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Topic: Stupid question re. lymph nodes

Forum: Not Diagnosed but Worried — Meet others worried about developing breast cancer for the first time.

Posted on: Mar 16, 2013 12:03AM

vhlavaty wrote:

I have, what is probably a stupid question: from those of you who've 'been there - done that'...just how serious is it if breast cancer has spread to your lymph nodes? I've done some research online and I know that lymph node involvement is an indicator as to 1) whether the cancer has spread to other areas of the body, and 2) the likeliness that cancer will return. But what I'd like is an honest to goodness idea of how scared I should be if this has happened to me? I've had an ultrasound & mammogram, and my GP & radiologist said all signs point to cancer (I have a 4.5 cm lymph node in my left armpit & a 1.9 cm mass in my left breast). My surgeon will be performing a lumpectomy and axillary lymph node dissection next week. I've received a few private messages asking why the surgeon is going straight for an ALND versus a sentinel node biopsy, and I don't have an answer to that question. Could it be because I already have nodes that are effected by whatever is going on inside my body? Or could it be that he is already assuming the worst?

I know I can call my surgeon to ask these questions, and I will before my surgery next week...but like I said...I'm kinda wanting to know from people's personal experience whether this is a bad sign?

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Posts 1 - 13 (13 total)

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Mar 16, 2013 12:27AM gillyone wrote:

There are many of us around that had many nodes involved. If you have no nodes involved, those people think, great, it hasn't got to my nodes. But if you have node involvement, you think, great, my nodes caught it before it went any further.
Bottom line is, it's a crap shoot. Do the treatment and give it your best shot. That's all we can do. Most of us are fine!!

Dx 6/5/2009, IDC, 3cm, Stage IIIc, Grade 3, 9/15 nodes, ER-/PR-, HER2-
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Mar 16, 2013 12:41AM vhlavaty wrote:

gillyone,

Thanks for the feedback. I'm much more willing to trust the "it's a crap shoot" notion from someone who has experience. I worried that my surgeon gave that same sort of line merely in an effort to calm my nerves before surgery...rather than a fully honest response.

Thanks again!

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Mar 16, 2013 08:38AM Beesie wrote:

I wonder if the surgeon is doing an axillary dissection along with your biopsy because either he or the hospital does not have the capability of doing an SNB.  The hospital that I was initially going to be treated at was planning to do an ALND on me because they didn't do SNBs at that facility.  (This was in the days before SNBs were commonplace). That was enough for me to change hospitals.

I didn't have a chance to reply to your previous answer to me in your other thread, but you said:

"I saw the surgeon the following Monday where he shared the radiologist's report. It read, " results highly suggestive of malignancy...given the mammographic appearance this is likely an invasive lobular carcinoma." The surgeon is doing a lumpectomy and an axillary lymph node dissection. He assured me he would not be removing more than a few lymph nodes, and that occasionally they can have pathology done right there, but typically it takes a few days. Does that make sense?"

Honestly, the answer is "No".  "Only removing a few nodes" is the definition of an SNB. If the surgeon is only removing a few nodes without the benefit of doing the full SNB process (i.e. the injections of the dye and/or isotopes), then there is a risk that he may not get the right nodes.  An SNB is a very precise and specific operation and the dye or isotopes is a critical part of the process.  Without doing the injection, the full first level of nodes, and usually some of the second level, should be removed.  That's a lot more nodes.  And that's an ALND.

Doing an ALND and not an SNB for any surgery these days, and particularly for a biopsy when cancer hasn't yet been diagnosed, does not make sense.  It sounds as though it is highly likely that you will be diagnosed - your image probably is a BIRADs 5 with about a 95% chance of finding cancer. But going into a biopsy, there is always a possibility, maybe just a small one, that cancer won't be found.  I've seen a lot of women over the years on this board who've had doctors who were absolutely certain that they had breast cancer, but it turned out that they didn't. 

Of course the more likely scenario, given what your surgeon has said, is that you will be diagnosed.  But there is no way to know if the cancer is in your nodes, and even if it is, that still doesn't mean that an ALND will be necessary.  An ALND is no longer a standard procedure when nodes are found to be positive; the decision on whether to do an ALDN is now part of the overall treatment plan decision that's made once the preliminary diagnosis is in.  If chemo is necessary, and particularly if rads will be also be given to the nodes, then an ALND is often not done.

So unfortunately, no, what your surgeon is telling you doesn't not seem to make sense.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 16, 2013 08:43AM Lily55 wrote:

I was BIRADS 5 with visible lump in armpit - surgeon went straight to ANC for me and found 7 out of 14 nodes affected.  I don´t get hung up on being node positive as many node negative people go on to develop further cancer and many node positive people don´t..!!!! 

The hardest thing about this is that it is SO variable and even the best Oncologist is really only using an accumulation of his knowledge so far to make a best guess for anyone´s treatment as we are all individual

Dx 4/2012, ILC, 5cm, Stage IIIa, Grade 2, 7/14 nodes, ER+/PR+, HER2-Surgery 05/03/2012 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Radiation Therapy 08/15/2012 ExternalHormonal Therapy 07/20/2013 Aromasin
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Mar 16, 2013 09:03AM fredntan wrote:

have you had MRI yet?  shouldn't she have one before they go cutting. IDK I'm not a doctor. My doctors after my first bx thought I was stage 1 or 2, didn't feel any lymph node . a mri was ordered at that point. you havn't had biopsy yet

I'm sorry I've been of no help to you. Iknow MRI's have a lot of false positives. mine showed 4 things. 1 of which was a false positive. hoqw come they are going straight to lumpectomy before bx?

Fran

Dx 8/3/2011, IDC, 2cm, Stage IIIa, Grade 2, 13/17 nodes, ER+/PR+, HER2-Dx 10/2013, Stage IV, metsHormonal Therapy TamoxifenSurgery 09/09/2011 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 10/20/2011 Adriamycin, Cytoxan, TaxolRadiation Therapy 03/29/2012 ExternalSurgery 10/08/2012 Reconstruction: DIEP flap (Both)Surgery 04/03/2013 Reconstruction: Nipple reconstruction (Both)Chemotherapy 10/23/2013 fluorouracil, MitomycinChemotherapy 11/20/2013 Abraxane, fluorouracil
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Mar 16, 2013 03:55PM, edited Mar 16, 2013 05:57PM by Outfield

vhlavaty,

There's a lot of truth in what Beesie wrote, but I'm going to disagree a little.  

What you know now is that you have a very, very suspicious mass, and at least one highly abnormal lymph node.  

The studies in which limiting node dissections to just a sentinal node removal even if the pathology was positive didn't change survival were looking at microscopic disease.  That means the node looks normal when the surgeon takes it out, but when the pathologist examines it under the microscope there is cancer visible.  ALND is still the standard of care if a node(s) is "grossly" (meaning you can see that it is abnormal with normal eyesight) abnormal.

A 4.5cm lymph node is never going to look normal when the surgeon looks at it.  Normal lymph nodes are generally less than 1cm.  So if your node is positive for cancer, you would not fall into the groups where limiting node dissection to the SNB despite a finding of cancer on microscopy has been studied.

The big unknown is whether or not you have cancer.  There are a few other conditions that can cause very large lymph nodes.  Most surgeons would not want to proceed with a surgery like an ALND without a "tissue diagnosis" because of the chance that you are the one out of a large number with your findings who does not have cancer.  "Tissue diagnosis" means that the tissue has been examined under a microscope, the diagnosis confirmed.  

I am guessing that one of these is what is going on:

1) Your surgeon is so sure that you have cancer that he is not describing any scenarios other than the ALND, although he does plan to send something up to pathology during the surgery.

2) Your surgeon and hospital for some reason do not have the capability to do microscopic examinations DURING your surgery.  If this is the case, quickly get yourself somewhere else.  If they don't have the capability to do SNB, then you have to wonder if they can examine the surgical margins of the lumpectomy in real time.  If they can't, that opens the possibility of needing a second larger excision if the surgeon doesn't remove enough tissue.  That's not a disaster, but why go through it.  It also opens you up to the small possibility that you could undergo the damage of an ALND without needing one.

What a pathologist can determine during a surgery is fairly limited, because the longer the patient is in the OR the higher the risk of complications, and some of the fixing and staining of the tissues takes hours and hours.  That's why you can't get a complete path report until a while after the surgery.

If you talk to the surgeon and things still don't sound right, find a second opinion.  

Having cancer in the lymph nodes does change your prognosis and what treatments are recommended.  I know from experience it can be very, very scary to find out cancer is in your nodes.  Hang in there.  Many women who have faced the situation you face now have done well.

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Mar 16, 2013 04:45PM lemon68 wrote:

I can share with you that before my SNB I had visible lymphnodes that could be easily seen. They were fairly certain of invasion. I had 2 out and both were negative. Told me my lymphnodes were the size of grapes, no idea what caused them to be so inflamed. I did have 2 isolate tumor cells near the sentinol node but they still call them negative. Until they get them out and send to pathology its all a guessing game. I would defintely ask why the ALND. My concern would be recovery and lymphodemia. The SNB is no picnic but I hear the ALND is far worse.

If you come back as ILC please visit us at Team ILC Warriors thread. I was just DX 01/04, I have learned so much for the loving women with much more experience than me. In regards to how scared you should be, I can only say from personal experience the whole thing scared me more than anything in my life, I am still scared. But something else in you will kick in a strength you didnt know you had and you will move forward. gillyone is right, its a crap shoot and we shoot all kinds of crap at it and hope, pray for the best outcome. The knowledge here on these boards is priceless. Please let us know how it goes for you, we are here for you.

((HUGS))

Don't compromise yourself. You are all you've got. There is no yesterday, no tomorrow, it's all the same .... day.

Dx 1/4/2013, ILC, <1cm, Stage Ia, Grade 2, 0/2 nodes, ER+/PR+, HER2-Surgery 12/31/2012 Lumpectomy (Right)Surgery 01/24/2013 Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Radiation Therapy 03/18/2013 ExternalSurgery 09/19/2013 Prophylactic Ovary Removal (Both)Surgery 05/05/2014 Mastectomy (Both); Prophylactic Mastectomy (Left); Reconstruction: DIEP flap (Both)
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Mar 16, 2013 06:05PM Outfield wrote:

ALND can cause multiple longterm problems.  That's the whole reason that the process of SNB was developed.  The risks of longterm issues are considerably lower.   Lemon68, you are exactly the example of why in most places the surgeon would not proceed directly to ALND, even if there were already a tissue diagnosis for the primary tumor!  

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Mar 16, 2013 07:18PM, edited Mar 16, 2013 07:20PM by Beesie

Just to clarify my earlier post, I wasn't questioning the fact that the surgeon plans to remove nodes. That is unusual for an excisional biopsy, but I certainly understand in this situation why the node removal is being done, given that the surgeon is quite certain that cancer will be found and given the appearance of the node from imaging.

I am questioning why it's an ALND rather than an SNB as this first step.  Outfield, I agree that there remain today many situations where an ALND is recommended after a positive SNB; I was saying simply that an ALND is no longer automatically assumed in this situation, as it used to be even just a couple of years ago. So starting out with an ALND before there is a diagnosis of breast cancer or any confirmation of positive nodes is what to me is concerning.  If there is a diagnosis and if there are positive nodes, at that point a decision can be made on whether an ALND is advisable.

The other thing that worries me is the comment from the surgeon about not removing many nodes.  That suggests that he doesn't think that many nodes are affected, which of course is a good sign.  But if he's not injecting the dye or isotopes, how will he know which few nodes to remove? That's the other thing that raises a red flag for me. Either a surgeon does a proper SNB or a surgeon does a proper ALND, not something in-between. I realize that in doing an ALND, the surgeon can to some extent choose how many nodes to remove, but usually the entire first level is removed, along with at least a few nodes from the second level.  The actual number of nodes may vary, since our nodal systems are all unique. Here's an explanation from BC.org: How Many Nodes Removed?

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 16, 2013 10:42PM Outfield wrote:

Yes Beesie you're right, a lot of it doesn't make sense.  

I didn't see that there is no tracer or dye injection planned.  Is that in another post?  That's disturbing.

An adequate ALND involves removal of a minimum, but not a maximum, number of nodes.  I have always thought a "few" means roughly 3, which would not be that minimum.  

Foregoing the SNB and just proceeding to ALND simply isn't standard of care, unless there is already tissue diagnosis of a grossly abnormal node.  That generally would be via needle biopsy of a very large node.  The situation where positive findings on a SNB doesn't necessarily mean that a person needs a full ALND is when micrometastases are found.  That means a few tumor cells in the node, but the node looks normal to the eye and is not sheet after sheet of tumor cells on the slide.  A node that is 4.5cm because of cancer would not fall into the category of micrometastases, so at this point, unless it's in a clinical trial, an ALND would be indicated.

vhlavaty, I think what both Beesie and I are getting at is that either your surgeon is proposing to do something that is simply not standard of care, or he is generalizing his explanations so much that he's being misleading.  If it's the second, talking to him may be very worthwhile.  If it's the first, getting a prompt second opinion is probably in your best interest unless he can cleary explain why he's not following standard of care.  The inability to establish whether your 4.5cm node is that large because it has cancer in it or for, like Lemon's large nodes, something different, would not be considered a good enough reason in this country.

I truly hope that like Lemon68 the surgeon is wrong and your large node is benign.  Even if it's not, even if you do have grossly positive cancer in the axilla, there are still effective treatments.  The issue is that the more treatment, the more side effects.  I know this has got to be very scary to read.  I was panicked out of my head when my surgeon told me she felt concerning nodes.  I couldn't even put my hand there to wash until after my sugery.  But if you do have cancer, this time is the worst part.  

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Mar 16, 2013 11:54PM Beesie wrote:

Outfield, I made an assumption about the lack of dye or isotope injections. 

The surgeon has said that he'll be doing an ALND. If the surgeon is planning to do the injections and planning to remove just "a few" lymph nodes, that's the textbook definition of an SNB.  So why wouldn't he call it an SNB then?  Since the injections are usually not part of the ALND process (they can be but usually aren't), I've assumed that the injections aren't planned and that's why he's saying he's doing an ALND.

Maybe this is all just miscommunication and he is planning to do an SNB.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Mar 17, 2013 12:22AM, edited Mar 17, 2013 12:23AM by vhlavaty

The surgeon spoke the words that he would only be removing "a few" lymph nodes. My surgery orders read "axillary node biopsy & lumpectomy." So perhaps I'm reading this wrong. ???? I had just a little over 48 hours between my mammogram & ultrasound and my meeting with the surgeon. I did as much research as I could in order to ask the right questions. Since then I've been doing research on the terminology included in the copy of the radiologist's report: BI-RADS 5; likely and invasive lobular carcinoma; appropriate action should be taken immediately.
So...I guess, now more than ever, I need to get in with the surgeon before surgery on Friday.

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Mar 19, 2013 03:27PM Cowgirl13 wrote:

Vhlavaty, I'm wondering if you could postpone the surgery on Friday and get a second opinion.  If it were me, I would be uncomfortable with having my questions answered only a couple of days prior to surgery.  I need time to sit with new information and do not do well if I feel rushed.  There are definitly times where an ALND is required, however, there could be lifelong consequences re: lymphadema so I would go the SNB route first.  

Good luck.  I hope my opinions/suggestions have not made you uncomfortable.  

Liz

Dx 5/28/2009, IDC, 2cm, Stage IIa, Grade 3, 0/4 nodes, ER+/PR+, HER2+