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Stage IIB Positive in Two Nodes Treatment Questions

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debbie_r_mi
debbie_r_mi Member Posts: 13

I am hoping to get feedback from others on treatment decisions for someone in my situation. Diagnosed at 51 years old, I am stage 2B, with two positive axillary nodes. I had left mastectomy with axillary node dissection four weeks ago. Post surgical pathology shows left breast invasive carcinoma with mixed ductal and lobular features (2.6 cm tumor) along with ductal carcinoma in situ, and intermediate and metastatic carcinoma in two of five lymph nodes examined. Two positive nodes showed macrometastasis and extranodal extension present. Overall tumor grade was 2. I am ER/PR positive, HER2 negative, post menopausal, and I don't have genetic markers for breast cancer but have had some family history of it.

Initially I was told I would have chemo, radiation (to nodes only) and endocrine therapy. Now there is a question about whether chemo is beneficial and whether radiation even to nodes is wise due to my auto immune condition, Scleroderma. I am waiting Oncotype results and have set up a second opinion appointment. I do not want to go through chemo but I wonder if I bypass chemo and can't have the radiation due to the auto immune condition what risk does that put me at with recurrence down the road since cancer was in two nodes? What choices have others made? From what I have read, ER/PR positive, HER2 negative early diagnosis patients do well first five years. However, it appears recurrence in years 6-15 is a concern. The RXPonder study (taking into account OncoType score) from what I can tell, is looking at statistics for first five years and then estimates the rest of the years.

Any feedback on what decisions others have made as far as skipping chemo and radiation based solely on Oncotype score would be appreciated.

Thanks.

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  • ctmbsikia
    ctmbsikia Member Posts: 758
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    Hi Sorry you are here. I also had mixed diagnosis. I only had a micromet in 1 sentinel node, 2nd one was negative so I did not have any aux. nodes taken. I think you can't really decide or know the percentages until you have that oncotype score back. It's good you are having 2 opinions. I would also consult with a radiation oncologist as well. Hope you can skip chemo too. Let us know how it goes.

  • wondering44
    wondering44 Member Posts: 261
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    Debbie_R_MI

    Sorry, you have to go through these decisions with additional concerns for treatment options for other reasons.

    I initially was told chemo and rads. After the Oncotype came back at an 8, two MOs explained that doing chemo more than likely would do more harm than good to my body without changing the cancer outcome. I understood with the explanations that the new research came out on 12/2020. Chemo can risk long-term damage to the body, and if it can be avoided, it should be. I had to assume the researchers and doctors knew the best path. I cross my fingers they are correct.

    I did opt to do six weeks of radiation. I had more fear of not doing it than the SEs that could come with the treatment. I do not have any underlying conditions, so my decision was probably much more manageable than yours.

    I think your decision to get a second opinion is an excellent way to go. If you get the same information from both MOs/ROs, it may alleviate some of the worries in the treatments you choose.

    I wish you the very best in your care and health.

  • brittonkb
    brittonkb Member Posts: 81
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    I was also Stage IIB. 4.5 cm IDC with 3 nodes positive including one with ENE. I was 48 at diagnosis. Despite both a low oncotype (9) and mammaprint at low risk, my doctors at Ohio State preferred I go forward with chemo (AC-T) and radiation. My doctor cited a study (I can't remember it off the top of my head) that he thought was too new to risk not taking an aggressive approach due to my age and positive nodes especially with ENE. Everyone is different of course and who knows if I'll ever have a recurrence, but I am really glad I threw everything at it that I could.

  • debbie_r_mi
    debbie_r_mi Member Posts: 13
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    Thanks everyone for the responses. It's good to hear from those experiencing similar situations. I think the study mentioned is the RxPonder study which was released Dec 2020. From what I've read, the OncoType test in the past was only used as a tool with node negative patients. However, in Dec2020, they released results showing those with 1-3 nodes may be able to use the results as well to avoid chemo. It seems like such a new study, not a large study size, and I don't think they have accurate data yet at 6+ years and what affect not having chemo would have for recurrence. It makes me nervous to forgo chemo based on Oncotype alone, especially if I can't get the radiation. I certainly don't want chemo if I don't need it but would rather throw everything at it now (as someone mentioned) at my age rather than when I am older. I guess we just don't get clear cut answers with this cancer sometimes. Thanks again everyone.

  • lillyishere
    lillyishere Member Posts: 775
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    Debbie, I am stage 2 with 2 nodes positive. I asked 4 different opinions and I was told no chemo since it is lobular and no radiation for some reason. I will be in letrozole for a very long time for sure. I had 5 nodes removed, and I regret not asking to have them all removed. There are guidelines but each individual is unique and guidelines keep changing every few years.

  • tsquare
    tsquare Member Posts: 19
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    @debbie_r_mi

    Hello! I am also hoping to get feedback from others on treatment decisions for someone in my situation. I have some similarities with your case, and was wondering if you can kindly advise me on what might be coming and what to expect maybe.....

    I was diagnosed with ILC stage 2 with 3 positive axillary nodes. I had left mastectomy (2.5 cm tumor) and three positive nodes showed macrometastasis and extranodal extension present.

    I am waiting for appointment with oncologist. Meanwhile I am trying to learn about different treatments and what to ask and how I can have better knowledge of what is coming so I can make decisions or at least understand different options if any.

    I would appreciate any feedback from anyone experiencing similar situation. Thank you.

  • debbie_r_mi
    debbie_r_mi Member Posts: 13
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    Hi tsquare,

    From what I read, everyone is different but I know having the Oncotype test done was really beneficial to me. It analyzes your tumor and comes up with a score. They use the score to determine if chemotherapy is beneficial for you. The type of cancer (ER/PR positive, triple negative, inflammatory, etc) also plays a role in treatment plans. I had genetic testing as well which would also be helpful. In my case, my Oncotype score was 11 so the risk of chemo outweighs the benefit I would get. But, the score assumed I would get radiation. I was set to get radiation but then due to an auto immune condition I have, it was decided radiation was not a good idea. Too risky for that condition and easier to treat a recurrence of breast cancer than a problem with my auto immune condition, which would be lung damage from radiation treatment.

    I can only suggest that you get a second opinion on treatment if you are not comfortable with what the first oncologist says. I got a second opinion about the chemo and then radiation. To this day, my surgeon didn't agree with the no chemo approach but like I said, I had four different medical oncologist advise that based on the score, it would not be beneficial. Ultimately it was my decision on what I wanted to do since I had cancer in two nodes. There are so many studies going on and research that the treatment plans are changing all the time. My oncologist told me if I was diagnosed a year earlier, there would have been no question I would have been sent for chemo since it was in two lymph nodes. But now, they are advising against chemo if Oncotype score is low enough and only 1-3 nodes involved. Your oncologist should be able to tell you about that study. I have read about a lot of women with similar stage, cancer type and node involvement and many have also skipped the chemo but I highly recommend you get the Oncotype test done. They don't always do it automatically for you. I had to ask for it.

    I skipped chemo and radiation and I am on an aromatase inhibitor, which will be for at least five years. I wish you the best!


  • pebblesv
    pebblesv Member Posts: 486
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    I was diagnosed in 2018 and the lumpectomy and sentinel node biopsy revealed 2 positive nodes as well. Today I received another clear mammogram, almost 4 years after this journey began! I’m still in this fight but if it helps, this has been my path so far…

    - Did the surgery (lumpectomy, sentinel node biopsy)

    - Insisted on an Oncotype DX test

    - Did not do chemo after Oncotype test came out saying chemo would provide no benefit in my case (Oncotype score 21)

    - Refused a full axillary node dissection due to the high risk of lymphedema and studies I discovered showing survival rates were about the same whether you do axillary vs sentinel node dissection - actually slightly better for those who did just the sentinel node biopsy

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5446737/

    - Did a full round of radiation

    - Agreed to and am still taking the hormone therapy which in my case is tamoxifen - I kind of see tamoxifen as “my ticket out of chemo” so as SEs are also minimal for me with tamoxifen, I begrudgingly continue to take it for the recommended 5 years

    I hope this helps! Everybody had different paths and you just have to make the decision that’s right for you. As you can see in my path, I agreed to certain treatments, had to insist on some things like the Oncotype test (we have to be our own advocates on this journey!) and also refused certain treatments. It’s all a balance of what’s right for you.