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ROLL CALL ---- High risk oncodx and chose no chemotherapy

meow13
meow13 Member Posts: 1,363

Just trying to find out if the following:

(People with hisk oncodx and no chemo)

Oncodx number

Number of years NED


Tagged:

Comments

  • meow13
    meow13 Member Posts: 1,363
    edited November 2016

    No chemo but did 4 years AI.

    Oncodx 34

    NED 5 years.

  • meow13
    meow13 Member Posts: 1,363
    edited November 2016

    For people high oncodx and chose no chemo

    How long NED

  • meow13
    meow13 Member Posts: 1,363
    edited November 2016

    testing

  • meow13
    meow13 Member Posts: 1,363
    edited November 2016

    ok here is my post

  • adelozier
    adelozier Member Posts: 30
    edited December 2019

    following

  • meow13
    meow13 Member Posts: 1,363
    edited May 2021

    34, year 10 ned

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited May 2021

    Yay!! to 10 years NED. Nice to see you back Meow13!


  • sissy60
    sissy60 Member Posts: 11
    edited June 2021

    hello meow 13!!

    What a strange year or so we’ve had! UK kind of opened up a bit now but who knows!?

    Fantastic - 10 years!! Excellent

    Anyway as you might recall I was in a state about having chemo as I’d been told I didn’t need it until my onco score of 30. I didn’t do it and it’s 2 and a half years out and ok. I’m thinking of coming off the hormone therapy as tamoxifen has caused thickening in womb lining and letrozole looks punishing!

    It’s now clear that even with an oncotype score like that the latest studies show having chemo makes no difference and so we were right to question!

    I hope you are doing ok and sending very best wishes to you across the pond!!! You were such a help to me will always be grateful…

  • sissy60
    sissy60 Member Posts: 11
    edited June 2021

    two and a half years:)

  • avag
    avag Member Posts: 15
    edited June 2022

    I had an onco score of 44 and did chemo and 8 months into tamoxifen. I also do herbs from George Wong. My oncologist started me on 20mg, but I recently went down to 15 and am considering going down further to 10mg as I am really struggling, mentally and physically.

  • odyssey305
    odyssey305 Member Posts: 37
    edited June 2022

    10 years NED, fabulous! Following..

  • meow13
    meow13 Member Posts: 1,363
    edited August 2022

    34, on 11th year NED

  • thec
    thec Member Posts: 12
    edited February 21

    I would love to know also how many people who chose no chemo with a high onco score and how they are doing now. I have a score of 26 and I am choosing no chemo. ER/PR+, her2- Stage 1, 1.5 cm, grade 3 tumor. I start radiation next Wednesday.

    update: 10 months out, mammo and lung scan both clear. I chose no chemo. I have been on letrozole since August and did a month of radiation.

  • sissy60
    sissy60 Member Posts: 11

    I chose no chemo. Felt obvious not to do it after much research. Onco score of 30. Estrogen positive. Stage1/2 grade 2

    5 years now ok.

    still anxious ! Good luck

    sissy60

  • sissy60
    sissy60 Member Posts: 11

    Also a friend of mine just had a recurrence after 7 years - and her onco score was 8. She was led to assume she’d be fine. Oncotype isn’t definitive is it?

    sissy60

  • jenna1220x
    jenna1220x Member Posts: 10

    Hi! Oncotype 37. Chose no chemo. Instead ovarian suppression and AI. I'm 39 years old. Can someone please tell me what the current research is about chemo benefit and high oncotype? It didnt seem right to me to choose chemo. I am highly estrogen positive with low progesterone positive and a mitotic rate of 1. My oncologist today basically told me because I didnt choose chemo, I might not be here to see my 2 year old daughter grow up. I am beyond upset and scared :(

  • kaynotrealname
    kaynotrealname Member Posts: 438

    Jenna, the current research still shows tremendous benefit for those with a high oncotype score. Breast cancer, before even being able to be detected by scan or touch, tend to shed through surrounding blood vessels. The more aggressive the tumor which is defined by a high oncotype, the more likely that is to have happened. Chemo goes after those errant cells killing them before they have a chance to attach to a distant organ and grow. Because at that point the cancer is no longer curable. It is up to you to decide whether the risks of chemo outweigh the rewards but your oncologist gave you an accurate assessment. There is no guarantee either way of course but those who have chemo if needed, statistically speaking do much better than those who don't.

  • jenna1220x
    jenna1220x Member Posts: 10

    Thank you kaynotrealname. It's just frustrating when I have the surgeon, radiation oncologist, and medical oncologist telling me different things. The surgeon told me that in premenopausal women they aren't sure if the benefits of chemo are due to the damage to the ovaries or the actual chemo. Then the oncologist said I was making a reasonable decision to do ovarian suppression and an AI instead of just tamoxifen if I didn't want to do chemo. That's what I decided to do, and yesterday he told me to enjoy the milestones I do get to see with my daughter because my oncotype score suggests aggressive breast cancer.

  • jenna1220x
    jenna1220x Member Posts: 10

    I see lots of people with low oncoscores having recurrences as well as people who did aggressive chemo regimens. And then I see women with high oncoscores who chose no chemo who are still years out without a recurrence. I guess there's just no guarantees when it comes to cancer.

  • kaynotrealname
    kaynotrealname Member Posts: 438

    No there are no guarantees unfortunately. Just statistics that suggest what would be most beneficial. I had no lymph node involvement or LVI and an intermediate onco score that because I was under 50 suggested chemo was beneficial. I did it. It wasn't fun but I got through it and recovered fully. And I know if I had a recurrence I'd have no regrets. I think that's an important thing.

  • kaynotrealname
    kaynotrealname Member Posts: 438

    "The surgeon told me that in premenopausal women they aren't sure if the benefits of chemo are due to the damage to the ovaries or the actual chemo."

    I thought I should mention that this only applies to women whose oncotype score is between 21 to 25. For premenopausal women who score over a 25, chemo is always beneficial not because it affects the ovaries but because it kills aggressive breast cancer cells. I had a 23 score and still chose chemo though. I wanted to take as few chances as possible.

  • jenna1220x
    jenna1220x Member Posts: 10

    Thank you so much for your reply and I'm so happy you're doing well and recovered fully from chemo. I've been told so many different things from my doctors I guess I am really confused. The surgeon said the mitotic rate showed it was slow growing, and if chemo is for rapidly dividing cells, I dont understand how chemo would work. I also don't fully understand the oncotype test. If it says greater than 15 percent benefit of chemo ... is that specifically for me or a whole group of people that scored high? And how many out of 100 people actually benefit from chemo with high scores? Thank you for your feedback

  • kaynotrealname
    kaynotrealname Member Posts: 438

    Mitotic rate is subjective based on a lab person literally measuring. Different labs have different results. It's why most oncologists now base chemo on an oncotype score. And the 15% is for a group of people. No one can tell you what it will do for you personally. They can just tell you what it does for a bunch of people with your score.

  • jenna1220x
    jenna1220x Member Posts: 10

    Thank you so much

  • moderators
    moderators Posts: 8,539

    Hi @jenna1220x, and welcome again to our Community. We know understanding the risk and benefits of chemo is challenging, but you're receiving great information here. We wanted to also share with you this link you might find helpful from our site:

    We hope this helps. Let us know how else we can support you!

    —The Mods