Axillary Lymph Node Dissection

annabananas · January 2014

I was just informed that I need an axillary lymph node dissection. My breast surgeon told me that it is because I have a 3 cm breast tumor (invasive ductal carcinoma) and 3 out of 6 sentinel lymph node micrometastasis. I had the sentinel lymph node biopsy that showed this when I had the lumpectomy. There is so much controversy about this axillary lymph node dissection procedure due to the number of incidences of arm lympedema and nerve problems, and also it is thought that full axillary and breast radiation is just as successful as the axillary lymph node dissection. These are relatively new findings.. Heard that there is much post operative pain. I am seeking a second opinion on this.

Jennie93 · January 2014

I also had 6 nodes removed with the SLNB and 3 were positive. (A 4th was later found to have some microscopic cells.) My MO & RO both agreed that there was no advantage in going back and taking out more. They radiated the heck out of all the remaining lymph nodes, and put me through chemo, 6X TC. They were confident that would take care of any "bad guys" that might have been left.

coraleliz · January 2014

annab-See what your 2nd opinion has to say. I had 2 positive nodes(not micromets), no ALND, but RADs. My MO wanted me to have an ALND. My BS wouldn't do it. So I would have had to find a new surgeon. Some women feel better getting things cut out. My armpit was still quite sore from the first surgery. I didn't ever think it would be right again. I was relieved to not have the ALND

ruthbru · January 2014

Definitely get the second opinion. I had an ALND because my surgeon didn't trust the SN procedure, but that was 7 years ago when it was just new. If it turns out to make sense to do it, and if this helps at all, I didn't have significant increased pain from it, nor any nerve problems or LE resulting from it either.

Gully · January 2014

Coral: interesting about your BS refusing to do the ALND. Mine did as well, I am actually glad to hear this from someone else. I had BMX and a "surprise" IDC in the prophylatic breast, so no SNB. My MO wanted me to go back to surgery for ALND and my BS said no she would not do it. I had a second opinion at Dana Farber, they said they wanted to put my case before their tumor board. Options on the table were ALND, and radiation to mastecomy site and axilla or just Tamoxifen. They decided on just Tamoxifen. I was happy with their decision, but am glad to hear someone has gotten the same advice of no ALND.

Faith316 · January 2014

I have had axillary node dissection twice and did not have significant pain either time. good luck.

Sandymomto3 · January 2014

I had an axilary node dissection in September 2013. Pain from the surgery which included a lumectomy was never terrible. Only used 2 prescription pain pills after discharge from hospital. Advil worked fine for that for my post op discomforts. Second opinions are never a bad idea if you are unsure.

flannelette · January 2014

I had axillary node dissection in summer 2012. No pain, no lymphodema, don't think I even took a tylenol.

Lily55 · January 2014

you can get lymphoedema at any time after AND even years after, so it is a lifelong risk

ruthbru · January 2014

The risk goes down with time; but yes, it is lifelong.

annabananas · January 2014

Hi Jennie,

Thank you for sharing your experience. Hope the second opinion I get next week tells me I do not need the axillary lymph node dissection surgery. I have not even been referred to a medical oncologist yet, just the breast surgeon here who recommended it. I am an avid surfer so I want to avoid any loss of function to my arm, but if it will save my life, then so be it. Would opt for radiation over more surgery, however more radiation could also lead to lymphedema. Recovering from my lumpectomy and sentinel node biopsy was a breeze.

annabananas · January 2014

Hi Sandymom,

Good to hear that you had no side effects from your axillary node dissection. My breast surgeon told me that literature referring to the high 20% incidence of side effects: sensory loss, lymphedema is overplayed. She told me that the thinner you are and the more in shape you are, the less chance of side effects.She told me that after the surgery, I would go home with a drain to a self suction bulb for a week to 10 days. It is also difficult place for a surgical wound to heal- being that it is in your armpit. I am an RN so I always worry about infections!

Quasi · January 2014

Next Monday marks my 4th week post op. I had a RX with ALND and LD flap reconstruction. I read the research about radiation vs ALND and radiation seems to be associated with a lower incidence of lymphedema. My surgeon carried SLN biopsy and ended up dissecting 12 LN at the same time of my MX. I didn't have to go through another procedure because the pathologist was in the OR and she was looking at the LN as they were being dissected - he ended up removing level 1 because 2/3 sentinels were positive. However, my BS also carried out Reverse Arm Mapping, which is a procedure that entails injecting blue dye to see where all the veins that drain the lymph fluid are and to avoid these lymph nodes. I did not want to get radiation because I was going to get chemo anyways so I didn't want to end up doing both - but as it stands now I might have to get radiation (go figure!!). Your BS if trained to do this will avoid any injury to your nerves. However, I have to say that I am still hypersensitive in my top arm and it is still painful under my armpit. It is also still painful to raise my arm and sometimes it is numb. It has improved over the past 2 weeks. Week 2 was the worst for me. I don't know about the side effects of radiation to this area but ALND is not a walk in the park - it is difficult and you never know what could happen. If you can get radiation and it is as effective, this might entail less pain and suffering.

coraleliz · January 2014

My surgeon also told me that because I was thin, athletic & had more lymph nodes than usual, I was less likely to develop LE. She wouldn't do the ALND. She felt that radiation was a better choice with less of a chance of LE. On the Stanford LE website, it mentions surfing & rock climbing as activities with a high risk of developing LE. I don't surf but do climb, Not since my surgery though. I have mild LE on my chest/side. Hoping it doesn't get worse.

annabananas · January 2014

Hi Quasi,

Thank you for sharing! I was told if I have a axillary lymph node dissection that I will get aggressive physical therapy for any problems that arise relating to numbness or lymphedema. I do not know if you are pursuing that or not. I was told that I need chemo first then radiation, but other than the breast surgeon, I have not yet had the benefit of meeting with a medical oncologist and radiotherapy doctor. Hope I will get answers at the University of California San Francisco.

annabananas · January 2014

Hi Coraleliz,

Thanks for sharing the Stanford LE website re: lymphedema. I will definitely check it out. I am curious to know how did you get side effects when you did not have an ALND. Was it from radiation? Take care

Xrayalli · March 2014

Annabananas- I completely struggled with my decision to have the ALND. In the end I went with. Tuesday will be the week 2 mark and I am in a lot of pain. I know everyone is different but did your experience get better after week 2? Did you have swelling? I am okay with a little pain and numbness but the swelling is really bothering me. What did you do to relieve your discomfort? I've heard hot and cold are not good for it. I've been taking ibuprofen and Vicodin for some relief, which barely touches it. Although I am having problems I have to believe I made the right decision, my sentinel node biopsy showed macromets in one node and I am glad to know the rest of the nodes were negative. Anyway, thanks for any advice in advance. Alli

Anonymous · March 2014

Xrayalli,

I too struggled with the decision to get ALND for a micromet after my sentinel node. Even though the recovery has been challenging, I'm still glad I did it, as now I know that my other nodes were clear. But, for me, it has been a long recovery and much more difficult than the Mx.

I went back to my surgeon after about 3 weeks and had the swelling drained with a needle. It didn't hurt at all because my armpit is numb. I felt so much better once that big lemon-sized lump of fluid was gone. At least I could put my arm down comfortably. I also found that the super-sensitive feeling and what I think was nerve pain went away after about a month.

But then I developed cording, and am finally starting 2x/week physical therapy tomorrow - - 10 weeks after ALND surgery. My PT couldn't believe I wasn't given exercises to do after surgery and than no one had talked to me about lymphadema. Luckily I don't have any lymphadema yet, but she gave me good advice about how to prevent it.

So...my recommendation is to get a referral to PT as soon as possible! Taking warm baths and just resting my arm in the evening helps me... but the whole thing is a bummer and I hope you start to feel better soon.

Xrayalli · March 2014

I think I will touch base with my surgeons office this week and get a plan in place, this is awful! Even though it's probably normal there must be something else I can do for pain relief....I have been exercising my arm, I feel range of motion is pretty good. But maybe the swelling can be relieved with a drainage. Thanks Running

Xrayalli · April 2014

So happy to report that aside from minimal numbness under my arm everything is back to normal! I don't even have any swelling, what a relief to be out of that. That was a lot of pain to go through. I will never forget it.

Anonymous · April 2014

That's great Alli! I had to go through about 8 sessions of Physical Therapy, but I am virtually pain-free now too! That ALND was much wirse than the mastectomy!

Xrayalli · April 2014

I agree, ALND was worse than mastectomy for sure. I have noticed my left arm (surgery side) I am not able to fully extend it without a little painful tug on inside elbow. I wonder of this is "cording". I just keep stretching it, hoping it will resolve.

Anonymous · April 2014

Yes, that is probably cording! I'd recommend that you get a referral to a PT who has experience with women who have had breast cancer! The first two weeks, my PT basically massaged my arm to get rid of the cording! It made such a difference!!!

bc101 · May 2014

Hi all,

I had ALND surgery during my BMX and am still having pain 3 months later. I have the feeling that there's a "bunch of stuff" in my armpit. It has always felt swollen near the TE on that side ever since the surgery. On one side of my ALND incision, my RN said it feels like scar tissue. I have pain like a very slight pinching feeling in the armpit, and pain when I touch or try to massage the area. Also have shoulder pain that my PT thought might be a rotator cuff issue. It didn't start out this way. I was doing really well after surgery, but somewhere along the way the shoulder pain started. I've been to 2 PTs and am doing stretching and exercises every day, but am just wondering will this ever go away??? I still don't have really good ROM. I can't fully extend my arm out to the side for things like reaching in the backseat of the car, and I sometimes struggle to get into long sleeves and coats. I wake up with the shoulder pain in the morning.

I called my MO's nurse about the shoulder pain and she said to go to an orthopedic specialist. I do NOT want to have xrays or surgery done, so I will not go there! Anyone have a similar experience?

Xrayalli · May 2014

Bc101-continue seeing the PT and doing exercises. I should practice what I preach, though, I gave yet to see a PT for my above mentioned issue that I continue to have. I cannot extend my arm at a drive through window and things to my side. I don't have he "bunch" in my armpit that you have. An ortho may not order X-rays because if the problem is not suspected to be bone related there's not much yo see. And you can just tell them you'd like to forgo any X-ray, a good ortho can diagnose a lot without X-ray

bc101 · May 2014

Thanks for the advice Alli. The bunch of stuff is actually more around my incision below my armpit. I didn't describe that very well last night! It's probably scar tissue. I'm calling my PT today to set up more appts. I had canceled some appts. with her because I thought she was too aggressive, but I don't know who else to go to and my other PT is too far away. And maybe I'll ask my PCP about a referral to the ortho guy.

mgcf · May 2014

I posted a similar question on another thread before I came across this discussion. Like annabananas, it was recommended that I have an axillary lymph node dissection because the breast tumour was large (5 cm) and a lymph node was palpable. I'm having neo-adjuvant treatment and lymph nodes were not biopsied before chemo so we don't know for sure how many - if any - had cancer. I sought a second opinion and the surgeon suggested performing an SNB at the time of my lumpectomy; if a quick section shows nodes are negative, no ALND, but even one positive node buys me a ticket to ALND. Like most, worried about the long term side effects.

Interested in learning if anyone had chemo first and how lymph nodes were managed in this situation? Would also love to hear how you're doing post ALND and length of recovery.

bc101 · May 2014

Hi MGCF - I had neoadjuvant therapy, not with chemo, but with anit-hormonal therapy. A micromet was found on the one sentinel node taken during my lumpectomy. They were not going to do an ALND regardless of that one node. They said studies have shown that women do no better if you take more nodes when sentinel nodes are positive. My margins were not clear and I had to have a re-excision, which had a positive margin. My BS offered to try again, but I opted for a BMX and changed providers. My new BS did a ALND and found no further nodal involvement.

I'm almost 4 months out from surgery. I still have some numbness and tenderness in and around my armpit, and the feeling in my upper arm is coming back. But about a month ago, I started having problems with increased pain and limited motion in my shoulder on the affected side. One PT thought I might have a rotator cuff injury and another thinks it's impingement. So I'm scheduled for about 5 or 6 sessions of PT. Don't know why I'm having this problem, but I they tell me it's "normal" after breast surgery. Hope this helps...

thinkpink4ever · May 2014

I was initially diagnosed with DCIS in 2001, but the path report after my 2001 lumpectomy showed that the cancer had invaded the breast tissue, so one week later, I had to have re-ex of margins and a SNB. Both the margins and the two sentinel nodes were clear. I cried tears of joy!!

Fast forward to last week - mammo and ultrasound shows a small tumor less than 1 cm; however, after the biopsy, this recent diagnosis of IDC has bought me a ticket to ALNB and a MX of the right breast, sooooo I'm opting for BMX and DIEP recon in one surgery, hopefully in early June.

I should get my contrast MRI results on Tuesday from my BS. Praying that all looks well, and we can get this surgery on the calendar. He didn't anticipate pre-op chemo or anything...

I'm leaning on my Heavenly Father, and praying for us all!

One love,

tp4ever

Anonymous · May 2014

MGCF! I had chemo prior to ALND..because my oncologist changed his mind about ALND after MX and Chemo. So... we will never know if my nodes were clear before cancer or if chemo took care of any cancer in the nodes! I actually found the ALND to be the worst part of my cancer treatment, but I'm glad I had it done! I would have always worried! I had about 8 sessions of PT which made a huge difference! I have full range of motion but some lingering soreness in my arm! Good luck! Let us know what you decide to do!

mgcf · May 2014

bc101, tp4ever, runningfromcancer - thank you for sharing your stories and perspective, very helpful!

Leaning towards doing the SNB first, and hopefully we'll be able to determine if cancer was in the nodes at some point. If not, may proceed to ALND. Afterall, we can always take out more, but can't put anything back once its gone.

Axillary Lymph Node Dissection

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