oncotypeDx score of 20

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Fabu
Fabu Member Posts: 29
edited March 2014 in Breast Cancer #1
Hi all, I'm new to the board. I had a double mas on 2/26/10 with a diep flap. One flap took, one did not. Therefore, had one expander put in. Fun stuff!!

Anyhoo, Just got my oncotypedx score back. I had stage 1, grade 3, ER +, PR +, HER2-. My score was 20 which is in the intermediate range. Anyone been in this situation? My oncologist said he would be comfortable would me just taking tamixofen for 5 years but also said I had the option of 4 cycles of chemo and then 5 years of tamixofen. I'm 40 y.o. by the way. any thoughts?

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  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
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    My Oncotype was also in the intermediate range
    and I opted for the chemo. The Oncotype report showed it would increase my chances by about 4%, which was enough for me. I was also given the option of joining a clinical trial which would mean I would have a 50/50 chance of being given chemo, but I wanted to make the decision for myself, and have not regretted it.

    My feeling was that I could withstand the chemo better now when I was (relatively) young than if the cancer recurred at a later date. I just wanted to give myself the best possible chance of never having to go through this again. For me the chemo was not bad at all, and I'm now almost done with my radiation and loooking forward to the new normal, whatever that brings with it.

    I wish you the best in whatever you decide. It is a very personal decision to make.

    Please keep us posted on how you're doing and come back as often as you like. Welcome to the club nobody wants to belong to!

    Take care,
    Cindy
  • Fabu
    Fabu Member Posts: 29
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    My Oncotype was also in the intermediate range
    and I opted for the chemo. The Oncotype report showed it would increase my chances by about 4%, which was enough for me. I was also given the option of joining a clinical trial which would mean I would have a 50/50 chance of being given chemo, but I wanted to make the decision for myself, and have not regretted it.

    My feeling was that I could withstand the chemo better now when I was (relatively) young than if the cancer recurred at a later date. I just wanted to give myself the best possible chance of never having to go through this again. For me the chemo was not bad at all, and I'm now almost done with my radiation and loooking forward to the new normal, whatever that brings with it.

    I wish you the best in whatever you decide. It is a very personal decision to make.

    Please keep us posted on how you're doing and come back as often as you like. Welcome to the club nobody wants to belong to!

    Take care,
    Cindy

    Thank you cindy
    for replying. I am leaning toward chemo but am more scared of the chemo than I was of the surgery. How is that possible :)? I am seeing the oncologist again tomorrow to go over questions I have. We'll see . . . .
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
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    Fabu said:

    Thank you cindy
    for replying. I am leaning toward chemo but am more scared of the chemo than I was of the surgery. How is that possible :)? I am seeing the oncologist again tomorrow to go over questions I have. We'll see . . . .

    I didn't need chemo, which I
    I didn't need chemo, which I was very happy about. I just want to wish you good luck in your decision. If you trust your oncologist, trust that he or she is advising you for the best treatment to keep the cancer away. Good luck!
  • BethInAz
    BethInAz Member Posts: 203 Member
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    Oncotype score
    Fabu, My oncotype DX score was either 20 or 21 - I can't remember exactly. The test showed that if I did just the tamoxifen for 5 years, my chance of recurrence within 10 years was 14%. The graph showed that adding the 4 rounds of chemo would drop that percentage to 7%. I felt it was worth it to increase my odds of long-term survival without recurrence. The 4 rounds of chemo were very doable and I'm glad I did it despite the hair loss. I'm not over 9 weeks out of the chemo, growing hair back, and feeling wonderful. I've been on tamoxifen for about 5 weeks and that's going well too. I'm 54 years old - turning 55 next month. I figure I owe it to my family to do whatever I can to lengthen my life and improve my odds.
    Blessings on your decision making.
    Beth
  • CarrWilson
    CarrWilson Member Posts: 111
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    BethInAz said:

    Oncotype score
    Fabu, My oncotype DX score was either 20 or 21 - I can't remember exactly. The test showed that if I did just the tamoxifen for 5 years, my chance of recurrence within 10 years was 14%. The graph showed that adding the 4 rounds of chemo would drop that percentage to 7%. I felt it was worth it to increase my odds of long-term survival without recurrence. The 4 rounds of chemo were very doable and I'm glad I did it despite the hair loss. I'm not over 9 weeks out of the chemo, growing hair back, and feeling wonderful. I've been on tamoxifen for about 5 weeks and that's going well too. I'm 54 years old - turning 55 next month. I figure I owe it to my family to do whatever I can to lengthen my life and improve my odds.
    Blessings on your decision making.
    Beth

    OncotypeDX was a big dilemma
    The OncotypeDX test itself was a big dilemma for me. My Oncologist recommended 4 rounds of T/C without ordering the test, I got a second Oncologist opinion with the same recommendation. I was thinking about foregoing the OncotypeDX, because I wanted everything done. I did not know it, but the Surgeon sent my tissue for testing and my score came back low recurrance of 16, and chemo would only increase my odds an additional 2%. This 16 was still in the boarderline range that they are doing further clinical studies on (TailorRX clinical trial).

    I am the "BIG 50" today, and feel I wanted to do everything I can to do to beat this beast. A 2% increase in odds was enough for me. I just had my second round of T/C and I am basically doing fine, hair loss, metallic taste, slight fatigue. The Neulasta was the worst part of it.

    It came down to, if I had a recurrence and did not do chemo I would definately kick myself. If I had a recurrence and did the chemo, then I would say I had bad luck.

    There are no easy answers with this disease. Best of Luck - Carrie
  • Calleen
    Calleen Member Posts: 411
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    OncotypeDX was a big dilemma
    The OncotypeDX test itself was a big dilemma for me. My Oncologist recommended 4 rounds of T/C without ordering the test, I got a second Oncologist opinion with the same recommendation. I was thinking about foregoing the OncotypeDX, because I wanted everything done. I did not know it, but the Surgeon sent my tissue for testing and my score came back low recurrance of 16, and chemo would only increase my odds an additional 2%. This 16 was still in the boarderline range that they are doing further clinical studies on (TailorRX clinical trial).

    I am the "BIG 50" today, and feel I wanted to do everything I can to do to beat this beast. A 2% increase in odds was enough for me. I just had my second round of T/C and I am basically doing fine, hair loss, metallic taste, slight fatigue. The Neulasta was the worst part of it.

    It came down to, if I had a recurrence and did not do chemo I would definately kick myself. If I had a recurrence and did the chemo, then I would say I had bad luck.

    There are no easy answers with this disease. Best of Luck - Carrie

    Choices!
    My score came back a 10. I was relieved that I didn't have to have chemo. I also chose not to take tamoxifen. I chose this after alot of soul searching and knew I would live better without worrying what the meds were doing to my body. We are all so different and make our choices based on so many personal reasons. I have also heard about a new genetic test that test's if your body is a good metabilizor (can't spell) for tamoxifen. FYI... I hear if you DON'T have side effects it's not working... Tamoxifen that is...
  • crselby
    crselby Member Posts: 441 Member
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    Calleen said:

    Choices!
    My score came back a 10. I was relieved that I didn't have to have chemo. I also chose not to take tamoxifen. I chose this after alot of soul searching and knew I would live better without worrying what the meds were doing to my body. We are all so different and make our choices based on so many personal reasons. I have also heard about a new genetic test that test's if your body is a good metabilizor (can't spell) for tamoxifen. FYI... I hear if you DON'T have side effects it's not working... Tamoxifen that is...

    Calleen
    I came right out and asked my onc about the "if you don't have side effects, it's not working" statement and he laughed and said, "False". I asked about the genetic test for metabolizing Tamoxifen and he said a lot of insurances don't cover it. I think I'll pay for it cuz, with its side effects, why take it if your body doesn't change it into the agent that blocks estrogen on the cancer cell surfaces, right?!
    ~~Connie~~
  • Calleen
    Calleen Member Posts: 411
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    crselby said:

    Calleen
    I came right out and asked my onc about the "if you don't have side effects, it's not working" statement and he laughed and said, "False". I asked about the genetic test for metabolizing Tamoxifen and he said a lot of insurances don't cover it. I think I'll pay for it cuz, with its side effects, why take it if your body doesn't change it into the agent that blocks estrogen on the cancer cell surfaces, right?!
    ~~Connie~~

    Connie
    I think that maybe they meant all the fun hot flashes that come with taking tamoxifen..?? All the ladies in my support group who have taken it say the hot flashes are sometimes unbearable..
  • elm3544
    elm3544 Member Posts: 748
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    My score was similar and I
    My score was similar and I opted to go ahead with the chemo. My Oncologist said if it were him, he would do it. I have been dealing with alot of ongoing side effects but I do not regret my decision. I felt that I needed to do everything I could.
  • dianebraun
    dianebraun Member Posts: 51
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    I'm 46 y.o. Invasive ductal
    I'm 46 y.o. Invasive ductal carcinoma, no nodal metasteses. My score was 12 and I opted for 4 doses of taxotere/cytoxen, once every 3 weeks. My chemo starts next week. Look at the score for "down the road". I reviewed my score and 30 years from now, the 4 doses of chemo will still decrease my chances of reoccurance much more than oral chemo alone. It seems like a long time away, but 30 years from now, I plan on playing with the grandkids If 4 doses of chemo decreases my chances of a reoccurance....it's worth it!
  • Fabu
    Fabu Member Posts: 29
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    I'm 46 y.o. Invasive ductal
    I'm 46 y.o. Invasive ductal carcinoma, no nodal metasteses. My score was 12 and I opted for 4 doses of taxotere/cytoxen, once every 3 weeks. My chemo starts next week. Look at the score for "down the road". I reviewed my score and 30 years from now, the 4 doses of chemo will still decrease my chances of reoccurance much more than oral chemo alone. It seems like a long time away, but 30 years from now, I plan on playing with the grandkids If 4 doses of chemo decreases my chances of a reoccurance....it's worth it!

    I've decided on the chemo
    I saw my oncologist today and told him I decided to go ahead with the chemo. I'll start next Tuesday. My biggest concern is the hair loss. I've always loved my hair!! :( Oh well . . .I feel silly, worrying about my hair. I feel that I don't "look" sick now but I will soon, you know? Am I making sense? I'm sorry if I'm rambling.

    I appreicate all you wonderful ladies' input, by the way. Thank you so much . . .
  • Teppers
    Teppers Member Posts: 17
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    crselby said:

    Calleen
    I came right out and asked my onc about the "if you don't have side effects, it's not working" statement and he laughed and said, "False". I asked about the genetic test for metabolizing Tamoxifen and he said a lot of insurances don't cover it. I think I'll pay for it cuz, with its side effects, why take it if your body doesn't change it into the agent that blocks estrogen on the cancer cell surfaces, right?!
    ~~Connie~~

    Tamoxifen
    I just came from my first Oncology visit and felt like I was blown away. I was told I will have to take Tamoxifen and radiation and await the results of the tests to find out if I have to have Chemo. I was at a Stage 1 and somehow deluded myself that I wouldn't have to have chemo or didn't listen enough when the surgeon said they got all the cancer.

    I have never taken pills and am terrified of the side effects. I am going to ask about this test you mentioned. I had my first good cry when I got home. Have been holding up wonderfully with prayers and faith before this, but kind of came crashing down after finding I would have to take this and possibly chemo.
  • Teppers
    Teppers Member Posts: 17
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    OncotypeDX was a big dilemma
    The OncotypeDX test itself was a big dilemma for me. My Oncologist recommended 4 rounds of T/C without ordering the test, I got a second Oncologist opinion with the same recommendation. I was thinking about foregoing the OncotypeDX, because I wanted everything done. I did not know it, but the Surgeon sent my tissue for testing and my score came back low recurrance of 16, and chemo would only increase my odds an additional 2%. This 16 was still in the boarderline range that they are doing further clinical studies on (TailorRX clinical trial).

    I am the "BIG 50" today, and feel I wanted to do everything I can to do to beat this beast. A 2% increase in odds was enough for me. I just had my second round of T/C and I am basically doing fine, hair loss, metallic taste, slight fatigue. The Neulasta was the worst part of it.

    It came down to, if I had a recurrence and did not do chemo I would definately kick myself. If I had a recurrence and did the chemo, then I would say I had bad luck.

    There are no easy answers with this disease. Best of Luck - Carrie

    Trial
    I am 50 also and I chose to do the testing because I wasn't sure of a decision at this time and the way I understood it if I find I am in the middle range and decide to have chemo I can pull myself out of the test, but it would still be up to me to decide what I wanted to do. I just couldn't do it if I was 100% sure I would have chemo no matter what and I'm not sure until it would come back and I would have to make the decision with the Oncology Dr.
  • Teppers
    Teppers Member Posts: 17
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    Fabu said:

    I've decided on the chemo
    I saw my oncologist today and told him I decided to go ahead with the chemo. I'll start next Tuesday. My biggest concern is the hair loss. I've always loved my hair!! :( Oh well . . .I feel silly, worrying about my hair. I feel that I don't "look" sick now but I will soon, you know? Am I making sense? I'm sorry if I'm rambling.

    I appreicate all you wonderful ladies' input, by the way. Thank you so much . . .

    Thanks, too, for the input!
    Thanks, too, everyone for the input. I was bawling when I got home about the Tamoxifen and it just helps knowing other people have/are going through it. I feel so much better after reading about other's experiences.

    Have any of you joined a local group? The people I saw today really encourage me to do that and I think it would be a good idea?
  • GayleMc
    GayleMc Member Posts: 311 Member
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    Fabu said:

    I've decided on the chemo
    I saw my oncologist today and told him I decided to go ahead with the chemo. I'll start next Tuesday. My biggest concern is the hair loss. I've always loved my hair!! :( Oh well . . .I feel silly, worrying about my hair. I feel that I don't "look" sick now but I will soon, you know? Am I making sense? I'm sorry if I'm rambling.

    I appreicate all you wonderful ladies' input, by the way. Thank you so much . . .

    Fabu, it is not silly to be
    Fabu, it is not silly to be upset about your hair. I had a terrible time with the hair loss and am 2 weeks done with chemo and am so ready to have hair again. It is growing a little and I am no where near ready to ditch the wig. So many of the ladies on here have been so supportive and understanding and have also shown some beautiful heads of hair post-chemo. It'll be ok and all the best to you.
  • DianeBC
    DianeBC Member Posts: 3,881 Member
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    Fabu said:

    Thank you cindy
    for replying. I am leaning toward chemo but am more scared of the chemo than I was of the surgery. How is that possible :)? I am seeing the oncologist again tomorrow to go over questions I have. We'll see . . . .

    Good luck with what you
    Good luck with what you decide Fabu! I always felt I wanted to do everything, besides taking tamox, to fight the beast. Wanted no "what ifs" later. Take care!