Chemo benefit (%) based on your Oncotype DX score

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Comments

  • thisiknow
    thisiknow Member Posts: 134
    edited December 2019

    Your info is most helpful, Beesie. It just seems there's too little difference in benefits to choose one AI over another. So should I choose one based on what SE's to avoid instead?

    Could there be benefits to using one AI over another in the particular case of DCIS ...or IDC ...or ILC ...or other breast cancers.


  • mac5
    mac5 Member Posts: 135
    edited December 2019

    Mika, for another comparison...

    My Oncotype Score is 8. My Recurrence % is 5%. I was told the chance of chemotherapy working on ILC was less than 1%.

    The second part of the story is my MO told me the TailorX Study eliminated women who had a recurrence of BC and those whose Tumor was greater than 2cm. I'm not “Staged" at Metastatic because there is no observable connection between my freakin huge tumor and the Cancer in my chest wall, but the assumption is its the same type.

    Because I had such terrible SE's from the AI's the first time, I decided that I would only accept Chemotherapy as neoadjuvant therapy. She discussed Carboplatin, but we decided on CMF for 3 Treatments. I'll have the 3rd round December 19th and another Breast MRI on December 27th to determine if chemo has been effective. If it has, I'll have MX and probably Radiation. If it hasn't worked, then President Radiation then MX.

    The AI Treatment was prescribed for a year and then MX. My tumor was growing quickly because it was visible to me. I wasn't willing to wait.

    The CMF is working so far. Minuscule effect so far but effect

    Let me add, I’m 69 years old with ILC. My first diagnosis was IDC and DCIS at age 60. My Recurrence Rate then was 5%.

  • MikaMika
    MikaMika Member Posts: 342
    edited December 2019

    mac5,

    Thank you for sharing your experience.

    Unfortunately, two oncologists that I spoke to don't prescribe CMF regime anymore. So, light chemo is out of game.

  • mac5
    mac5 Member Posts: 135
    edited December 2019

    Mika I had Abraxane and FAC the first time around. The CMF is harder

  • MikaMika
    MikaMika Member Posts: 342
    edited December 2019

    mac5,

    I'm sorry, I thought it is the lightest possible chemo regime in terms of side effects. It seems like I was wrong.

  • Brilee76
    Brilee76 Member Posts: 227
    edited December 2019

    My MO had the Endopredict test done rather than Oncotype. My score was 4.5 which is high risk. My MO said I had a 28% chance of recurrence. Chemo would lower that chance to 15% so my MO suggested it. I had 4 rounds of TC.

  • MikaMika
    MikaMika Member Posts: 342
    edited December 2019

    Brilee76,

    Thank you for your response!

    May I ask you, what was you Ki67? Did you have intravascular invasion?

    By "reccurence" you mean distant or local?

    Thank you!


  • JRNJ
    JRNJ Member Posts: 573
    edited December 2019

    Brilee76, It’s so frustrating how different drs do different things leaving me constantly questioning if I’ve done enough. My dx looks like yours. I asked about starting hormone therapy early and I was told it waits until the end. And I had to fight for chemo due to oncotype. My ki67 is 18. Miotic is 1. Is yours higher

  • Brilee76
    Brilee76 Member Posts: 227
    edited December 2019

    Here are my test results:

    EndoPredict Breast Cancer Gene Expression Profile
    - EPClin Risk Score: 4.5 (high risk)
    - 12-Gene Molecular Score: 7.9
    - Tumor Stage: pT2
    - Nodal Status: pN1mi


    RESULTS:
    Breast, left, 1 o'clock, ultrasound-guided core needle biopsy
    Tumor type: Breast carcinoma
    Primary vs. Metastatic: Primary
    ESTROGEN RECEPTOR: POSITIVE
    - Nuclear Staining: 85%
    - Average intensity of staining: strong
    PROGESTERONE RECEPTOR: POSITIVE
    - Nuclear Staining: 75%
    - Average intensity of staining: strong
    KI-67: LOW
    - Nuclear Staining: 8%
    HER2 PROTEIN EXPRESSION: NEGATIVE (Score 1+)
    - Staining pattern: Incomplete membrane staining that is
    faint/barely perceptible and in greater than 10% of tumor cells


    - Lymph Nodes
    - Regional Lymph Nodes: Involved by tumor cells
    - Number of Lymph Nodes with Macrometastases: 0
    - Number of Lymph Nodes with Micrometastases: 1
    - Size of Largest Metastatic Deposit (Millimeters): 0.26 mm
    - Extranodal Extension: Not identified
    - Number of Lymph Nodes Examined: 3
    - Number of Sentinel Nodes Examined: 3
    - Pathologic Stage Classification (pTNM, AJCC 8th Edition)
    - TNM Descriptors: Not applicable
    - Primary Tumor (pT): pT2
    - Regional Lymph Nodes (pN)
    - Modifier: (sn): Only sentinel node(s) evaluated.
    - Category (pN): pN1mi
    - Distant Metastasis (pM): Not applicable - pM cannot be
    - determined from the submitted
    - specimen(s)


    The micrometastases was found on the outside of the lymph node rather than inside so no intravascular invasion per my MO.

  • Brilee76
    Brilee76 Member Posts: 227
    edited December 2019

    I also have a BRCA2 mutation as does my mother. It is not the known mutation. My mother had 2 different types of breast cancer in each breast last year. She rang the cancer free bell last December (2018).

  • MikaMika
    MikaMika Member Posts: 342
    edited December 2019

    Brilee76,

    Thank you so much for the update!


  • Brilee76
    Brilee76 Member Posts: 227
    edited December 2019

    MikaMika - I'm gonna guess she meant distant since I have no breast tissue left?

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2019

    Brilee, even after a MX, a local recurrence remains possible. It's impossible for the surgeon to scrape away every particle of breast tissue, so either a recurrence or even a new primary breast cancer could still develop after a MX. Usually if this happens, the cancer develops against the chest wall, or up against the skin.

    Generally for early stage breast cancers the local recurrence risk after a MX is about 1% -2% but the risk could be higher for more aggressive cancers or if the surgical margins are close or if the cancer is node positive and/or very large.

    That said, both the Oncotype test and EndoPredict specifically measure distant recurrence risk. I know that the Oncotype test does not provide any information at all about local recurrence risk and I believe this is also the case with EndoPredict.

    Here is a copy of an EndoPredict report that I found on their website. I've circled in red where it indicates that the results are specific to distant recurrence.

    image

  • Brilee76
    Brilee76 Member Posts: 227
    edited December 2019

    Thanks Beesie! :) I see why you get so many compliments on your posts.

  • MikaMika
    MikaMika Member Posts: 342
    edited December 2019

    Beesie, Brilee76,

    Thank you so much!





  • Spoonie77
    Spoonie77 Member Posts: 925
    edited December 2019

    Following along. I had not heard of the Endopredict test at all until this thread. I had a Oncotype and Mammoprint done originally due to wanting to be sure of my decision.

    Anyone know the differences between these tests? Do they all test the same thing but done by different companies? Thanks in advance.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2019

    Mika

    for what it is worth- I had an oncotype in the "gray area" which was, as the time between 18-30-- I think mine was in the mid 20's-- did 4 rounds of AC only with a lumpectomy radiation and an AI and ovarian suppression (I could not take tamoxifen). As Beesie says, it is all about your own tolerance. At the time of my dx, A/C was the standard-- I was heartened to see in the Tailor x trial that my numbers would have warranted chemo--- reaffirmed my decision. Also, last on visit they ran the numbers for the recurrence and mine were low--which also gave me reassurrance that I did the right thing-- it is hard to know in the moment--but you have data, doctors and your own gut feeling about what will work for you---- remember, nothing is permanent, you could start then stop-- try one drug, then move to another-- there are many more options available now---- best of luck!


  • MikaMika
    MikaMika Member Posts: 342
    edited December 2019

    momand2kids,

    Thank you so much for your response and support!

  • windingshores
    windingshores Member Posts: 704
    edited December 2019

    MikaMika, just want to say that I ended up getting 4 opinions until I felt comfortable. A lot of my testing was "discordant" and even contradictory. I would just suggest that you keep going, getting opinions and info from docs, until you feel safe about your decision. My last doc even retested some things.

    Oncotype 8, but grade 2 or 3 (depending on hospital), ki67% 18, focal LVI (lyphatic), ER/PR+ and HER2- (had a positive, negative and equivocal and last doc did a retest with more cells)

  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited December 2019

    I've seen a lot of mention of the RSPC calculator on this thread. Is that something that is new? I had my Oncotype done about 9 months ago and have never heard of the RSPC calculator. My Oncotype was a 13 with a recurrence score of 13% as well. No number given for chemotherapy benefit, only "no apparent benefit," because of the node positive status (which I also just learned on this thread from JRNJ).

    I've often wondered about the accuracy of the Oncotype for my individual situation. My understanding is that the Tailorrx study excluded tumors over 2cm. Mine was multifocal with the largest at 4 cm. Also, as ShetlandPony noted, is is not clear how well it predicts recurrence in ILC vs IDC. I was 48 at the time of diagnosis.

    I wonder if it is worth asking my MO to run the calculator at this point? I remember him being a bit puzzled by my results (he thought the recurrence rate should be lower), and it seems like he would've run it then had he known about it at the time.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2019

    The Oncotype RSPC model is not new - the first mention of it on this site was in 2011 - but it seems to be very rarely used. I don't know why that is. It takes 2 minutes to run, and doesn't it make sense to try to make the Oncotype results more specific to the individual?

    The report that everyone receives with their Oncotype score gives the same % metastatic risk to everyone who has the same score - well, there is the node-negative version and the node-positive version, and there is now a 50 and under score vs. an over age 50 score. But if two people both are node-negative and both have a 29 score, and one is aged 65 with an 8mm grade 1 tumor and will be taking an AI, and the other is aged 51 with a 3.8mm grade 3 tumor and will be taking Tamoxifen, isn't it reasonable to assume that the metastatic risk may be different for these two patients? That's what the RSPC would tell us.

    Whatjusthappened, at this point it's too late to change your treatment plan so any new information might just cause you concern. Is that worth it to you?


  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited December 2019

    Bessie, that's a good point- I don't know if it would be worth it not. I have a science background and am the kind of person that likes to have all the information. It bugs me that there is more information I could've gotten, irrational as that may be. I certainly wouldn't go back and push for chemo or anything, but that knowledge could be helpful for future decisions (whether or not to stay on AI's for instance).



  • JRNJ
    JRNJ Member Posts: 573
    edited December 2019

    What just happened also note Tailorx is a node negative study. Node positive is still ongoing. I got both reports because they made a mistake and submitted me as negative. But if it makes you feel better the Rutgers dr said no chemo for dx like ours even with node positive. But I was determined to do chemo and Sloan said yes. I agree that another report might just worry you if there is no chance of changing treatment. Unless chemo is a possibility. It's really not perfect science either way. I looked up trends data and was surprised to see the metastatic rate has not changed at all In 50 years. And people with chemo still go metastatic. So it may just be predetermined. And I'm a little miserable now going through it. I’m an OCDengineer and still have a hard time believing the “limited” data studies. I'm going to get ovaries removed too. How are you feeling after that? Hot flashes?

  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited December 2019

    JRNJ, I think with your diagnosis I would've pushed for chemo too, but I'm sorry that you're having a hard time going through it. How long do you have left? I don't regret not getting it, since almost everything I've read leads me to believe it wouldn't be that effective anyway.

    Having the ovaries removed was not too bad. I did get slammed into menopause, and started Arimidex a week later. The combination of those two things has been hard. The hot flashes were pretty bad, along with some other SE's. I'm on a break from the Arimidex right now, so the hot flashes are still there but not as intense.


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