Clear axiliary lymph nodes removal in hindsight

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florida_jo
florida_jo Member Posts: 15
edited February 2017 in Waiting for Test Results

What prompted me to write about my lymphedema is an article I just read in Baptist Health magazine called "Resource" where onco surgeon Dr. John Diaz expressed his opinion regarding nodes removal and I quote "Our research shows when we can isolate the sentinel lymph node and test it, leaving the other nodes intact, we can help patients avoid longer operations, bleeding and lymphedema, or swelling resulting from fluid backup."

I only had 3 sentinel nodes removed, all clear, still have lymphedema. Suffice it to say, I was not ready for this post-surgery problem and dealing with it on daily basis. So many women have more severe cases of it, I probably should feel lucky, but here I am venting.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    Florida-Jo: I'm not sure how many nodes you're talking about. Most surgeons do the dye to find the sentinel nodes. Then they take just a couple to biopsy - mine took two. Until they are removed and biopsied, there is no way to know if they are involved or B-9 or not. Yes, you can have problems with LE with only a SNB, but the risks are considerably less than with node dissection surgery.

    It sounds like you are saying your doc took a bunch of nodes w/o a diagnosis of cancer. Is that correct? I'm sorry you're dealing with LE. Since this is your first post, you may not be aware of the following site which you may find helpful - link below. it was written in conjunction with some of our own BCO members. There is also a section within BCO on Lymphedema with lots of threads you may want to visit.

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


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  • florida_jo
    florida_jo Member Posts: 15
    edited January 2017

    MinusTwo: Thank you for your reply and posting the LE website, I have been there after the fact (when lymphedema showed up). 3 nodes are gone(MRI showed them clear), but enough to cause rest of my life problems to deal with on daily basis. My regret is that I did not postpone this procedure and maybe avoid having it ever. I have also read somewhere in medical journals the stats of removing vs not removing lymph nodes for reoccurrence rate are similar. I wish I could remember where I read it. I wish I had a better info and more time to ponder before making my decision. Not removing nodes at the time of mastectomy should be an informed choice, I hope you agree. I have made an uninformed choice, hence my regret.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2017

    florida - yes, it is such a whirlwind, rush when we are first diagnosed. Everything is new, we don't know what they are really talking about and we are all frightened. I'm sorry you ended up with LE.


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  • debiann
    debiann Member Posts: 1,200
    edited January 2017

    I had only two nodes removed and I have mild LE. What made it worse was that when the symptoms began, my BS brushed it off. I had to get a referral from my GP. My therpist says le can happen even if no nodes are removed.

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  • ThisIsMe4Now
    ThisIsMe4Now Member Posts: 12
    edited January 2017

    Florida jo- I'm sorry you were not given enough time to process and make an informed decision on your node removal. As someone mentioned, the dye is injected to highlight the sentinal node and generally an additional few are removed. I had 5 nodes removed in the initial SNB during my BMX and ended having a complete axillary lymph node dissection surgery later when evidence showed the cancer spread... a total of 24 nodes removed. I also had an MRI that showed clear nodes but as my onc said, the most effective way to see cancer is under a microscope. I'm thankful I have yet to experience LE and my heart goes out to you.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2017

    Since it seems that your post is intended to forewarn someone newly diagnosed, I just wanted to hopefully clarify a few of your points. What you had was a Sentinel Node Biopsy (SNB)accompanying your surgery. Surgeons aim for removal of the smallest number of nodes in a SNB procedure, but they will remove either all that take up dye or tracer, or remove a fat pad and there may be more than one node present, or nodes can be clumped together or attached. Any of those reasons may be why you had three nodes removed, and this is very common. The only opportunity to do this biopsy if one is having a mastectomy, is during the surgery. Once the breast tissue has been removed you no longer have tissue for the dye and/or tracer to travel through to reach the node(s) closest to the tumor to identify the sentinel(s). You will find that virtually all of us with invasive breast cancer have a SNB procedure done with mastectomy, regardless of whether any imaging, such as MRI, is done prior to surgery. Some of us only have one node removed, some have a few more. Imaging prior to surgery is not foolproof and has size thresholds, and there is no way to know if a small amount of cancer is present in the lymph nodes by imaging alone. To remove nodes after a mastectomy, with no opportunity to identify sentinel(s) means that all nodes may be potentially removed in ALND surgery, increasing the chance for lymphedema to occur. Statistically, you were unfortunate to have lymphedema occur with just SNB nodes removed. The number of people that this happens to is relatively small, but it is life altering nonetheless, and I am sympathetic. I had SNB on my prophylactic side, two nodes removed, and have lymphedema. I had a positive SNB, although not detected in the OR, so declared clear at the time of surgery. I had a later ALND with 11 more nodes removed and also have lymphedema in that arm. The procedure the surgeon is describing in the article you mentioned is the same procedure you had done - sentinel node testing doesn't occur with the node(s) left in place, they are removed, tested in the operating room, then tested further in the lab.

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  • Beesie
    Beesie Member Posts: 12,240
    edited January 2017

    SpecialK, excellent clarification.

    florida jo, I am sorry that you are dealing with lymphedema. However as SpecialK explains, it is important to point out for others reading this that the procedure that you had is exactly the procedure that Dr. Diaz was referring to in the article you reference (I just found and read the article).

    Unfortunately the article you read included just that that one quote from him, along with a very abbreviated and incomplete explanation of an SNB procedure, and did not go on to further explain, as SpecialK has, that a SNB often leads to the removal of more than one node. This is not because the surgeon is choosing to unnecessarily remove more nodes or is doing a more extensive nodal procedure, but is because the dye has highlighted more than one node. For an SNB to be an accurate predictor of nodal involvement, any nodes that are highlighted by the dye must be surgically removed and analysed under a microscope to determine if any cancer cells are present. The theory of the SNB is that the dye that is injected into the breast will follow the same path to the nodes as any cancer cells that may have moved into the nodes. So if the dye moves immediately into 2 or 3 nodes, then these are the nodes that are most likely to be invaded by cancer cells (if any cancer cells did travel to the nodes). And when the dye identifies more than one sentinel node, it is very possible that cancer cells might be found in the 2nd or 3rd node and not the 1st - this is why the surgeon must remove all nodes highlighted by the dye.

    These articles explain the SNB procedure, including the fact that there might be more than 1 sentinel node that will be removed:

    Sentinel Lymph Node Biopsy for Early-Stage Breast Cancer http://www.cancer.net/research-and-advocacy/asco-c...

    Sentinel Lymph Node Biopsy https://www.cancer.gov/about-cancer/diagnosis-stag... Note the visual example of a breast cancer SNB shows 2 sentinel nodes being removed.

    As for doing an SNB as a separate surgery...nodal involvement is possible for all patients who have invasive cancer, and nodal involvement most often is not large enough to be detected by screening. Accurate staging and the development of an appropriate treatment plan cannot be done without knowing nodal status, so if the patient is known (from a biospy) to have invasive cancer, the SNB might as well be done at the time of the breast cancer surgery, rather than planned for a second surgery. For patients with DCIS (a pre-invasive cancer), an SNB is not necessary when having a lumpectomy, and can be done later as a second surgery should invasive cancer be found during a lumpectomy. However for those with DCIS who are having a MX, because the surgery removes the breast and removes/jumbles the lymphatic pathways, normally an SNB will be done at the time of the MX just in case some invasive cancer is found during the surgery, because an accurate SNB might be impossible to do after the MX, once the breast is removed.

    Edited to add: florida jo, the study you read about recurrence rates being the same whether or not nodes were removed was referring to auxiliary nodal dissections (removing all the 1st and 2nd level nodes - possibly 20 nodes or more) following a positive SNB. It was not questioning the need for an SNB at the time of the initial surgery to determine nodal involvement, staging and treatment plans. This might not be the specific study - there have been several similar studies over recent years, but here is one example: https://www.ncbi.nlm.nih.gov/pubmed/25081336 There have been no studies done on passing on an SNB at the time of surgery for those diagnosed with invasive cancer. That would likely be considered malpractice on the part of any doctor who suggested it.

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  • florida_jo
    florida_jo Member Posts: 15
    edited February 2017

    SpecialK and Bessie, thank you so much for both your clarifications. I now understand better and agree on the sentinel nodes being removed during mastectomy and the logical dye tracing that can only happen during mastectomy. I also re-read the article and am now completely with you. I will be editing out my post accordingly since it gives women wrong impression. Dr. Diaz talks about avoiding lymphedema when removing only sentinel nodes, not true in my case.


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2017

    florida_jo - so glad to help, and agree it is useful to edit your post, but don't delete it. There may be others who come to this site with the same concerns you had and it is important that they find good info. I think the point Dr. Diaz is making is that the lymphedema rate is quite a bit lower with the advent of SNB over ALND, which used to be standard of care. It is indeed unfortunate that there are some of us who end up with lymphedema even with a SNB, and that possibility should not be downplayed. I have fewer total nodes than the average person, so removal of levels 1 & 2 in my cancer side and just the SNB in the other side left me with bi-lateral lymphedema. I should probably have seen the writing on the wall, my hands always swelled with exercise, walking, or salty food - even sleeping. My feet and ankles swelled with airline flights, lots of walking, and particularly with vein issues after hysterectomy, so LE is not a big surprise for me.

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