Low oncotype DX score... chemo or no chemo??

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Comments

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    Very Personal

    Janet -- I see how you would be confused. I can share my story, perhaps that can help you. I was told because of my age (32), my grade (3), lympthvascular invasion and family history, I should have the chemo. Although I was stage 2a and nodes were clean (with clear margins after second surgery) I opted to have chemo because personally, I wanted to get it over with. And, I also didn't want regrets or what ifs later. I wanted to throw at the cancer everything i could. But, I had grade 3 which is very agressive. So it was easier for me to make the decision at the time. Perhaps you need to ask your Dr. what he suggests considering your age, but based on your pathology report (and I don't know if your tumor had a crazy personality to build its own path to travel, which is what I had), I would probably skip the chemo. But then again, it is hard to decide unless you're really there. So sorry, but even for me is hard. But I am happy your grade is so low and your tumor was small, and the stage was early and your nodes were clear! This is all good news and probably has the most influence on your outcome (more so than chemo).

    Good luck with what you decide. May God guide you to make the right decision for yourself.

     

    HUGS

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member

    Here's a stupid question:
    Can you change your mind down the road? I simply never thought about this before. Everyone gets chemo right away, but what if you are undecided? If having or not having chemo is up to you, how long do you have to make up your mind? Can you decide you want chemo say 6 months to a year after diagnosis? I assume it's optimal to do it early on, but what if you're really on the fence and then you're not?

    Suzanne

    answer to your question

    Suzanne -- You do have a window in which chemo would be the most beneficial. I know because when I was dx, I wanted to harvest my eggs and so my Onco told me that I had 3 months after my dx to have an effective outcome with the chemo and so I followed her orders. I harvested my eggs, and 3 months later had my first chemo.

  • Patti1967
    Patti1967 Member Posts: 186

    I had my first onco visit
    I had my first onco visit today and he is just now preparing to send off my pathology for an Oncotype. So, I have not reached the point where you are yet, but I can tell you that he told me if I have to have chemo (I have same stats as you except mine is grade 3) it would be taxotere and cytoxan are by no means a picnic, but he described them as one of the less rigorous treatments and very doable. He told me I would probably even just need to be off on a Friday for treatment and probably be back to my teaching job on the following Monday each time. So, just something to consider if she is pushing chemo for you.

    Nancy

    I had those chemo drugs, mine

    I had those chemo drugs, mine were always on Mondays with a shot of Nulesta on Tuesday.  I was fine, except being tired until Wed eve and then it was no pinic for sure.  I hope he's right and you can return to work on Monday after Friday chemo, there's no way I could have.  We are all different that's for sure:) 

    Patti

  • SherryHJ
    SherryHJ Member Posts: 5 Member
    onco dx

    I thought that it meant I wouldn't have to have radiation or chemo.  I was wrong.  I had a onco dx score of10 with a slow growing tumor, ER+, HER-, but it was 2.5 cm which pushed it to a 2a. 

    I had a lumpectomy and 40 radiation treatments.  My nodes were clear, thank God!

    Now, I get recommendations to have my breasts removed from my MD, to have my ovaries removed from my oncologist, and my OB says no, in order to cut my risks further. 

    I am freaking out.  I thought that not having it in my nodes and having a low OncoDX score meant I had a low rate of recurrence.  BTW:  I can't take Tamoxifen at all!  Life threatening for me.

  • SherryHJ
    SherryHJ Member Posts: 5 Member
    gadawn said:

    Similar situation...

    We have similar situations, but it has been 2 years since you posted your topic. What did you finally do?

    I was diagnosed with invasive ductal carcinoma in February 2013, had a single mastectomy on March 11, and am waiting for my Oncotype test results. They will be in on April 10th. Cancer was Stage 2B, Grade 3, +ER, +PR, -HER2. My oncologist immediately recommended Chemo and hormone therapy. I am against both. When I asked her what the statistics/percentages of it recurring with chemo or without chemo, she didn't have any answers. She reluctantly offered the Oncotype DX test and made sure I understood it was NOT Standard procedure AND said her recommendations would not change when the test results came back. I was relieved there is a test and immediately agreed to have it done. I am looking into alternative cancer treatment centers and have found one that I believe I will be going to get a second opinion. Oasis of Hope in CA. I am not convinced that aggressive chemo and hormone therapy is the best option for me or most women with breast cancer. I'm extremely impressed with the treatments that are offered at Oasis of Hope...low-dose chemo using insulin potentiated therapy along with high-dose IV Vitamin C, etc. They also treat the whole person and are a Christian-based clinic. They teach you how to eat to prevent recurrence. Too many women just fall in line with the traditional treament plans and don't realize there are other options out there.

    whole person treatment

    I agree with you.  I am not so sure that the treatments are better than removing the cancer and beginning a healthy regimen of good diet and exercise.  I am totally lost as to what to do since I am 49, not even in pre-menopausal and can't take Tamoxifen.

  • SherryHJ
    SherryHJ Member Posts: 5 Member
    gadawn said:

    Similar situation...

    We have similar situations, but it has been 2 years since you posted your topic. What did you finally do?

    I was diagnosed with invasive ductal carcinoma in February 2013, had a single mastectomy on March 11, and am waiting for my Oncotype test results. They will be in on April 10th. Cancer was Stage 2B, Grade 3, +ER, +PR, -HER2. My oncologist immediately recommended Chemo and hormone therapy. I am against both. When I asked her what the statistics/percentages of it recurring with chemo or without chemo, she didn't have any answers. She reluctantly offered the Oncotype DX test and made sure I understood it was NOT Standard procedure AND said her recommendations would not change when the test results came back. I was relieved there is a test and immediately agreed to have it done. I am looking into alternative cancer treatment centers and have found one that I believe I will be going to get a second opinion. Oasis of Hope in CA. I am not convinced that aggressive chemo and hormone therapy is the best option for me or most women with breast cancer. I'm extremely impressed with the treatments that are offered at Oasis of Hope...low-dose chemo using insulin potentiated therapy along with high-dose IV Vitamin C, etc. They also treat the whole person and are a Christian-based clinic. They teach you how to eat to prevent recurrence. Too many women just fall in line with the traditional treament plans and don't realize there are other options out there.

    whole person treatment

    I agree with you.  I am not so sure that the treatments are better than removing the cancer and beginning a healthy regimen of good diet and exercise.  I am totally lost as to what to do since I am 49, not even in pre-menopausal and can't take Tamoxifen.

  • Josie21
    Josie21 Member Posts: 382 Member
    SherryHJ said:

    onco dx

    I thought that it meant I wouldn't have to have radiation or chemo.  I was wrong.  I had a onco dx score of10 with a slow growing tumor, ER+, HER-, but it was 2.5 cm which pushed it to a 2a. 

    I had a lumpectomy and 40 radiation treatments.  My nodes were clear, thank God!

    Now, I get recommendations to have my breasts removed from my MD, to have my ovaries removed from my oncologist, and my OB says no, in order to cut my risks further. 

    I am freaking out.  I thought that not having it in my nodes and having a low OncoDX score meant I had a low rate of recurrence.  BTW:  I can't take Tamoxifen at all!  Life threatening for me.

    Hi SherryHJ

    I was stage 1, ER+, HER-, 1.9cm tumor, Oncotype score 13, and BRCA gene with a mutation of unknown significance (whatever that means).  One oncologist said do chemo and the other said no way.  I had a bilateral mastectomy (BM) because I had DCIS in the previous breast 3 years prior.  I chose no chemo because of the oncotype test and because of heart problems in my family.  I did however go on tamoxifen afterwards.  Maybe not being able to take that is why they are suggesting different treatments.  I did not have the radiation because I had the BM done.  Two years after the BM I developed ovarian cysts and my gynecologist wanted me to have a hysterectomy.  She said my ovaries were shot from the tamoxifen anyway and she did not want to take any chances.  Doing that made me have to switch over to Aromasin instead of tamoxifen.

    Everyone is different and so are doctors.  One says one thing and another says something different.  Are you negative for the BRCA gene?  If so, it Is really your decision on what to do next.  I would get a second opinion from another oncologist.  

    We are very lucky that we had early stage, slow growing tumors, but with that comes a lot of choices on treatment plans that we need to make.  I still hope I made the right choice about not doing chemo.  Whatever you chose, you have to live with your choice and try not to look back.

    Feel free to personal message me if you want.  I know what you are going through.  It's not easy to make such big decisions.

    Hugs,

    Ginny

  • Pink Rose
    Pink Rose Member Posts: 493
    SherryHJ said:

    onco dx

    I thought that it meant I wouldn't have to have radiation or chemo.  I was wrong.  I had a onco dx score of10 with a slow growing tumor, ER+, HER-, but it was 2.5 cm which pushed it to a 2a. 

    I had a lumpectomy and 40 radiation treatments.  My nodes were clear, thank God!

    Now, I get recommendations to have my breasts removed from my MD, to have my ovaries removed from my oncologist, and my OB says no, in order to cut my risks further. 

    I am freaking out.  I thought that not having it in my nodes and having a low OncoDX score meant I had a low rate of recurrence.  BTW:  I can't take Tamoxifen at all!  Life threatening for me.

    That seems too aggressive to

    That seems too aggressive to me Sherry.  Why remove your breasts and your ovaries?  Your ovaries do a lot of good for your body.  And with your nodes clear and a low Onco number..why chemo? 

  • KKuziel
    KKuziel Member Posts: 1
    Oncotype score of 22

    Two months ago I had an oncotype test. I had no lymph node involvement ER/PR+ HER2-, tumor size less than 1 cm. Lumpectomy, Stage 1b, grade 2.  I am 57. I did 33 rads, as was the initial suggestion, to be followed by hormone therapy. Tow weeks ago myoncologist said he would like to send out for a mammo print test, which only gives a high or low determination. I was graded at low intermediate on oncotype test. Now he's suggesting chemo based on the mamma print test and is ignoring the oncotype test. I'm beside myself trying to figure out what to do. Anyone with similar issues. 

  • jlharris
    jlharris Member Posts: 47
    My treatment choice

    I was diagnosed with stage 2b (one node positive with small amount). I had the Oncotype Score test done and it came back as a 7 with 6% chance of recurrence if I was to not have any treatment. I considered in participating in the clinical trial but backed out. My onco recommends chemo/hormone therapy but I am not going to do chemo just hormone therapy after my radiation treatments, starting next week (33 treatments). With the clinical trial you are randomly choosen for one of the two types of treatment. 1) Chemo/hormone 2) Hormone only. So, my thinking was that if I was choosen for the hormone only then why not just do the hormone only treatment and since my oncotype score was so low this is why I made my decision.

    I wish you and everyone else for the best treatment that you can get.

    JeniferCool