43 with a positive lymph node—chemo thoughts?

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kathabus
kathabus Member Posts: 205

Hi—

We thought we would be taking out an 8mm mass with clear nodes....it was 2.5 cm with 1/1 positive sentinel node. I know chemo can sometimes be avoided if you are post menopausal. Any premenopausal gals out there in this scenario?

I requested the oncotype test to help in the decision, but I’m curious on how this is typically handled. Thank you ladies!

Comments

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited April 2020
    Most people wait for the Oncotype to make a decision about chemo. Hope you get your results soon. Mine took about 2 weeks and the oncologist called me directly, but I have seen many other scenarios reported here. Good luck and keep us posted.
  • kathabus
    kathabus Member Posts: 205
    edited April 2020

    Thank you. And 💯 understood.

    Using oncotype in premenopausal women with a positive node is a newer concept...so just looking to connect with women in my scenario 😊

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited April 2020
    I also had a 2.5 cm tumor and micromets in one node and was premenopausal. However, they first told me isolated tumor cells (ITC) and my report came back as node negative. Now, I wonder what my score would have been if it was node positive since you are supposed to count micromets as positive (although in my mind I don’t because it was 0.26- cutoff is 0.25). All this to make sure you get the node positive report.
    I was 100% ER, PR positive so antihormonal therapy is my “chemo.” Do you have results on your percentage of ER, PR?
  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited April 2020
    Also, with your age being under 50, you will want to take into consideration the TailorX study that gives recommendations based on being over or under 50.
  • kathabus
    kathabus Member Posts: 205
    edited April 2020

    Thank you for your response! We have a similar story. I am 94% E and 88% Pr. I’m worrying about something that hasn’t happened yet 🤪 but I had 1 node removed and it was macro. I think if I had a clear node I would be feeling better. But radiation is expected to take care of anything that’s there.

    I worry about if chemo is not recommended. But you’re right...I just need to be patient and wait for the score. 😊 And thank you for the good reminder about our cancer being hormone dependent and lots of ways to block them. 😊 Sometimes I forget all the tools we have for that

  • KezNYC
    KezNYC Member Posts: 5
    edited April 2020

    I am 46 and I was in similar situation, initially thought it was 1cm and during surgery said node negative, then ended up being almost 2.5cm with micro mets. Surgeon told me the micro Mets didn't mean chemo was certain but when I saw oncologist, it wasn't even a discussion. Their absolute recommendation was chemo because of the node positive. We did oncotype anyway but she didn't expect it to change her view. Said it would have to come in really low and that was not the expectation.

    I had breast cancer 6 years ago also. Back then I was node negative, onco was in the grey area and oncologist said it was my decision on chemo - I did it as didn't want to face it coming back and regretting not doing everything I could.

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2020

    kathabus, the Oncotype for node positive has been in use for quite a few years now, so you should find lots of women who've been in your situation. I just did a search (used the search bar on the left side of the page) and input the words "Node Positive Oncotype premenopausal" and came up with 259 posts. If you do that, it will lead you to some other threads where this has been discussed.

    As an FYI, the TAILORx study was specific to node negative breast cancer, so it would not be relevant in your case.

    Peregrinelady, to my understanding the Oncotype test for node negative and node positive is the same - it's the same 21 genes within the tumor that are evaluated and the same formula to develop the score. So your score would have been the same whether you were classified as node negative or node positive. The difference comes in the recurrence risks that are associated with each Oncotype score - there are separate scales for node negative and node positive. So if your score was assessed against the node negative scale to determine your recurrence risk, I believe you could simply look at the recurrence risk associated with your score on the node positive scale to determine what difference that would made.

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited April 2020
    Thanks, Beesie, I did not realize TAILORX was just for node negative. Good to know about Oncotype score, as well. I don’t think it would have changed anything as far as chemo and hormonal therapy decisions for me, but would like to know if recurrence % is higher. Although, after BCI testing, I am continuing past 5 years with Arimidex anyhow.
    Kathabus, I got 3 different opinions and all said that radiation had more risk than benefit. However, I have seen many women here have radiation in your situation.
  • kathabus
    kathabus Member Posts: 205
    edited April 2020

    Thank you KezNYC—that was very helpful. I am hearing what you were told....the oncotype score needs to be VERY low in situations like ours....premenopausal and node positive. Some oncologists like under 10. What did your Score wind up being?

    And thank you Beesie—you’re on top of it!

  • OnlyGirlof5
    OnlyGirlof5 Member Posts: 78
    edited April 2020

    Hi Kathbus,

    I am also premenopausal with a positive node and oncotype score was obtained. I had 1/3 nodes positive but was told at .33mm that is micro. Others here have said that is macro, so not sure the difference.

    My oncotype ended up being a 4 so no chemo and I was started on Tamoxifen.

    I have a consult with RO on Thursday. I am praying I will not need it as this will only delay my reconstruction further. But I will do what is needed to held fight off this crap from returning.

  • ajminn3
    ajminn3 Member Posts: 327
    edited April 2020

    I went into surgery with extensive DCIS and came out with 1/3 sentinel nodes with 3mm of IDC. I’m 34, pre-menopausal and just completed 3/6 TCHP, once done will continue on with HP for the remainder of the year, rads, and hormone tx for 5-10 years. I get the marathon! Chemo was highly recommended because of my HER2+ status. While I don’t love doing chemo there was no way I was going to turn it down to make sure I did all I could to avoid a reoccurrence

  • JRNJ
    JRNJ Member Posts: 573
    edited April 2020

    Kathabus, It depends on the Oncotype and your mental state. I was determined to be aggressive. I was very concerned when I had 2 positive nodes, 2 mm and 3 mm, macro is 2 mm and over. I was also very concerned that they didn't take out more nodes and that I might have more positive nodes. For you they only took out 1 node, so you could have more positive nodes. Sloan has a node calculator. I still had a 17% chance of more positive nodes. And I read about another person pushing for the ALND with micromets and she did have more positive nodes. I was pre-menopausal at 54. I predicted I would be in gray area, and I was right. But ILC is usually low, so I don't know where you will end up. Do you know your miotic score or KI-67? They are good indicators, along with ER status. But you are also young, and they tend to be more aggressive with younger patients.

    As noted by Beesie, tailorx is for node negative. The node positive swog study has much less data and is older postmenopausal women. I got both reports because they submitted me as node negative first. The score was the same, but the recommendations are different. There is an ongoing trial that won't be completed for several years. Node negative will show numerical results. Node positive reports will not due to lack of sufficient data. It just says "no apparent benefit". My oncotype was 15. I went for 3 opinions because I didn't want to look back with regret. MY MO said I don't know what to do with you, second nci center doc said No chemo, Sloan Dr. said YES to chemo for the reasons stated above. NCCN guidelines even say the range from 11 to 18 is really undetermined for node positive. Sloan recommended cmf because I was in the gray area and it had less permanent side effects. Sloan also recommended ovarian suppression and AIs over tamoxifen.

    Regarding radiation and chemo, I was told they are completely independent of each other. One is for local recurrence and other is for whole body. They said yes to radiation right away for me due to LVI, so didn't get another opinion on that. Don't know what they would have done without LVI, but I would have been upset if they didn't do radiation due to my node paranoia. NCCN guidelines state that for 1 to 3 macro nodes either ALND or radiation should be considered. Chemo was more difficult to determine, but LVI played a part in that decision also according to Sloan Dr.

    KezNYC, did you do CMF and radiation with the first Dx, or second? Are you with Sloan, they are big on CMF? My evaluation was done by Bromberg with Sloan. I loved her, but stayed with my local MO. But I keep seeing people who did CMF and had a recurrence.


  • kathabus
    kathabus Member Posts: 205
    edited April 2020

    JRNJ— Thank you!! You touched on so much that I’m feeling...especially with the nodes. My feeling is I need chemo and I think that will be mimicked by my MO even for a midrange score. My Ki67 from my biopsy was 21%. I suspect my score will be similar to yours....but who knows.

  • KezNYC
    KezNYC Member Posts: 5
    edited April 2020

    Hi JRNJ, yes I am also at Sloan and I did do CMF after the first dx and lumpectomy (negative node) and radiation. I had just been assigned to their ‘survivorship’ plan after 5 years clear when the second dx came back. Initially the surgeon said it was the same cancer back but the oncologist said it was a new occurrence that happened to be right in same area. Not sure what to believe on that one. So now they are hitting it harder with AC-T (and I had to have a mastectomy as they can’t do radiation twice in same place). I was on Tamoxifen for 5 years so worrying this grew anyway. I plan to have my ovaries removed once I get through this.

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