felt that radiation was a better route than more surgery. So far, so good...

The first 2 surgeons I consulted were utterly adamant that ALND was the only course of action. I'm glad I stuck to my guns and found an absolutely wonderful, top-notch surgeon who understood my concerns and was forward looking enough to work with me on the issue.

Three to five years from now I think we'll be seeing many fewer ALNDs. Certainly not for ITC.

There do seem to be regional differences of opinion on the topic. If your 2nd opinion(s) insist on the need for ALND make sure they explain their thinking in detail and answer every one of your concerns and questions. Good luck with your surgery, etc.

ShetlandPony · June 2019

Good for you, IM2C, for asking questions. It’s a steep learning curve, eh?

The 2019 NCCN Guidelines, the definition of standard of care in the USA, say that if the fine needle biopsy is negative, the next step would be sentinel lymph node biopsy, not ALND. If the fine needle biopsy is positive, then either ALND or may consider sentinel node biopsy if the patient meets the Z0011 trial criteria.

Beyond the NCCN guidelines are the current thinking and recent studies that may in the future change the guidelines, which are conservative.

Neoadjuvant chemo complicates things a little, but any doctor should be willing and able to explain his/her recommendations to you and show you the guidelines. It is best if the doctor is part of a tumor board where the various sub-specialists (surgeon, medical oncologist, radiation oncologist, etc.) weigh in. The recommendations should be individualized for you according to the details of your diagnosis (tumor size etc.), your treatment plan (for example, breast conserving vs. mastectomy informs the treatment plan for nodes), and your preferences. Be sure you and the surgeon are clear on the plan so there are no surprises. If a sentinel node biopsy will be done, then what would the plan be if the node is positive? And look over those guidelines.

Definitely get a second opinion. An NCCN Center or a university based cancer center would be good.

ElaineTherese · June 2019

I was in a similar circumstance and ended up with ALND, but my enlarged node tested positive for more than just isolated tumor cells via fine-needle biopsy.

The radiologist who performed the fine-needle biopsy never "marked" which node it was. So, when an MRI and PET scan showed that my nodes were clear after chemo, the surgeon couldn't figure out which one it was. So, instead of just taking out the previously-compromised node and a few of its neighbors, the surgeon took out all 20 levels 1 and 2 lymph nodes. Ugh. Fortunately, I never got lymphadema.

Like you, I was triple positive and Grade 3, so I was slated for radiation anyways regardless of the surgery I chose. Today, lots of BC patients end up getting radiation to the lymph nodes instead of ALND for cases like yours. Definitely, get other opinions!

Smilingstar77 · September 2019

I am in a similar situation and am wondering the same thing. I have stage 2 b breast cancer. I had a lumpectomy where the tumor was removed and four sentinel lymph nodes were removed. Two of the four came back with positive cancer cells. My medical oncologist wants me the have an ALND, the standard chemo treatment (ACT - AC = 4 treatments and Taxol = 14 to 16 treatments) 28 radiation treatments to my breast and armpit followed up by hormone therapy. My MO is aggressive and wants to take every step to stop reoccurrence. My breast surgeon doesn't agree with the ALND and says that I don’t meet the criteria for it. He said there are side effects like Lymphedema, pain, numbness, cording etc. that I have a fairly high chance of getting. He also said that in studies it doesn't really show to make a difference to have an ALND versus women that didn’t with the other treatments I am having. He thinks it’s unnecessary surgery with the possibility of life long side effects. Now I’m torn, but I'm leaning toward no ALND. Anyway, good luck with whatever decision you make.

santabarbarian · September 2019

Upon diagnosis I had one huge node with cancer and several swollen nodes. I had neoadjuvant chemo and got an imaging pCR. My surgeon wanted to do ALND, but I was really concerned about lymphedema. I agreed to have a 2nd surgery if any live cancer was in my breast tissue and we agreed she would take 5 nodes. It turned out that I had a complete response per pathology so was very glad I did not give up all my level one and two nodes.

Moderators · September 2019

Smilingstar77, we welcome you warmly here. You may find this article helpful: The Impact of Surgery and Radiation Therapy on Lymphedema Risk or Reducing Lymphedema Risk: Before Surgery.

Please let us know how we can help !

JRNJ · September 2019

I'm in the same boat, but appear to have a different mindset that others. My surgeon took out 5 sentinel nodes. One came back positive during surgery. She did not go any further and closed me up. Her protocol is 3 or more positive than take out 10 more and send to lab. I am angry and upset that she did this. I guess I didn't understand going in. What guidelines is she following? Do they say exactly 3 move ahead, 1 or 2 do not? I am freaking out and want to ask for additional surgery. If she says no, I don't know what to do. I'm trying to breath and wait for final pathology and Onco type, but don't think I can wait to talk to her about it. Is there anyone that thinks yes, be aggressive, you can't leave doubt like that? anyone that regrets not doing it?

kdrake1007 · September 2019

I did have an ALND but only after the SNB showed 3 of 4 nodes with cancer (1.9 cm, .5cm, .83mm and ITC). Since I hit the magic number of 3 positive nodes, my BS did an ALND 10 days later. Only 1 of the 17 nodes taken were positive with micromets (.8mm). A relief in a way, but I was still slated for chemo & radiation. Just increased my chances of lymphedema. Scans before surgery didn’t show anything in my lymph nodes.

I don’t know if you’ve had your surgery and my situation is probably nothing like your. It was a surprise to me and my surgeon when those pesky positive nodes showed up but didn’t change the rest of my treatment plan.

Ki

ALND (lymph node dissection) - why or why not?

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