Need Lymph Node info

libraylil
libraylil Member Posts: 528
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Two weeks ago I was diagnosed with ILC in the left breast.  2 small areas, one smaller than a dime and one about 1cm.  Was feeling fairly ok until they did the MRI and biopsied one lymph node they felt looked "plump".  Sure enough, it was positve.  Met with the surgeon yesterday who gave me my options. My tumors are E/P positive.  Thank goodness for this board which educated me before the appt.  All options were presented and I am thinking of going with the neoadjuvant chemo as I can start that immediately.  At least I will feel like I am fireing ammo at the invaders.  The lymph node involvement has me really scared.  Can you educate me on this part of BC please.  Before the biopsy I felt that since the tumors were small, probably no lymphie involved.  However, I realize this could be the only one.  I'll meet with the onco Monday.  Beth

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  • lamuso
    lamuso Member Posts: 123
    edited August 2010

    Hi Beth.  I also have ILC.  My tumor was just over 5 cm and learned I had 1 lymph node involved after the sentinal node biopsy.  I believe they took out 5 nodes. I remember my oncologist telling me they found only one cell in the lymph node but I'm not sure that means much.  Some people have tiny tumors with lots of nodes involved and others have huge tumors and very little or no node involvement.  The grade of your tumor may give you some insight.  Grade 1 tumors are the closest to normal looking cells, grade 2 is a bit worse and grade 3 has the most significant changes which means the tumor is more aggressive.  I hope I'm explaining this well enough.  Hopefully others will jump in.  I'd like to know about my lymph node also with just one cell in it and know what that means if anything?  Take care and you will get through this just fine.  I had chemo first to shrink my tumor then the mastectomy and radiation to follow.  The women on this board are wonderful and you should come here for support often.  It helped me a lot.  I don't post often but so many times my issues are the same ones I read about.  Again, take care and you will get through this.

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  • Gitane
    Gitane Member Posts: 1,885
    edited July 2010

    Hi Beth,

    I had neoadjuvant chemo.  I had my sentinel node biopsy surgery before beginning the chemo so I would know my nodal status before chemo interfered.  I also felt good knowing my tumor responded to the chemo, another advantage of neoadjuvant.  Hope the oncologist appointment goes well.  Let us know how we can help. 

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  • JacquiAL
    JacquiAL Member Posts: 54
    edited July 2010

    Hi Beth,

    I'm trying to find out the significance of lymph node involvement also.  I had 2 positive lymph nodes out of 22.  I can't find much research on the Internet.  I will ask my Onc when I see him in September.  I did read on the Internet that they are starting to treat 3 or less positive lymph nodes the same way they treat no lymph node involvement. I don't now if having 1 to 3 positive lymph nodes means a higher risk of recurrence or mets.

    I'm glad you asked this question and hope there are responses from more knowledgeable people.

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  • Seabee
    Seabee Member Posts: 557
    edited July 2010

    Beth--Having a positive node when other things seem so favorable is no big deal. Catching cancer cells is the node's job. Having a positive node may or may not mean that the tumor is aggressive. As Leslie mentions, grade is a better indicator of that. As I read the latest NCCN guidelines, it's less a matter of whether a node is positive than a question of how positive it is. Leslie's one cell wouldn't matter, but if the cancer has grown to 2mm or more in a node, then chemo is recommended. If the node colony is less than 2mm, you may have the option of taking the Oncotype DX test.

    You don't mention any other options. What were they, and what chemo regimen was suggested for neo?

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  • JacquiAL
    JacquiAL Member Posts: 54
    edited July 2010

    Hi Beth,

    I wasn't clear in my last post.  When I said I read they are starting to treat 3 postive nodes or less the same way they treat 0 positive nodes I'm thinking this is only in terms of whether or not one can use the Oncotype Test. Also it's my understanding that they take the number of positive nodes into consideration when they are Staging which I think effects the treatment plan.  I had radiation that included the tumor site and lymph nodes.  I had a micrometastiasis (1.5mm) in one node and the other node was metastatic carcinoma (2.5mm). What determined whether or not I needed chemo was the Oncotype Test which I could use because I am ER+PR+Her2- and had less than three positive nodes.  My score was 17 and my Onc thought the chemo would be slightly detrimental to me so he recommended that I not have it.  Also the Oncotype Test indicated that I have an 11% chance of recurrence but said nothing about mets. I don't think the Oncotype is telling me the significance of positive nodes because it was the tumor that was tested for the Oncotype.

    So I'm still trying to figure out if the positive nodes have anything to do with recurrence or mets.

    Again, I hope someone with more knowledge will respond.

    Jacqui                                                

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited July 2010

    Hi beth, all the ladies gave you good advice, i have one sentinal lymph node positive, and the way my onco explained it was it was a good thing it caught it before it escaped, i asked him could it eventually and he said yes, it could but that is why we are doing chemo- I know that chemo is not a guarentee but it reduces the chances significatly- here is a link for emotional support that you can call for any questions you may have if you dont get the immediate answer you would like, i havnt called it my self but i hear it is great and they really help to answers all your questions (((hugs))))))

    Get immediate emotional relief.
    Talk to a breast cancer survivor.
    Call 1-800-221-2141 or e-mail us now.

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  • Seabee
    Seabee Member Posts: 557
    edited November 2010

    A few years ago, the standard approach was to recommend chemo if there was any node involvement, because of course there is a statistical correlation between the level of node involvement and outcome. The Oncotype DX test offers a much more nuanced way of determining how aggressive a tumor is, so the distinction between node positive and node negative has become less important than it was. This seems sensible to me, because statistics only indicate general tendencies.

    I see women posting here who have done very well in spite of having a number of positive nodes, and others who have no node involvement but a very aggressive tumor.

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  • JacquiAL
    JacquiAL Member Posts: 54
    edited August 2010

    Seabee,

    Thanks so much for this information.

    Jacqui

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  • Seabee
    Seabee Member Posts: 557
    edited August 2010
    Jacqui--You're welcome.Smile Since I had positive sentinels, it was question that interested me.  There was a very good thread on nodes on the IDC board a few weeks ago.
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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited August 2010
    Jacqui-We seem to have similar diagnosis.  My Oncotype score was 16 and I had one positive node.  I'm not certain because I haven't looked at my Onco report for a while, but I think my recurrence risk was higher than 11%.  Does your report have a second sheet (for node positive women)?  Also, keep in mind that the Oncotype stats for node positive women are when they take Tamoxifen (I think for 5 years).  I think you were diagnosed almost a year ago, did your Onc not thoroughly explain these things?  You say you chose not to do chemo, did you have other treatment? As you are ER+ are you on hormone therapy?  As you haven't gotten enough info from your Onc, I would suggest calling the Oncotype DX company directly.  Their phone is on your report.  They were very helpful and thorough answering all my many questions.  As for me, though the statistics said I would not get much benefit out of chemo, I just couldn't feel at peace with that decision.  I did choose a less harsh chemo, CMF, just finished my 4th of 6.  Everyone has to make up their own mind what is right for them. Have you been on the Cancer Math site?  It was very helpful when I was investigating treatment options.  You plug in all your specifics and it projects out survival, recurrence statistics.  However, it does not factor in  the Oncotype score. I hope you are able to get all the info you need to be at peace with all of your decisions.
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  • JacquiAL
    JacquiAL Member Posts: 54
    edited August 2010

    Hi DesignerMom,

    My Onc told me that for the Oncotype they treated 3 positive nodes or less the same as node negative. I just checked my Oncotype and the Recurrence Score is 17 with an average rate of distant recurrence of 11% with five years of Tamoxifen. I am taking Tamoxifen but am on a month's break (my Onc is ok with this) due to insomnia.  The plan is I will take Tamoxifen or an AI for five years.  I did have 6 weeks of radiation also. My Onc told me chemo could be slightly detrimental to me so that helped make my decision.

    I will check out the Cancer Math Site.  Thanks for the information.

    Jacqui

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  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited August 2010
    Jacqui-  Statistically I was told chemo would not change my outcome much.  I just couldn't get comfortable without doing it.  I will have rads next and then am supposed to do Tamoxifen.  I am still not sure about the Tamoxifen.  I am in the research mode for that now!  Best of luck to you!
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  • JacquiAL
    JacquiAL Member Posts: 54
    edited August 2010

    Hi DesignerMom,

    I think if you are comfortable with the chemo that's the way to go.

    I didn't have any problem with rads.  I just had a few red spots in a few areas that didn't hurt. The techs were wonderful (one in particular) and I was teary-eyed on my last day both because I was glad I was finished and also because I would miss the kindness of the techs.  I wrote a letter to my rad onc about the one tech that was particularly kind and caring and she (the rad onc) told me she was glad to get it and that people don't often do something like that. 

    You probably know there is a long thread about Tamoxifen on these boards; I think it is called "Bottle of Tamoxifen" or something close to that.  I started taking Tamoxifen in February and the only initial problems I had were cramps in my calves which stopped when I took a potassium supplement and very dry skin on my face which my dermatologist took care of by prescribing Retin A.  Then about two months ago the insomnia started.  My onc does not think Tamoxifen is causing the insomnia but feels it is ok for me stop taking it for a month to see if it could be the cause.

    I am postmenopausal so I can go to one of the AIs if necessary.

    Best of luck to you also.

    Jacqui

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  • ninap7
    ninap7 Member Posts: 50
    edited November 2010

    how are you doing now and what was ur treatment

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  • libraylil
    libraylil Member Posts: 528
    edited November 2010

    Wow, my original post was July 30.  That seems SO long ago.  I am due to finish my 6th chemo (TCH) Friday after T'gving.  Besides the ER/PR positive I also found out I was HER2 positive so I'll stay on Herceptin a year.  After my first chemo the onco examined me and said the tumor had shrunk at least 60 percent.  After the 2nd he felt like all he could detect was scar tissue.  I go for a Mammo with the surgeon Dec 15th so I guess that will give me more into and a lumpectomy on Jan 4.  That dang positive lymph node still has me worried.  I will accept that as a surgery "perk"  since they will remove side fat as they remove the lymph nodes.  I guess after the surgery I will know how many were positive.  Hope it is only the one.  All of you were so wonderful when I was in panic mode after my diagnosis.  I feel like people give you the "sad eyes" when they hear lymph node.  The oncologist just says he is not treating the breast tumor, that it is the "canary in the mine" and will end up in a jar.  This was to see if my bc responded to the chemo.  They are more concerned about any cells that might have escaped..  Either way HER2 positive or lymphies earns one a seat in the infusion room. All of you have a great holiday. Beth

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  • Lee7
    Lee7 Member Posts: 657
    edited December 2010

    Hi Beth,

    I understand about the "sad eyes" when you say you have a positive lymph node. I too have at least one definate 2mm node and maybe a second node with isolated cells found when I had the lumpectomy and the sentinel node procedure.  I still had the Oncotype done and my score came back 20.   I'm about to go have the rest of the nodes out now to see if anymore are positive and have a port put in for chemo (CMFx6).   I really, really don't want to do chemo but like you say...that positive node seems to guarantee having to do chemo ....it has had me scared silly.  

    Best of luck with your surgery and yes...lets hope no more nodes are positive.

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  • libraylil
    libraylil Member Posts: 528
    edited December 2010

    HLiLLY let me know when you start chemo.  It was not a fun party, but not nearly as bad as I had anticipated.  I was so scared when I had the first c in August.  I think we all are.  They'll give you plenty of antinausea drugs to ward off tummy troubles.  Take them...you don't get prizes for leftover meds (the oncology nurse told me this). 

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  • DawnEllen1
    DawnEllen1 Member Posts: 4
    edited August 2013

    Terrified of chemo, myself.  Have ILC, left modified radical mastectomy with one of nine lymph nodes positive. Stage2/Grade 3/Triple positive.  Have an expander with two drains. Still have the drains in after one month due to the fact that one of them is still producing 50-80ml/24 hrs. Will be getting the port in soon, then starting chemo (carboplatin and taxotere with herceptin), then radiation therapy to follow.  The cancer in that one lymph node started to grow out from the node itself; "extranodal extensions" identified. I was hoping that I would not have to have radiation therapy, but thanks to those extensions, I do.  Just see a long and dismal road ahead, and the thought of 18 weeks of chemotherapy just terrifies me, deep breath, then six weeks of radiation therapy.  When will it ever end?

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited December 2010

    (((HUGS))) Dawnellen. It truly sucks.

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  • lago
    lago Member Posts: 17,186
    edited December 2010

    DawnEllen1 Just some support here. I too am triple + stage IIB (no nodes but larger tumor). I just had my 4th tx of THC on Tuesday (2 more to go). I actually went to a party last night and stayed till 11:30. I'm not saying I don't have some SE but I'm doing rather well. I would have gone to the gym today but didn't want to deal with the snow.

    I went in thinking 3.5 months of chemo, yes I can do that. It's really not that long. I expected to feel like I had the flu for 3.5 months. Nope, the flu is 100 times worse than chemo so far… well except you don't lose you hair with the flu.

    Everyone is different but you will find most women end up realizing chemo was not as bad as they thought it would be. We are all scared of the unknown.

    Take one phase at  time. Get through chemo then deal with rads. Looking at the entire picture can be overwhelming. I can't believe I'm 2/3 way through already with chemo.

    {{{{ hugs }}}}

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    LibraryLil and DawnEllen - sorry to have to welcome you to the very special rare triple positive lobular club. There a just a few of us on here. I finished my chemo in March and had my last herceptin last week - hang in there you can do it. Also, radiation wasn't too bad. Women who have just come out of chemo tend to cope better with the rads and I found it to be relatively easy.

    The main thing is throwing everything you can at it.

    (((((((((((((((((((((((HUGS)))))))))))))))))))))

    Sue

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