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positive lymph nodes with extra capsular extensions?

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tsquare
tsquare Member Posts: 19
edited August 2022 in Just Diagnosed

Hello. Anyone have positive lymph nodes with extra capsular extensions? What treatment options are there? I read something about aggressive treatment, what does that mean?

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  • dani444
    dani444 Member Posts: 215
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    Hello, I also had ILC 4.8 cm with two positive nodes, one with extranodal extension. My mammaprint was low risk so I did not have chemo. I did choose radiation instead of ALND as the tumor board decided that was a safe choice. You don’t mention your age, as that may drive some of your decisions, also number of positive nodes will make a difference.

  • scaredme
    scaredme Member Posts: 65
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    I did. But in my case, chemo was a given since I had 8 nodes effected.

  • sondraf
    sondraf Member Posts: 1,597
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    I did, 7 of 12 nodes positive with extracapsular extension in one node. Clearly that didn't work out for me, but when I had the primary removed, radiation was a definite to both prevent new development on higher level nodes. Otherwise I am on targeted systemic treatments.

    Have they scanned you further?

  • tsquare
    tsquare Member Posts: 19
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    @dani444 @scaredme @sondraf thank you all, your response means a lot to me.

    I am 55. To give you a bit of background,I started the whole journey by a routine mamography, then biopsy, and a surgery was decided for lumptoctomy and radiation, and hormone therapy. After an unrelated lombar pain and a visit to emergency, I had a CT scan and they say 2 dots on liver. Game changer! Went to all kinds of appointment and imaging which -thank God- turned negative. So there I was back to square one. Breast MRI and then mastectomy and Sentinel node surgery. Pathology test comes in, and another surprise: 3/3 positive nodes with varying ECE.

    I do not know what to think now. Everytime I go in for an appointment I get a new variable: kind of getting different punches in a boxing match!!!! I am trying to know more so I can make educative discussion and decisions with the oncologists next week. Any input is highly appreciated.

  • tsquare
    tsquare Member Posts: 19
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    Further more, I read new research that says that when it is 3 nodes, radiology should be enough. My surgeon said I will probably have chemo because it is 3 positive nodes, and dismissed my question about oncotype dx score as not significant because it is 3 nodes.

    In all cases, what does aggressive treatment mean? What is the mean here for mild or regular or agressive.

  • kaynotrealname
    kaynotrealname Member Posts: 392
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    For you being hormone positive it will depend on age and oncotype score. Although with node involvement and under 50 they usually recommend chemo no matter what and maybe that's why your oncologist said oncotype won't matter. At least that's what my oncologist told me. Anyway general consensus is below a 25 oncotype score and above age 50, no chemo as long as there is only minor node involvement. They'll treat with endocrine therapy either five years or ten years, ten years of course being the most aggressive. For the 50 and below crowd, below 15 on oncotype score, no chemo, 16 through 20 is a very small benefit so might or might not recommend it depending on other factors, and 20 to 25 it is normally going to be recommended because there does appear to be a decent benefit. Aggressive treatment isn't always best but the most aggressive treatment would be chemo on top of endocrine therapy although the type of chemo and then amount of times you get it can differ. What they consider aggressive treatment will also depend on the type of breast cancer you have also. Hormone positive tumors can a lot of times only be treated with endocrine therapy and that's considered plenty aggressive. HER2 positive tumors and triple negative will always get chemo and HER2 will also be treated with immunotherapy. That would be aggressive for them.


  • tsquare
    tsquare Member Posts: 19
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    Thank you @kaynotrealname. I have a better idea now maybe. I meet with oncologists next week. I will try to get a handle on things and have a set of questions with me to ask them and clarify. With new details coming up all the time, I hope I do not get new surprises and more whirlwind. Good luck to you and all here.

  • brittonkb
    brittonkb Member Posts: 81
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    tsquare - I had 3 of 4 positive nodes with ENE for one node not detected until my lumpectomy. I was 48 years old. I was treated aggressively with AC-T chemo followed by radiation to breast and underarm. I had a hysterectomy following radiation as I was premenopausal and take an aromatase inhibitor (Arimidex) which I will take for 10 years. I also have Zometa infusions every 6 months (will have a total of 6 treatments). It sounds daunting but wasn't as bad as expected. I also tolerate the aromatase inhibitor pretty well.

  • tsquare
    tsquare Member Posts: 19
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    @brittonkb I hope you are doing well. It does sound daunting with all the names and treatments, but your attitude helps me think it is doable. I hope my anxiety level will go down to understand all there is to be able to go through the agressive treatments and be able to handle it. I do not know about radiation to breast area though, because I had a mastectomy.

  • kaynotrealname
    kaynotrealname Member Posts: 392
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    I did just realize you've got an ILC tumor. Chemo is not recommended as much for them as IDC. It doesn't appear to be as successful. So that's a variable you might want to discuss with your oncologist also.

  • pebblesv
    pebblesv Member Posts: 486
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    Hi tsquare - So I’m in the younger than 50 crowd, cancer in 2 nodes, did NOT do chemo, and am now 4 years out NED with a clear mammogram just today!

    What I did do on treatment - lumpectomy, radiation and hormone therapy (tamoxifen) which I’m still on for another year. Luckily SE have been minimal/tolerable for me on tamoxifen and I’m still pre-menopausal even while on it.

    I have two recommendations as you research more to make the right decision for yourself:


    1. Insist on an Oncotype DX test if you can. I believe you qualify for that if you are ER/PR+ and HER2- and tumor is less than 2mm and it’s 1-3 nodes. Somewhere in these forums is a thread I found with similar diagnoses and it varied for all of us who did chemo and who did not and often it came down to the Oncotype score.

    My surgeon initially said since cancer was in the nodes that chemo was a must, but armed with info, I asked about the Oncotype test and my oncologist agreed we should do the Oncotype test. It came out with a score of 21 and graphs showing that chemo had no benefit be hormone therapy in my case (it’s very individualized) so at that point, my oncologist actually said he would not recommend chemo due to the higher risk of major SEs and the Oncotype saying it would provide no benefit for my case. I do take the hormone therapy tamoxifen as I feel it was my “ticket out of chemo” and feel I have weight gain related to it and sometimes a less regular cycle, but other than that have not experienced any other SEs. My oncologist thinks that maybe I’m tolerating it so well because I’m pre-menopausal.

    2. Research articles on the long term survival rates of those who did the full axillary node dissection vs those who just did the sentinel node biopsy following discovery of cancer in a few nodes or less. Here’s one which helped me decide to not do the full axillary node dissection. Interesting that my surgeon and radiologist were pushing the full axillary node surgery until I gave them my decision and then the radiologist actually stopped pushing and said he only needed to know to determine how to approach the radiation treatment and later supported my decision to refuse the ALND.

    https://news.feinberg.northwestern.edu/2017/10/10/trial-finds-no-survival-benefit-to-aggressive-breast-cancer-procedure/

    Anyways you just need to make the decision that’s right for you and your case, it’s all so individualized. Just do the research which you are doing! There forums were incredibly helpful to me as I was finding what path to take. You have options.

  • sondraf
    sondraf Member Posts: 1,597
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    With three ECE nodes.... I'd be considering chemo or some form of systemic treatment with that situation. Its a bit more serious than a little spot of cancer in a node. You may want to ask if there is more node clearance on the table given this output.

    ILC can also be trickier to pick up on scanning because it grows in sheets rather than clumps like IDC.

    This may be an instance where a second opinion would provide reassurance or more insight. Are you currently at a top rated cancer facility or have access to one?

  • scaredme
    scaredme Member Posts: 65
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    tsquare,

    Your path sounds similar to mine, but it looks like your tumor was smaller and I had ductal, not lobular.. I was diagnosed at 48 with a grade 3, 4.2 cm tumor and 3/3 sentinel nodes positive with one with extranodal extension as well as LVI. I had originally had a lumpectomy, but since my surgeon insisted on doing a full axillary node biopsy after my pathology came back and the margins were small, I opted to do a full mastectomy (with reconstruction) along with that surgery. They took another 17 nodes and found 5 more positive, bringing my total to 8/20 positive. They also did an Oncotype which came out to be 19.

    I then did 8 rounds of dose dense AC-T chemo followed by 25 rounds of radiation. I now get a Lupron shot every 3 months to suppress my ovarian function (I was premenopausal prior to diagnosis) along with taking an AI (Femera) daily. Because of the high number of positive nodes, I also take Verzenio twice daily for 2 years. Recently, they have put me on Zometa infusions every 6 months to strengthen my bones. It is also supposed to help prevent bone metastases.

    It has been quite the journey, but almost two years after diagnosis, I am doing well. All in all, I handled the chemo, as well as the AI well (I kept walking 3 miles a day throughout). Please let me know if you have any more questions. I am always happy to be a resource.


  • tsquare
    tsquare Member Posts: 19
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    Thank you all for your interaction and support. It is really helpful.

    kaynotrealname I will take the ILC point with me to the oncologist.

    pebblesv congratulations on your clear mammography. Your case gives me much hope. My surgeon said same thing about cancer in nodes and chemotherapy. I will insist on getting my Oncotype-DX so I can decide on options available, if any. I hope I don't hit a stone wall of just one option. From now until then, I will hope and pray that I too do not have to do chemo.

    AS for the axillary lymph node dissection, I also read in more than one paper that "Ten years of follow-up found lymph node radiation and lymph node surgery offer similar recurrence and overall survival rates for women diagnosed with early-stage breast cancer with a positive sentinel node." from https://www.breastcancer.org/research-news/outcome...

    sondraf I will try and see if I can get a second opinion. Reassurance and more insight are key words for me.

    @ scaredme so with your oncotype of 19, you still had chemo therapy. I read that if it is less than 25 then you move to another form of therapy, no? I am glad that you handled chemo well and are doing well. I think your "scaredme" name represents us all.

    Can anyone tell me what kind of tests do they give before starting radiotherapy or chemotherapy after surgery?

  • scaredme
    scaredme Member Posts: 65
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    I think the Oncotype score is more for people without significant lymph node involvement. Honestly, I'm not sure why they even did mine, but I threw it out there in case you wanted to know.

  • scaredme
    scaredme Member Posts: 65
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    You might find this useful.. It explains what treatments are the standard of care..

    https://screening.iarc.fr/doc/Breast_VIII.pdf


  • pebblesv
    pebblesv Member Posts: 486
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    Hi tsquare - I'm glad my case is helpful for you! And that's a great article too on the axillary node dissection vs. radiation showing basically similar survival rates long term, thanks for sharing. I'm really glad you are going to insist on getting your Oncotype DX test. I had to insist as well, luckily my oncologist agreed it was worthwhile in my case.

    I found the threads where others had cancer in their lymph nodes but did not do chemo - or some did and some did not depending on their Oncotype score. You can look at it this way - if you come out with a low Oncotype score, then you have a good validation to not need or get chemo. If the Oncotype comes back high, then you can feel better about the fact that if you did need chemo, it's for a reason and can be effective.

    Plenty of cases where nodes were positive, people did not do chemo (nor was it recommended) and there's been no recurrence so far - check out these threads:

    Oh and for me, I would say the radiation treatment I did was "aggressive radiation treatment" as they also targeted my lymph nodes and it was the full 6 weeks etc. And it was fine, I didn't have any SEs from what was considered an aggressive radiation treatment. If you go through radiation, look up Miaderm and Aquaphor and stay hydrated and lotion lots! No radiation burns for me at all.

    Hope that helps and keep us posted!

  • gb2115
    gb2115 Member Posts: 553
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    I also had chemo with an Oncotype of 19, but it was a recurrence. One of the docs said that the research Oncotype is based on is women with first cancers, not recurrences, so no telling if it was even helpful Information.

  • tsquare
    tsquare Member Posts: 19
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    @pebblesv hi! I wish that I can have just that radiation treatment like you. I don't know because as I have been reading, I am at the decisive point of 3 nodes. They say 1 to 3 nodes gets this and that, and then I read if it's 3 and over it's something else. Again, with 3 nodes, the option of ALND is still on.. it's the number 3 cuting edge of things..... My surgeon also said I will probably do chemo so l am not very hopeful anymore about that. The waiting and anxiety is just too much. I can't wait for next week so I can get some answers.

  • tsquare
    tsquare Member Posts: 19
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    @gb2115 thank you for your response. I am still trying to get a handle on things... It is so unpredictable and varies so much from one case to another, it blows my mind !!!

  • scaredme
    scaredme Member Posts: 65
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    The problem is that it could be more than 3 nodes. How many did they take with your sentinel node biopsy? For me, it was 3/3 positive.

  • tsquare
    tsquare Member Posts: 19
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    @scaredme hi! Like you I had 3/3 positive nodes after surgery. I understand there might be more, but how do one know? Are there further imaging test to tdentify that? How will they know to determine size of dose of whatever treatment options there are, if we do not know what the size of the problem is to solve it.

    I will do whatever it takes to better my situation, but at same time don't want over treatment.

  • scaredme
    scaredme Member Posts: 65
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    The only way to know for sure is an axial node biopsy. There are different schools of thought regarding those, but mine really convinced me that chemo was necessary in my case.

    The big concern is that there could be very small cancer cells that have escaped through the lymphatic system that do not show up on the MRI/PET/CAT scans. The more lymph nodes effected, the greater that chance is. Chemo will kill those cells.

  • pebblesv
    pebblesv Member Posts: 486
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    @tsquare - totally understand, the waiting is the most stressful thing. And in my case it was 2 nodes, but we also only took 2 nodes out. Anyways, I get it. Just keep doing your research and see if you can get referenced to an Oncologist to ask about the Oncotype DX test. In my case, my surgeon pretty much said the same thing - that since cancer was in my nodes, it was pretty much a given that I would need chemo. So, I pulled up the studies, I actually pulled up the forums threads I sent to you, and I provided the examples of other women with cancer in their nodes that did not need chemo. So finally, my surgeon said she would consult my oncologist. My oncologist was the one who agreed that an Oncotype DX Test was worthwhile in my case, and so once he was on board, that convinced the surgeon. And to be honest, my follow-ups have been with my oncologist.

    On what I did, I didn't do just the radiation treatment, I AM on the hormonal therapy tamoxifen and that's for a nice 5 years. But again, I have tolerable/minimal side effects so since it was for me my "ticket out of chemo", I'm sticking with the regime. Worst side effect appears to be weight gain, but my husband still loves me even when there's "more of me to love" so I guess I'm OK with it for now. Lots of times I want to quit tamoxifen, but as I don't have the joint pain or hot flashes or other common side effects, I guess I can stick with it for the 5 years. Especially after the clear mammogram 4 years in! So, a year and a half to go on tamoxifen and then hopefully I can keep the cancer away still on my own.

    Please keep us posted on how it goes for you. I completely understand the waiting game, I think that was the hardest part for me too. It's almost better to know, have a plan of action and just move forward with that plan of action. You'll be there soon and once you know your plan, I promise it will start to feel better. Somehow just knowing and having a plan that you feel good about helps a lot, but make sure it's a plan that YOU feel good about, not one that everyone else is pressuring you to do. Do the research, decide your own personal risk/benefit scenario and what risks you are willing to take for what benefits. On the axillary node dissection vs. radiation, I was not willing to take on a 50% risk of lymphedema with removal/surgery, but I was willing to take on a 15% risk of lymphedema with radiation. Some others are willing to take on the 50% risk of lymphedema for the benefit they will gain. It's entirely up to you, just understand your own risks and rewards and make your own choices.