Axillary Lymph Node Dissection

thinkpink4ever

MGCF, you seem as if truly exploring all of your options and making sure that you are informed.  And you're so right, you can not go in reverse and put anything back.  I pray that you get good results from the SNB, and can stop there.  I didn't have any issues as a result of my SNB, but I don't know what to expect from this upcoming ALND.  I'm just going to give it to God.  Praying for all of us,

One love

tp4ever

Xrayalli

MGCF-my sentinel node biopsy came back with one positive node with 2 lesions, one was macromets. I was afraid that I had more positive nodes so went ahead with the ALND and had no more positive. I do not regret my decision, I think it's important to know how many nodes are affected. Had my one node been micromets I may have not done the ALND, though, the macro part was concerning to my MO and BS. 

mgcf

Xrayalli: Agree with you that it's important to know how many nodes are affected. The complicating factor for me is that I had neoadjuvant chemo without fully assessing the nodes (one appeared enhanced on imaging and palpation).  But now, we won't know if the nodes are clear because of chemo or if they were always clear. 

Based on your signature, it looks like you had SNB before chemo, is that correct?

Do you by chance know....if SNB post chemo can determine if nodes were previously positive?  Also, if nodes are negative post chemo, is that as good as if they were always negative?  (I will probably have radiation to the axilla).  This is the crux of my dilemma over whether SNB is sufficient or if ALND is the more prudent route.

Xrayalli

I had SNB prior to chemo. Oh gosh, I am not sure on your first question about previously positive nodes but if nodes are negative after chemo I would definitely take that as a good sign, your chemo is treating your nodes as well as your whole body and any rampant cells there, too. I have to assume any rampant cells that may have slipped through my one node are being killed by my chemo. That's a good question, if you have cancer cells in your nodes and chemo kills them will pathology know that? I believe in the SNB, honestly, if you have negative sentinel nodes then you're probably safe from more node removal. 

mgcf

Xrayalli:  Thank you for sharing your perspective.  I'm thinking along the same lines as you.  Despite neo-adjuvant, my surgeon suggested as an afterthought to do SNB first, and proceed to ALND only if SNB is positive. All these different treatment choices makes treatment almost as stressful as the diagnosis! 

laurie2025

I had an ALND, and developed terrible cording afterward.  30 sessions of PT has not cured it.  It had to be done, and it is how my cancer was initially discovered, but I wouldn't wish this awful cording on anyone.

DontdoALND

I was talked into having an ALND after having a mastectomy with a sentinel node biopsy.  I had one positive node at the first surgery then went thru 16 rounds of chemo.  The Vanderbilt Tumor Board voted to do the ALND because it was the standard of care.  They didn't explain the risks to me when I asked.  I was already back at work and was hesitant to do the surgery.  I agreed and I haven't been able to work since.  The nodes were all clear.  I have extreme nerve pain in my arm, armpit, chest and shoulder.  I have had lots of physical therapy.  It's been 8 months with no relief.  I've tried all the drugs they give you for nerve pain and narcotics which I hate.  There is usually no reason to do this.  Please be careful and avoid ALND if possible.  It could ruin your life.

DontdoALND

Doctors need to understand that we want to not only survive the breast cancer but to also have quality of life.  Often they don't explain the risks involved even when asked.  I wasn't allowed to make an informed decision about my body.  Besides the extreme pain, I have two fingers that don't work the same as they used to.  Be very careful and take your time to do research.  Don't let anyone rush you or scare you into surgery.  My advice is to only do the sentinel node biopsy. 

sandj

I had ALND when I had my mastectomy. The recovery was very difficult, I did lots of physical therapy. My surgery was at MDA and they gave me lyrica immediately before my surgery and then I continued it for 10 days post op. I do not have any nerve pain from the procedure and I think lyrica helped with this. My surgeon said his reasoning for the ALND was that I was young and that he had seen recurrences in the LN when this was not done.

Xrayalli

Following my ALND  I was in the most pain out of all my surgeries. I had severe sensitivity, nobody could touch my arm, I wore tank tops so fabrics couldn't touch. My pinky and lateral hand was numb and tingly. About 4 weeks out this all resolved. I still have under arm numbness but it is tolerable. I am able to work, I do mammograms for a living  and I run the radiology department. I agree with above posts that you NEED to get all the information possible and make the right decision for yourself. I did what I did for peace of mind, taking a risk but because I already had a cancer mets to my lymph node I HAD to know how much mets we are dealing with.

Best of luck, I've said before this decision was, by far, THE hardest decision to make when I found out the risks involved. 

Bren58

I had ALND surgery 13 months ago and started PT 6 weeks after for cording. I got all my ROM back, but it was still very sore and I had a lot of nerve issues. I was finally sent to a specialist who ordered a pain cream from DermaTran. It can be compounded with all kinds of pain and nerve blocking drugs. I didn't want to take any more drugs, so this was great because it goes right on the  skin instead of through your whole body. I think I used that stuff for about 4 months and it was very helpful. 

I agree with the rest of you, making the decision to have this surgery was the hardest! I had 3 nodes that showed up on the initial PET. I had neo adjuvent chemo and I wish I would have pushed for a PET scan after chemo. I had 29 nodes removed and all were clear! Even though I am doing pretty well now, I have permanent numbness and can no longer do all the things I would like to do because I have a lifetime risk of LE. I did the surgery because all my docs said it was necessary and my family wanted me to have it done too. Knowing what I know now, I am not so sure I would have agreed to it. But I can't play the "woulda, coulda, shoulda" game, what's done is done and I can't change it.

DontdoALND

I am still in pain 8 months after ALND surgery.  It's excruciating.  I've done physical therapy, creams, etc.  nothing seems to help.  I recently discovered that I have surgical clips under my arm.  I don't know if that has anything to do with my pain or not.  So far doctors have not been any help.  Has anyone been in this situation and how did you get relief?  There has to be a neurosurgeon or someone that can help women in pain.  I hope someone can help.  

Thanks,

DontdoALND

just bumping my previous note since no one has responded

ruthbru

Can you get the clips out? They could be causing continued irritation and pain.

Xrayalli

So sorry you are still in so much pain. I have heard people have cording from their surgery and this causes a lot of pain, have you had that checked? Physical therapy and massage can help. I have been lucky but it has been a long road. My numbness is getting better and I don't have any pain anymore. Best of luck to you!

Hopeful82014

Just wanted to thank you for your comment, Ali. I'm glad to know I'm not the only one struggling with that issue. I KNOW I have one positive node - it's biopsy proven but I was still very concerned about LE and cording. 

I met with a second surgeon today and she went into the risks of not taking out the nodes (somewhere between 6-12 of them) in  much greater detail than her colleague had. She also really seemed to 'get' my concern about LE as well as cording and provided a lot of info and insight (and confidence) that both my husband and I found helpful. Taking a deep breath - 'cause I'm nervous about surgery! I've scheduled for next month. 

Wish me luck!

A03

Hope you are doing as well post-op as I. Had 24 nodes removed, all positive for cancer, five weeks ago.

I am 72 and, while otherwise healthy, not in particularly "good shape." So far, so good. Little enough pain that not even an aspirin needed. Still numb in a couple of places, sensitive, but that's it. Best advice I got was from an onc friend who said make sure surgeon does at least 100 breast jobs a year -that experience is everything!

Bippy625

hi all, I have an axillary node positive from my biopsy, and am having BMX and reconstruction in December. Having rads too.

So it is in one node for sure. I am having chemo now and it is shrinking all of it.No one has mentioned an ALD to me....from reading this board, I do not want that! So since it was already positive, what will they do? I will meet my PS tomorrow, and I guess consult with breast surgeon prior to surgery. How does this differ from sentinel node procedure?

Any help is appreciated, want to know how best to make decision.

Anonymous

Hi Bippy,

How did they find out that the node was cancerous? Was it one of the sentinel nodes that were taken out?

I would think you would want to have any cancerous node removed, especially with Her2+ status.

For what it is worth, I am now 11 months from my ALND surgery. I have no more pain or cording and have not developed lymphadema!

Good luck with decision-making. What did your PS and BS recommend?

Bippy625

hi all, I have more info. The biopsy I had was just a core needle biopsy, bit they did take it from an axillary node and it was cancer. So BS said he will do a SND first, then only take the nodes absolutely necessary in his opinion. I know I am facing losing some. I feel better knowing this.

My surgery is in about 3 weeks. I am anxious to get it done!

Xrayalli

hopefully your SNB will come back with no positive nodes and that will be it

Bippy625

hope so too......I get it done on 12/17! Thanks all for input and advice.

Hopeful82014

I'll keep my fingers crossed for you, Bippy.

I am in the same boat. The node seems to be responding to neoadjuvant Femara, which is a good sign.

Bippy625

Hi all,

Not sure yet what I had done on nodes, except BS says there was lots of scar tissue and I was a hurtin pup for a few days!

I see him day after christmas, so will get path then.

Hopeful82014

Hoping for good news for you on the 26th, Bippy.

Bippy625

Just learned I had 13 nodes removed, all were cancer free!!! Also the breast tissue was cancer free.

Still sore, but should have my staples and drains out friday!!!!!!

mgcf

I had a major SNB vs ALND dilemma back in May and thought I'd post an update. I ended up having 5 nodes removed (all tested negative for BC post chemo) + radiation. Took a while to recover, but my arm feels normal now - no problems.

I based my decision on a second opinion I received from a major cancer center, as well as the results of the Z2011 study - landmark study which showed that SNB is not inferior to ALND in cases where there is limited node involvement.

Posting a couple of links to the study, and hope it helps future sisters facing a similar dilemma make the best decision for them.

http://www.ncbi.nlm.nih.gov/pubmed/21304082

http://www.cancer.gov/cancertopics/factsheet/detec...

Robinmich9

On December 19, I had a bilateral mastectomy and 16 lymph nodes removed - 3 had cancer. The issues from the lymph nodes is worst than the mastectomy. I have numbness in the top half of my arm, my elbow feels like I was whacked in the bone with a bat, under my arm feels like I have a real tight rubber band or rope tied tightly. I will probably need PT. It is really frustrating. I am supposed to go back to work next week but I haven't been off the couch in over two weeks. I also start chemo next Thursday so I am hoping to be strong for that.

I wish you all the best and a speedy and complete recovery!

Robin

Hopeful82014

Bippy, so glad to hear of your good news! That's terrific. Hope you're feeling pretty good by now.

mgcf - thanks for the links and update on your experience. I'm following the issue carefully and hoping to avoid ALND myself.

new2thisjp

hi everyone wow im new to this site but decided to join for some comfort so to speak just to hear others experience can put a little comfort or what to anticipate, im 44yrs old Dx with DCIS nov.17th 2014, stage 0-1 grade3 with micro invasion ER + PR +Her2- had my rt mastectomy dec 23rd with 3nodes tested 1positive with 2mm invasion now they are considering if i might need chemo like really im freaking out guys help