Oncotype DX score 20

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Krismac318
Krismac318 Member Posts: 11
edited April 2016 in IDC (Invasive Ductal Carcinoma)

I was diagonosed with Stage 1b Mucinous cancer after my double masectomy.  It was only in my left breast and all margins were cleared.  ER/Pr + and Her2 Neg.  BRCA Neg.  Other than this cancer I am a healthy person.  my onc thought that I would just need to take tamoxifan until the Onco test came back w/a score of 20.  I am 38 years old and premenopausal.  aside from being schocked at what has happened to me in the last 2 months,  I am unsure of my decision because there is no guarentee that I am going any percentage in my favor.  I am considering just the tamoxifan and a holistic approach.  Is there any one out there is who can give me their opinion?  Thanks so much. VERY CONFUSED!!!!!! 

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  • shiramg
    shiramg Member Posts: 186
    edited October 2010

    i was in a somewhat similar position.  stage 1, clear margins, no node involvement, young, and healthy.  my onco score was 19.  i live in NY and some very good and well known oncologists told me that the onco scale is changing a bit.  its more like 16+ you should get chemo. 

    i opted to get chemo because with tamoxifen, it lowers my recurrence down to 8% over next decade.  i think thats a great statistic given that 1 out of 8 women get BC.

    i am about to go in for my second round in a few hours.  i do not regret this decision.  they will probably suggest 4 rounds of TC which is totally doable if you follow all the instructions.

    i say go for it!  do everything in your power to make sure this does not come back. message me if you have any questions.

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  • Krismac318
    Krismac318 Member Posts: 11
    edited October 2010

    Thanks fo much for responding.  My onc said it lowers my recurrence to 9% if I decide.  Just not ready to commit.  Very afraid.  Who is your onc?

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  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    My onchotype score was 24, and my Dr. said it gave me a 3% reduction. My ER is 99% so for me the Al's will do alot of good. I chose to do chemo. The way I look at it, if the beast comes back I want to be able to look back and say I did everything I could to prevent it from coming back.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited October 2010

    I was diagnosed with pure mucinous breast cancer in February of 2010.  I also had the Oncotype DX test done on my tumor and my recurrence score was 15.  Your question is a VERY tough one to answer since our type of breast cancer is so rare, the Oncotype DX test isn't specifically validated for it.  I asked Lillie Shockney that question on the Johns Hopkins Ask the Expert website.  When I received the "15" recurrence score, my oncologist thought that figure "over represented" my risk.  Rather than a 10% chance of recurrence, which coinsides with the "15", he thought my chances of recurrence with just tamoxifen was closer to 7%. 

    I did a little more research and found that the average recurrence score for mucinous breast cancer was 15.8 and that the spread was between 3 and 60.

    Lillie Shockney said I should base my treatment decision more on the experience of my oncologist.  Furthermore, since mucinous breast cancer is so rare, you might want to get a second pathology reading on it to make sure that it is mucinous and find out if it is "pure" which has a more favorable prognosis, or "mixed" which has a prognosis more in line with IDC.

    Finally, I would also consider getting a second opinion from another oncologist.  I was lucky to get three opinions since my niece is also an oncologist.

    You can also do a "search" on this website for mucinous/ colloid breast cancer and you will see a number of women who have chimed in about their treatment, including me.  There is no one size fits all treatment with this rare "favorable" breast cancer.

    Good luck and my prayers are with you and all of my breast cancer sisters.

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  • Krismac318
    Krismac318 Member Posts: 11
    edited October 2010

    This was very helpful.  The validity of the Onco test for mucinous is why I am so on the fence with my treatment.  I am not sure that I want to go through 4 rounds of chemo for maybe increasing my percentage from 13% to 9% of a recurrence. Before the Onco test came out they would have just treated me w/tamoxifan  no questions asked.  Very confusing

    Thanks again and God Bless!

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  • Nancybc
    Nancybc Member Posts: 12
    edited January 2013

    Hi Krismac 

    my situation is just like yours, so what did you decide back in 2010?

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  • Moonpie39
    Moonpie39 Member Posts: 20
    edited January 2013

    Hi, Nancy. My Oncotype score is 21. I am currently in the decision-making process about chemo and it is keeping me up alll night. If you would like to chat please send me a private message. I've spent the last few weeks researching chemotherapy and talking to everyone I can find. My oncologist told me that I receive the award for the most informed patient he's ever had on a first visit. We'll have one more meeting to discuss, but I am 99% sure at this point that I will opt out of chemo.

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  • Lee7
    Lee7 Member Posts: 657
    edited January 2013

    I saw this thread and looked because I had an Oncotype of 20.  This thread below is more current with lots of input regarding the newer guidelines for treatment.  Hope it helps.

    http://community.breastcancer.org/forum/69/topic/797869?page=2#idx_36

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  • Needanswers63
    Needanswers63 Member Posts: 2
    edited April 2016

    Hi- in a similar situation. Score is 20. Can you tell me where you treated and what you woind up doing? Thanks.

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  • Needanswers63
    Needanswers63 Member Posts: 2
    edited April 2016

    hi- in a similar situation now. How did this turn out for you? Thanks

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