Low Oncotype, Grade 3, Node-positive - chemo or not?

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KF2018
KF2018 Member Posts: 22

Hi all, first time post - but I have found this community to be very helpful during this process.

I'm in a tough spot and would love to hear insight. Background: Age 47 and premenopausal. IDC, 2.7cm, Grade 3, ER/PR+ HER2-, LVI present. Micromets in 1 node. Oncotype 14.

Hospital where I had my surgery (lumpectomy and SNB) said chemo, four rounds TC.

Went to a highly-regarded University hospital for a second opinion (transferring care there) and their tumor board had differing opinions.

Doctor 1 - no chemo based on Oncotype

Doctor 2 - would not have even run Oncotype with my stats, and would have done chemo, but now that we have the number, no chemo.

Doctor 3 - again, would not have run Oncotype and would have done chemo. Believes data isn't quite there yet for on Oncotype for someone in my position. Would proceed with chemo - four rounds TC.

Doctor 3 is my oncologist, and although she suggests chemo it's not a strong suggestion. She sent me home to think about the options. I'm glad I went to get a second opinion, even if it has made things more complicated. I'm the kind of person who likes a lot of information. The challenge is now, I don't know what to do. Basically we have two for and two against chemo. Curious to see if anyone else has been in this position?

Thank you!

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Comments

  • JoE777
    JoE777 Member Posts: 628
    edited November 2018

    For me , the grade and node involvement would push me to chemo. I was lucky and didn't have to have it. Onco score of 15 but now I'm metastatic at 69. Good luck.

  • KF2018
    KF2018 Member Posts: 22
    edited November 2018

    JoE777 - I am so sorry to hear that it came back. That's my fear... if i don't do chemo, that it will return. My logical side says - oncotype says I'm low risk, but my heart thinks of my three all kids and wanting to do all I can to make it stay away - even if it's not rational. I know there are no guarantees either way. Do you mind my asking - do you look back and wonder about chemo?

    I was also wondering - your Onco score changed or by 69 did you mean your age? I’m new to all of this!

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2018

    Dear KF2018,

    Welcome to the BCO community. We are sorry for your diagnosis and the decisions that you face but we are glad that you have reached out and find the community to be of help. We are certain that you will discover support and helpful information here to ease your path. While you are working on decisions you may want to review the information on Oncotype on our website. Let us know if there is anything we can do to help you along the way. The MOds

  • KF2018
    KF2018 Member Posts: 22
    edited November 2018

    Thank you Moderators! This is a great place during a not-so-great time. I have been greateful for the community and the recourses. I will check out the information on Oncotype. Thank you!

  • Careninnj
    Careninnj Member Posts: 53
    edited November 2018

    with positive node. Grade 3 and LVI i would have done chemo. No question..my onocotpye was 15. My stats are below. I got 3 opinions. Not one suggested chemo to me.

  • KF2018
    KF2018 Member Posts: 22
    edited November 2018

    Thank you Careninnj - yes I'm trying to get my head around why Oncotype seems to over-rule everything else in some of the doctor's eyes. It's a question I have for the doctors! Thank you for your input!

  • Careninnj
    Careninnj Member Posts: 53
    edited November 2018

    also just because someone does chemo doesnt mean they are going to be cancer free. Cancer can come back regardless. Ask the doctor how much chemo improves your reoccurrence rate. The oncotype papers will tell you.

  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited November 2018

    KF- I’m surprised at your score- do you know what your ER percentages were? I would’ve thought with grade 3 you’d be higher Oncotype. That said, I’ve been almost exactly where you are except mine was grade 1. My team actually encouraged me to go to Boston for a second opinion because they were all conflicted. My positive node was reclassified as a micromet from a macro met, also lvi was discovered that was missed. Apparently a lot of this pathology is very subjective. Dana Farber in Boston ordered the Oncotype for me because my MO wouldn’t due to age and node involvement. Mine also came back 14, I was 100 er+, 98% pr+.

    I opted to skip chemo because it doesn’t work as well on grade 1. With my ER percentages, anti hormonals should work better. Remember though, Oncotype only counts if you stay on antihormonals for 5 years.

    I also have 3 kids, and I can live with my choice. I know there are no guarantees, even with chemo.

    I wish you the best, whatever you choose!


  • KF2018
    KF2018 Member Posts: 22
    edited November 2018

    Cpeachymom - great question, I'm 99% ER + and 98% PR +

    What you said exactly matches two of the doctors who expressed surprise at my low score with my high grade.

    I will have to have radiation and hormonal therapy - the chemo part is the unkown right now.



  • KF2018
    KF2018 Member Posts: 22
    edited November 2018
  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2018

    I understand your position. Your oncodx score is not convincing on its own. I was in an opposite position my grade was low mitotic score low. Tumors were isolated no lymph nodes involved yet my oncodx score was 34.

    My oncologist put a lot of faith in the oncodx. The more I looked at the statistics the less convinced I became especially since I was going to take AI drugs not tamoxifen. I chose no chemo, now 7 years no cancer.

    Grade 3 and in the lymph nodes suggest chemo might get a bunch of fast growing cancer cells. My question would be "What evidence is there that chemo would kill more cancer cells potentially keeping you NED".

    If you feel like you will benefit then do the chemo.

  • KF2018
    KF2018 Member Posts: 22
    edited November 2018

    Meow13 - your case was just like mine - just the opposite! I am finding it so stressful trying to make the decision. Had a total meltdown yesterday.

    I like the question you propose - I'm adding it to my list of question for my doctor!!! Thank you!

  • Palesa2018
    Palesa2018 Member Posts: 140
    edited November 2018

    Hi KF2018, sorry that you find yourself in this position. If I may weigh in, the size, micromets and grade would push me to chemo. My Oncotype was 12 so I didn't do Chemo but sometimes I wonder about it. Cpeachymom is spot on. Oncotype means something if you are on hormonal for 5 years otherwise means nothing.



  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    I thought the oncotype was only to be used for lower grade cancers under 2cm. Sounds like it never should have been done on yours.

  • Polly413
    Polly413 Member Posts: 124
    edited November 2018

    KF218 Were you told that you have a positive node? I don't think a node with mircromets is considered a positive node. Below 3mm its micromets and only 3mm or larger is a positive node. If I am right you can forget worrying about the node reference on your pathology report. Some people who, unlike you, have a positive node are not urged to have chemo depending on other characteristics. I was grade 2 with a 7mm tumor (i.e, less than 1cm) and 1 positive node but my oncologist did not recommend chemo until the mammoprint came back "high risk". Even then I was told by her and another MO that the hormone therapy was more important for me than chemo. I chose both.) Good luck with your choice. Polly

  • KF2018
    KF2018 Member Posts: 22
    edited November 2018

    Alice - More doctors are starting to use it for micromets - even up to three nodes. There's a study going on right now about it... admittedly it's probably not common, and most of the MO's I'm working with would not have run it... but doctors do run it in cases like this... and even one of the doctors who said he would not have run it, said he would change his recommendation (from chemo to no chemo) now that he has the Onco info.

  • KF2018
    KF2018 Member Posts: 22
    edited November 2018

    Polly - great thought - officially it's listed as pN1mi, so basically it's not 0... but it's 1mi... for microscopic. You're exactly right that it's not a full-blown positive node... and some doctors treat micromets as a zero node. Even on my Oncotype results, the first page has a long part about positive nodes and it says "the newest version of the NCCN guidelines suggests that micromets should be treated similarly to node negative disease."

    I'm highly ER/PR+ so maybe that played into my low score....



  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited November 2018

    KF2018, my diagnosis is very similar to yours. My tumor was .3 mm bigger than yours, though and my met was 7mm. Small LVI. My oncologist didn’t do the Oncotype test and said if I want to do it and it will come back low she would override it. I had chemo and radiation. Better be safe than sorry, I thought. If a few years down the road cancer will come back, at least I will know I did everything I could to avoid it, but was unlucky.

  • KF2018
    KF2018 Member Posts: 22
    edited November 2018

    InnaB2018 - thank you for commenting! Wow - we are so similar! So interesting how different it can be from doctor to doctor.

  • KF2018
    KF2018 Member Posts: 22
    edited November 2018

    I'm now waiting for the big hospital to call back to answer some of my questions... it has been 24 hours and I just called and was told it could be 24-48 hours. Ugh. I'm a mess.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2018

    Up to three positive nodes, yes - I had one and my oncotype was 17, so no chemo. But it's the size (over 2cm) and grade 3 that I thought made this one not fall into the oncotype test category.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited November 2018

    Is the mammoprint test an option? I know Lisey on these boards was on the fence and used her mammaprint test to help with the decision.

  • LeesaD
    LeesaD Member Posts: 383
    edited November 2018

    KF2018- I will share my situation. I had BMX and they took out 4 sentinel nodes. Post surgical pathology showed 2 of the 4 nodes had just micromets which is less than 2 mm per node. My oncologist ordered Oncotype. My tumor was 3 cm's and I had LVI invasion also. While waiting for the Oncotype to come back I kept asking my surgeon and oncologist how do we know it hasn't spread to further nodes? They both told me with just micromets odds are slim to none that it has spread to other nodes. Not good enough for me and I pushed for ALND. My surgeon went back in and took out 14 more nodes 2 of which were fully positive (4 mm's of cancer each) so even more so than the sentinel nodes. My MO said chemo now regardless of Oncotype result. He set me up for AC+T chemo and I was ready to start when my Oncotype came back and it was a very low 3. Based on the 3 score he adjusted chemo to TC four rounds as he thought now the Adriamyacin heart risk was not worth it. So I did 4 rounds of TC and yes it's not fun but it was doable. Looking back if I had not pushed for ALND and found those 2 positive nodes, my Oncotype would've come back the 3 and I would not have had any chemo based on this very low score and I would've skipped radiation as I had the BMX and my positive nodes would still be there and I wouldn't have had any treatment at all. The thought of that still makes me nauseous. It's just what happened to me but I wanted you to be able to see that different scenarios exist. Not everyone is textbook. Best of luck in your decision.

  • KF2018
    KF2018 Member Posts: 22
    edited November 2018

    Wow LeesaD - thank you so much for sharing your story with me! Our cases are really similar - it looks like the only differences are that I'm a grade 3 and slightly higher oncotype. Wow - you really give me something to think about. You said it perfectly... different scenarios exist and not everyone is textbook. Thank you so much for sharing!!!

    Alice - OH! I'm not sure about size and grade - I know that some doctors (mine) said they wouldn't have sent for Oncotype because of my positive node. I think they still send even for large tumors... but not sure about the grade 3 part of it! I'm a special case apparently ha ha!

  • Jackster51
    Jackster51 Member Posts: 357
    edited November 2018

    Just chiming in to say that if on the fence about chemo... I found TC to be brutal. I never got my hair back after Taxotere - that was 7 years ago ...and I have crippling neuropathy in my feet, where I can not wear closed toed shoes any more or stand on my feet for any length of time. If you do decide for chemo, you may want to ask for a gentler version like CMF or even Taxol. Not meant to scare you, but offering my experience.. Tough decision you have!

  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2018

    Ugh. We need better treatment. Why is so much left up to statistics with such hard treatments as our options.

  • beeline
    beeline Member Posts: 308
    edited November 2018

    Meow13 - I couldn’t agree more.

    KF2018 - I’m so sorry you have to make this decision. Obviously for me chemo is a no-brainer and there was no point in running an Oncotype, but another factor you may want to consider is age. They often suggest stronger treatment if you’re young, esp 40 or under, in part because the cancers in younger women are often more aggressive but also you potentially have more years in which the cancer could recur.

    Also my MO used to the nhs predict tool when he thought he had to talk me into chemo. It can be useful to get a sense of the statistical impact of different treatments at 5,10 and 15 year intervals.

    https://www.predict.nhs.uk/tool

    Good luck with whatever you decide. It is entirely your choice and the most important thing as others have said is that you can live with it.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2018

    KF, did any of these oncologists refer to the TailorX trial, whose results were presented at the recent ASCO conference? This study looked at Oncotype scores in women whose tumors were hormone receptor positive and Her2 negative, and who were node-negative.

    "Another important finding was the identification of the group that did have some chemotherapy benefit—women 50 years or younger who had a Breast Recurrence Score of between 16 and 25."

    http://www.ascopost.com/News/58904


    Your score of 14 is just outside this. I would see if Mammaprint could help clarify. It bugs me that oncologists just look at the Oncotype score and don't make a nuanced recommendation. Micromets are technically considered negative, but still... That combined with the LVI and grade 3 would push me to want chemo, with a score of 14 and premenopausal. Better to do chemo for stage 2 now than for stage 4 later, would be my thinking.

    (If TailorX had been published back when I was stage 1 and premenopausal, it would have put me in the group with some chemo benefit. But at the time my 16 Oncotype said no chemo. I thought I was at greater risk than the doctors thought, and I was right. But a person should not make a decision based on one other person's story. What does your own intuition tell you? )


  • dtad
    dtad Member Posts: 2,323
    edited November 2018

    Meow13....yes! We need better treatment options! My dear cousin passed away from metastatic BC 30 years ago at the age of 38. She lived a miserable 10 years with it. Her treatment was exactly the same as it is today except she had a radical BMX. Where is all the money for research going? I just do not understand.

  • gailmary
    gailmary Member Posts: 332
    edited November 2018

    I have a family friend thats a doctor and his first response to the news of my cancer was to inform me that sometimes chemo does more harm than good and there is no guarantee with chemo either.he suggested i do my research. He failed to tell me how to do that. My story is similar except i think i hade grade 1. That would be a slower growing one right?. Two drs suggested it and one didnt. I didnt do chemo. No regrets. Even 9 yrs later with the return of A 6+ cm lesion in my humerus (upper arm bone). Still no chemo except for ibrance for only 1 yr. Instead both faslodex AND letrezole. Im feeling great with one exception. Now I cant sleep for anything. That story is for another thread.

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