Topic: Level 3 nodes?

Faith, It sounds like you've been through a really rough time. I have lymphedema, and only had 3 level one nodes removed: what the studies are showing is that the number of nodes removed is a major risk factor, but some women (like me) have poorly functioning lymphatic systems to start with, and it doesn't take much to tip us over the edge.

It sounds like you got two very different opinions. Are you going to get a third? If taking the level three nodes doesn't improve your outcome, and it definitely would put you at a higher risk for lymphedema, it makes me wonder why they would do it?

Does your medical oncologist have an opinion?

I do work in medicine, and oncology, and I'm amazed at women I see who have had radiation to all the nodes, along with ALND, and are doing really well. There are some who get lymphedema, but there are some who do not.

So, I'm an IDC, with a few level 1 nodes removed and some in my radiation field (although it was whole breast, not nodes)  and have LE, but I hope more women come along with their experiences

Kira 

I did have radiation to the whole breast, axillary area and supraclavical area also.  The crazy thing is, despite having had AC and Taxol and still being on Herceptin at the time of my radiation, during my radiation is when the first signs of my IBC started showing.  My radiation oncologist is amazed that anything could survive or worse yet start with the high dose of radiation he gave me.  I cannot have radiation again as I have already had the maximum dose. 

Thanks to both of your for your replies.  Hoping there are others who will also chime in.

Faith, if you've already had maximum dose radiation to the level three nodes, is the goal of removal to control things locally? 

Just guessing here, but if you've already had them irradiated and have no lymphedema, you must have a very well functioning lymphatic system.

My lymphedema therapist talks about people who have an extra large collector vessel that runs over the shoulder blade and really protects from lymphedema.

Still, seeing a good lymphedema therapist might help give you some baseline measurements and plans for avoiding it.

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Hoping more women chime in.

Kira 

Hi Faith,

So sorry to hear you have to go through another diagnosis and so soon after the first.  I want to mention up front that my knowledge and research of Inflammatory Breast Cancer (IBC) is almost non-existent, so it is very possible there are specific characteristics of IBC that dictate different staging criteria and treatment strategies.

I will give you my perspective on removing nodes since I have had two very different situations that I felt did not call for the same response in each case.  My belief is that the PRIMARY reason for removing lymph nodes is to determine whether the cancer has spread outside the local breast region, which allows for more accurate staging and treatment decisions. It is not necessary to remove level 3 nodes for staging purposes.

Another reason for removing nodes which may be a little more controversial is when there is obvious and extensive tumor growth in the axillary or supraclavicular node region but not elsewhere in the body, as shown by PET/CT or MRI scans.  It used to be considered that once the cancer left the breast area and moved particularly to supraclavicular nodes or liver, lungs, bones etc that the treatment regimen switched to "management"  strategy vs "cure". 

A more recent approach has been to not automatically stage positive supraclavicular nodes as being Stage 4, but rather Stage 3C which only means that the treatment strategy is still looking for possible cure vs management only.  I believe there have also been recent studies showing that even in the case of Stage 4 mets to liver, bone, lung....if the mets is small and single foci, there is more emphasis today towards treating the actual mets with radioablation, laser surgery and attemping removal of the tumors vs treating only medically with chemo or hormonals.

My philosophy has always been that if surgical removal of the tumor site has any significance at all in the outcomes, then why would you leave easily accessible known areas of tumor just because they are outside the breast, especially since we know that chemo, radiation and hormonals are not 100% effective at destroying cancer cells?

I do NOT believe, however, that total axillary dissection is warranted in the case of sentinel node biopsy where only 1 or 2 nodes are found to be positive out of several "clean" nodes or where later pathology reports show micrometastasis to 1 or 2 nodes. Those involved nodes were already removed by the SNB and the presence of additional positive nodes while possible, seems less likely. The risk of LE seems to carry more weight in this situation to me.

My first BC was Stage 2 IDC.  I was initially told I was node negative after my SNB, however, later histocytology showed micromets to 2 nodes.  My surgeon wanted to take me back for full axillary dissection but I refused.  In that case the primary purpose of staging was accomplished, I knew I would have chemo and radiation due to the micromets but did not want to risk LE with further removal of nodes most likely to be healthy.  CT scans did not show any signs of cancer spread outside my breast, so we did not remove any more nodes as a "preventative" measure.

My second BC 5 years later turned out to be a very different situation, with obvious "hot spots" in the breast and axillary region showing up on both PET/CT and MRI scans prior to my surgery decision.  This second cancer was Invasive Lobular and in the opposite breast, so it was not a recurrence of the first cancer, but a brand new primary. While I knew the likelihood of having positive axillary nodes was very high, I still requested the SNB procedure along with my bilateral mastectomy,  just in the hopes that the scans were wrong.  My surgeon knew however, that I wanted any obvious tumor sites removed if it was surgically reasonable to do so.

As it turned out, my surgeon did have to remove every node she came across and even had to remove level 3 nodes because of their obvious involvement.  I had 23 nodes total removed and all 23 were positive for cancer.  One node was over 2.5 cm in size and I also had extranodal extension which means the nodes had ruptured their contents into the axillary area.

Waking up from surgery and being told I had 23 out of 23 nodes positive, was not what I was hoping to hear, obviously.  BUT I am very glad that my surgeon opted to remove what I consider now to be 23 individual tumor sites from my body.  Less cancer present for chemo and radiation to deal with seems like a good thing to me.  

So to answer your question regarding level 3 nodes being removed, yes I do think there are scenarios when it DOES make a difference and is warranted.  I did develop LE in my left arm less than 2 months after surgery while I was undergoing chemo.  My LE is under control and I have learned to adjust my life accordingly, BUT the exciting thing is that next month will be my 4 year anniversary of my Stage 3C diagnosis and so far every scan shows I remain NED!  Would I still be here saying the same thing if I had not had such extensive axillary dissection? I have my doubts. 

Bottomline, I think we have to make treating the cancer the priority.  I am more than willing to live the rest of my life with LE as long as I am LIVING! 

Faith, your situation as you have stated is so unique and "rare" that I really cannot comment to your specific circumstances.  I am very glad to hear that your PET/CT scans are clear which is wonderful news!  I fully understand the caution from your docs that the scans cannot pick up very small growths, but like you, I choose to take good news in any form it shows up.

It sounds like you are getting excellent medical advice and have some top notch people looking out for you. Please let us know how things go for you.

Wishing you the best,

Linda

Linda:  Thanks for sharing your experience.  I find myself in a similar quandary as you were with your first cancer.  My path shows that 1 of 4 SNB nodes is positive for micromets. Surgeon recommends full axillary dissection (level 1 and 2) as that is standard of care. But even if those are removed and show more cancer, I am still harbouring the risk that cancer is in Level 3 nodes or, more seriously, floating around my body.  As Grade 3 and Trip Neg, I know aggressive chemo is my systemic treatment (so I don't need node surgery for treatment decisions) and maybe rads to axillary (as well as breast) would be a good local control. ??

I understand a clinical trial is underway to evaluate rads vs. ALND, but sadly there seem to be no results yet.  Are you aware of any research on the subject?  What did you consider in your decision?  (I am concerned about side effects of ALND - nerve damage and LE - I'm active and like to ski, for example - plus my recovery from the SNB seems to have been chllenging enough, though no LE at this point, touch wood.  I'm also, worried about the delay until start of chemo.   

Congratulations on your 4 year anniversary! That is a great milestone!