Anyone else have to make a decision based on Oncotype DX?

cindycflynn
cindycflynn Member Posts: 1,132 Member
edited March 2014 in Breast Cancer #1
I just received my Oncotype DX score of 20, which puts me just about smack dab in the middle of the Intermediate range of scores, making my decision pretty difficult. I was hoping for either a high or low score (preferably low, of course!!) to help me make a decision about whether I want to undergo chemo.

I know that you can't make the decision for me, nor do I want anyone to, but if anyone has dealt with this decision, can you share what you considered as factors, and how happy you were with your ultimate choice?

I don't meet with my oncologist until December 4th, so I've got a lot of time to stew over this!

Thanks for your input!!

Comments

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #2
    My decision
    Hi, Cindy -

    I don't know if my experience will be helpful at all, but I'll share it with you.

    I refused to have the Oncotype test, because I knew in my gut that doing chemo was the right thing for me. I'm ER+, and only 40, so I have a lot of estrogen-filled years ahead of me. But most importantly for me, I knew I couldn't live with myself if the cancer comes back sometime in the future, and I was left thinking -- what if I'd done chemo?

    My doctor ran a computer simulation that showed that chemo might only reduce my chance of recurrence by 3-4%. But that was enough for me -- I just needed to do everything I could to try to avoid having to face this again.

    The best advice I can give you is to talk with medical professionals you trust, and survivors you trust, and then go with your gut. It's your body and your life, and ultimately you know it better than anyone else.

    Traci
  • roseann4
    roseann4 Member Posts: 992 Member
    #3
    TraciInLA said:

    My decision
    Hi, Cindy -

    I don't know if my experience will be helpful at all, but I'll share it with you.

    I refused to have the Oncotype test, because I knew in my gut that doing chemo was the right thing for me. I'm ER+, and only 40, so I have a lot of estrogen-filled years ahead of me. But most importantly for me, I knew I couldn't live with myself if the cancer comes back sometime in the future, and I was left thinking -- what if I'd done chemo?

    My doctor ran a computer simulation that showed that chemo might only reduce my chance of recurrence by 3-4%. But that was enough for me -- I just needed to do everything I could to try to avoid having to face this again.

    The best advice I can give you is to talk with medical professionals you trust, and survivors you trust, and then go with your gut. It's your body and your life, and ultimately you know it better than anyone else.

    Traci

    Yes, I had a similar situation.
    Hi Cindy,
    My tumor was 1.8 cmm so my surgeon said it was "ify" on whether or not the onco would recommend chemo. She hoped the test would give us the info we needed to make it a clear choice. My score was 18 which is intermediate. I talked it over with my husband and my oncologist and ultimately I decided against chemo. I had some lifestyle changes to make and at 58 (now 59) I was concerned that the chemo might do some real damage. As Traci said, my gut told me that chemo was not the right choice if the difference in my 10 year survival would be improved by only 3%. My oncologist asked me to consider how I would feel if I had a reoccurance. Would I regret that I hadn't done everything possible? I asked her if it could come back anyway, and she said yes. I would never know for sure if chemo would have made a difference anyway. So many uncertainties to deal with! What does your "gut" tell you?

    Roseann
  • ppurdin
    ppurdin Member Posts: 1,181
    #4
    Oncotype DX
    Hi,my score was 18 like you in the middle.It was a really hard decision for me about the Chemo.and like you know you have to decide.If I had chemo it would bring my chances of recurance to 11%.I made my decision by what someone had mentioned on the boards.That even 1% better chance of recourance is worth having chemo.So I did Chemo,unfortuntly I had a rare allergic reaction to Chemo and they had to stop it after 2 cycles.Long enough to loss my hair darn.But I wanted my kids and myself to know that I did everything I could to fight This beast of Cancer.Good Luck to you.I will say a Prayer for you.I know it is a hard desion to make.Love and Prayers.(Pat).
  • BunnyJane
    BunnyJane Member Posts: 213
    #5
    roseann4 said:

    Yes, I had a similar situation.
    Hi Cindy,
    My tumor was 1.8 cmm so my surgeon said it was "ify" on whether or not the onco would recommend chemo. She hoped the test would give us the info we needed to make it a clear choice. My score was 18 which is intermediate. I talked it over with my husband and my oncologist and ultimately I decided against chemo. I had some lifestyle changes to make and at 58 (now 59) I was concerned that the chemo might do some real damage. As Traci said, my gut told me that chemo was not the right choice if the difference in my 10 year survival would be improved by only 3%. My oncologist asked me to consider how I would feel if I had a reoccurance. Would I regret that I hadn't done everything possible? I asked her if it could come back anyway, and she said yes. I would never know for sure if chemo would have made a difference anyway. So many uncertainties to deal with! What does your "gut" tell you?

    Roseann

    Chemo or not?
    Hi Cindy:

    I had a 1.4 cm ER+ tumor and was on the fence about chemo until I took the Oncotype test. I scored 28, which is right at the high end of the intermediate risk. My oncologist recommended chemo. Like Traci, I wanted the chemo as I didn't want to leave anything on the table and have any regrets. I was 48 at time of dx and had my ovaries removed 3 years ago. Now that chemo is behind me, I feel like I've done everything that I could have done to beat the beast. Chemo sounds really horrible, but it is very doable.

    We understand that this is a difficult decision, but you will make the right decision. Best of luck! Jane
  • roseann4
    roseann4 Member Posts: 992 Member
    #6
    ppurdin said:

    Oncotype DX
    Hi,my score was 18 like you in the middle.It was a really hard decision for me about the Chemo.and like you know you have to decide.If I had chemo it would bring my chances of recurance to 11%.I made my decision by what someone had mentioned on the boards.That even 1% better chance of recourance is worth having chemo.So I did Chemo,unfortuntly I had a rare allergic reaction to Chemo and they had to stop it after 2 cycles.Long enough to loss my hair darn.But I wanted my kids and myself to know that I did everything I could to fight This beast of Cancer.Good Luck to you.I will say a Prayer for you.I know it is a hard desion to make.Love and Prayers.(Pat).

    I think you age should be a consideration.
    Age is a big consideration. I was 10 years out from menopause which makes it much easier to control estrogen. My cancer is estrogen receptive. If I were a young women, I may have chosen differently. There are risks either way and we need to make the best decision for our situation. It would have been so much easier if there was a clear indication such as a high or low onco score. Good luck with your decision.

    Roseann
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #7
    Thanks!
    t's been such a roller-coaster ride, as I know all of you can relate to. My first diagnosis indicated that it was caught early and all signs were positive for a good long-term prognosis. Then in preparation for surgery, they kept wanting to look at other areas of the breast and the other side to rule things out, so a lot of ups and downs, 2 MRIs, 3 ultrasounds, another mammo, but eventually ended up with just the 1.3cm tumor to deal with, and I opted for a lumpectomy (with radiation, of course). Then last week I met my radiation oncologist who wants to take yet another mammogram to look at some calcifications before he finalizes the radiation treatment plan, and now this "intermediate" result. So the treatment plan I'd hoped to have in place by the end of September is still eluding me.

    I guess I'm more scared of this than I thought I would be.

    Before my surgery I decided to cut my hair short in part so I wouldn't have to deal with it while recovering, in part to make an easier transition in case I did lose my hair. And of course, I've been learning so much from all of the chemo gals to try to mentally prepare myself in case I did need chemo, but now that I'm actually faced with the decision, I think it's scaring the he!! out of me.

    Your input is very helpful to me. I at least know that I'm using sound criteria to make my decision. I think my gut is leaning toward doing the chemo, but it is almost too scary for me right now to even type that out. I'm sure I'll adjust as reality sinks in.

    Thanks again,
    Cindy
  • Sunrae
    Sunrae Member Posts: 808
    #8
    cindycflynn said:

    Thanks!
    t's been such a roller-coaster ride, as I know all of you can relate to. My first diagnosis indicated that it was caught early and all signs were positive for a good long-term prognosis. Then in preparation for surgery, they kept wanting to look at other areas of the breast and the other side to rule things out, so a lot of ups and downs, 2 MRIs, 3 ultrasounds, another mammo, but eventually ended up with just the 1.3cm tumor to deal with, and I opted for a lumpectomy (with radiation, of course). Then last week I met my radiation oncologist who wants to take yet another mammogram to look at some calcifications before he finalizes the radiation treatment plan, and now this "intermediate" result. So the treatment plan I'd hoped to have in place by the end of September is still eluding me.

    I guess I'm more scared of this than I thought I would be.

    Before my surgery I decided to cut my hair short in part so I wouldn't have to deal with it while recovering, in part to make an easier transition in case I did lose my hair. And of course, I've been learning so much from all of the chemo gals to try to mentally prepare myself in case I did need chemo, but now that I'm actually faced with the decision, I think it's scaring the he!! out of me.

    Your input is very helpful to me. I at least know that I'm using sound criteria to make my decision. I think my gut is leaning toward doing the chemo, but it is almost too scary for me right now to even type that out. I'm sure I'll adjust as reality sinks in.

    Thanks again,
    Cindy

    Hi Cindy
    I'm sort of in your shoes. My onco test was 18. I'm estrogen positive, 3 tumors, 2.2cm, 1.5cm and a smaller one with lymph node involvement, lots of calcification. My surgeon said I will have a masectomy when the tumors have shrank small enough. When I went to the onc, I was sure I would have to have chemo but she said I would do very well on Femara, an estrogen inhibitor and I have, after 2 months the tumors can no longer be felt. So now I'm in a holding pattern waiting for the surgeon to see me and schedule surgery, which may be a few months away. I think age (I'm near 70) and the fact of having diabetes, asthma, HB pressure and some other health issues may have played a part. My onc really feels like chemo would not benefit me and assured me that Femara will do the trick so I'm counting on her to do the best thing for my cancer. I also had a hysterectomy years go so don't have to worry about ovaries. I know how scary chemo is for you. I know you and I can do this if we have to. Its a choice you have to make for yourself but if I were younger I probably would go with chemo. And I will if I'm told it will benefit me after surgery. My thoughts and prayers are with you as you make your decision.
  • Calleen
    Calleen Member Posts: 411
    #9
    Sunrae said:

    Hi Cindy
    I'm sort of in your shoes. My onco test was 18. I'm estrogen positive, 3 tumors, 2.2cm, 1.5cm and a smaller one with lymph node involvement, lots of calcification. My surgeon said I will have a masectomy when the tumors have shrank small enough. When I went to the onc, I was sure I would have to have chemo but she said I would do very well on Femara, an estrogen inhibitor and I have, after 2 months the tumors can no longer be felt. So now I'm in a holding pattern waiting for the surgeon to see me and schedule surgery, which may be a few months away. I think age (I'm near 70) and the fact of having diabetes, asthma, HB pressure and some other health issues may have played a part. My onc really feels like chemo would not benefit me and assured me that Femara will do the trick so I'm counting on her to do the best thing for my cancer. I also had a hysterectomy years go so don't have to worry about ovaries. I know how scary chemo is for you. I know you and I can do this if we have to. Its a choice you have to make for yourself but if I were younger I probably would go with chemo. And I will if I'm told it will benefit me after surgery. My thoughts and prayers are with you as you make your decision.

    I have
    always tried to follow my gut. It is there for a reason. I have never regrettted following what my gut tells me even when at the time I was scared. In the end peace of mind is what we all stive for. I can't think of a single time that I've regretted following what my gut is saying... Not so true for my Heart...

    You will make the right choice for you and we will all be right here for you!!

    Huggs

    Calleen
  • SherryAF
    SherryAF Member Posts: 31
    #10
    Calleen said:

    I have
    always tried to follow my gut. It is there for a reason. I have never regrettted following what my gut tells me even when at the time I was scared. In the end peace of mind is what we all stive for. I can't think of a single time that I've regretted following what my gut is saying... Not so true for my Heart...

    You will make the right choice for you and we will all be right here for you!!

    Huggs

    Calleen

    I will be having to make
    I will be having to make this decision very soon, and I am really interested in all of the replies. I had my lumpectomy last Wednesday, and we don't have the results of the Oncotype DX test yet. I'm so glad I found this board. It helps to hear other people's thinking and reasoning.
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #11
    Cindy, I don't have the same
    Cindy, I don't have the same diagnosis as you but know making all the decisions is a challenge. Like the others have said, go with your gut. I had a lumpectomy and chemo was not an option but a necessity for me. If it's the chemo that's scaring you, know that it is doable, It's not as bad as it was years ago. Like you said, you have time to make your decision, so I'd recommend that you enjoy the Thanksgiving holiday and reflect on the good things with your family and friends. Take care.
  • cvolk821
    cvolk821 Member Posts: 36
    #12
    I'll be there soon
    Cindy - I'm awaiting my Oncotype DX score right now. My Onc told me there he hasn't seen any data supporting a genuine benefit to chemo for low or intermediate risk scores - only high risk scores. I, too, am very interested in everyone's posts regarding this topic. I'm trying to read everything I can on it as I may need to make a similar decision very soon.

    Connie
  • sherria49
    sherria49 Member Posts: 126
    #13
    TraciInLA said:

    My decision
    Hi, Cindy -

    I don't know if my experience will be helpful at all, but I'll share it with you.

    I refused to have the Oncotype test, because I knew in my gut that doing chemo was the right thing for me. I'm ER+, and only 40, so I have a lot of estrogen-filled years ahead of me. But most importantly for me, I knew I couldn't live with myself if the cancer comes back sometime in the future, and I was left thinking -- what if I'd done chemo?

    My doctor ran a computer simulation that showed that chemo might only reduce my chance of recurrence by 3-4%. But that was enough for me -- I just needed to do everything I could to try to avoid having to face this again.

    The best advice I can give you is to talk with medical professionals you trust, and survivors you trust, and then go with your gut. It's your body and your life, and ultimately you know it better than anyone else.

    Traci

    Hey Cindy!
    First, know that we are all here for you.

    I have almost the same response as Traci. I decided against the Oncotype test as well. I am 49 yrs young, IBC, one tumor 1.5cm, no lymph node involvement, also ER+. I had my port put in at the time of surgery (bilateral mastectomy). I saw my oncologist Wednesday last week. He wanted to have the Oncotype test done. I said, "No need, I'm doing chemo!" He was kinda of surprise that I had made my decision. But like Traci, even a 1% chance of reocurrence was not an option.

    Please, seek the advice of your medical professionals and 'go with your gut'. This is a personal decision for all of us.

    Please keep coming to the boards, there are so many wonderful warriors/survivors/angels here to help you through the bad days, and plenty of happy posts as well.

    Will keep you in my thoughts & prayers.

    Hugz
  • mizcaldwell
    mizcaldwell Member Posts: 143
    #14
    cvolk821 said:

    I'll be there soon
    Cindy - I'm awaiting my Oncotype DX score right now. My Onc told me there he hasn't seen any data supporting a genuine benefit to chemo for low or intermediate risk scores - only high risk scores. I, too, am very interested in everyone's posts regarding this topic. I'm trying to read everything I can on it as I may need to make a similar decision very soon.

    Connie

    I don't know if it was on
    I don't know if it was on this site or another - but a lady posted that she had seen an oncologist that was doing a study on what the cut-off score should be for the high range on the Oncotype test - and he felt that it was well below the high twenties to 31 that is now considered the high range.

    I was positive that I would not do chemo or tamoxifen - and I was doubting radiation. My tumor was tiny. It had been caught early. The margins were clean and the lymph nodes negative. I was thinking of going a natural route - until my Oncotype score came back 74. I now have the record for the highest score my oncologist has seen. . . so I went from no treatment to the full thing. I've done one round of chemo and the next comes on Friday. When it came down to it - I felt I really couldn't do anything else. I'm 49 - but I have a 9 year old daughter - so she was the deciding factor.

    Good luck in your decision. I agree - go with what you feel inside. Whatever you do, do it with positivity and conviction - and it will be the right thing for you.

    Lori
  • maryannrogers
    maryannrogers Member Posts: 115
    #15
    mizcaldwell said:

    I don't know if it was on
    I don't know if it was on this site or another - but a lady posted that she had seen an oncologist that was doing a study on what the cut-off score should be for the high range on the Oncotype test - and he felt that it was well below the high twenties to 31 that is now considered the high range.

    I was positive that I would not do chemo or tamoxifen - and I was doubting radiation. My tumor was tiny. It had been caught early. The margins were clean and the lymph nodes negative. I was thinking of going a natural route - until my Oncotype score came back 74. I now have the record for the highest score my oncologist has seen. . . so I went from no treatment to the full thing. I've done one round of chemo and the next comes on Friday. When it came down to it - I felt I really couldn't do anything else. I'm 49 - but I have a 9 year old daughter - so she was the deciding factor.

    Good luck in your decision. I agree - go with what you feel inside. Whatever you do, do it with positivity and conviction - and it will be the right thing for you.

    Lori

    My oncytype DX score came
    My oncytype DX score came back at 8, so for me it was a no-brainer.
  • tigger99
    tigger99 Member Posts: 44
    #16
    mizcaldwell said:

    I don't know if it was on
    I don't know if it was on this site or another - but a lady posted that she had seen an oncologist that was doing a study on what the cut-off score should be for the high range on the Oncotype test - and he felt that it was well below the high twenties to 31 that is now considered the high range.

    I was positive that I would not do chemo or tamoxifen - and I was doubting radiation. My tumor was tiny. It had been caught early. The margins were clean and the lymph nodes negative. I was thinking of going a natural route - until my Oncotype score came back 74. I now have the record for the highest score my oncologist has seen. . . so I went from no treatment to the full thing. I've done one round of chemo and the next comes on Friday. When it came down to it - I felt I really couldn't do anything else. I'm 49 - but I have a 9 year old daughter - so she was the deciding factor.

    Good luck in your decision. I agree - go with what you feel inside. Whatever you do, do it with positivity and conviction - and it will be the right thing for you.

    Lori

    MizCaldwell, my friend is
    MizCaldwell, my friend is just like you! Very tiny tumor, no lymph node involvement, thought all was fine until she got her score of 70. For her oncologist, like yours, it was the highest score he'd ever seen... or anyone in his practice, for that matter.

    To the original poster, I wish you well and good luck with your decision. Do lots of research and make a decision you can feel secure with. My score was 18, I'm on Arimidex and no chemo. On the other hand, I have a friend with a score under 10 and she wanted to have chemo anyway, for her own peace of mind.
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #17
    mizcaldwell said:

    I don't know if it was on
    I don't know if it was on this site or another - but a lady posted that she had seen an oncologist that was doing a study on what the cut-off score should be for the high range on the Oncotype test - and he felt that it was well below the high twenties to 31 that is now considered the high range.

    I was positive that I would not do chemo or tamoxifen - and I was doubting radiation. My tumor was tiny. It had been caught early. The margins were clean and the lymph nodes negative. I was thinking of going a natural route - until my Oncotype score came back 74. I now have the record for the highest score my oncologist has seen. . . so I went from no treatment to the full thing. I've done one round of chemo and the next comes on Friday. When it came down to it - I felt I really couldn't do anything else. I'm 49 - but I have a 9 year old daughter - so she was the deciding factor.

    Good luck in your decision. I agree - go with what you feel inside. Whatever you do, do it with positivity and conviction - and it will be the right thing for you.

    Lori

    Study
    Yes, when I first met with my oncologist she told me I was eligible for a study on the Oncotype. If I participated, th cutoff ranges would have been lower, with the intermediate between 12 and 22 I think. For me, I'd still fall into Intermediate which would put me in a randomized group with a 50/50 chance of being given chemo. So I could sign up and let someone else decide for me, but this is not a decision I want anyone else to make for me.

    Thank you all for your input and your words of encouragement. Those of you that have already gone through this have helped me by sharing their stories, both good and bad, and making me feel like I can do whatever it takes to win this battle.

    I will be giving thanks for all of you tomorrow.
  • fauxma
    fauxma Member Posts: 3,577 Member
    #18
    cindycflynn said:

    Study
    Yes, when I first met with my oncologist she told me I was eligible for a study on the Oncotype. If I participated, th cutoff ranges would have been lower, with the intermediate between 12 and 22 I think. For me, I'd still fall into Intermediate which would put me in a randomized group with a 50/50 chance of being given chemo. So I could sign up and let someone else decide for me, but this is not a decision I want anyone else to make for me.

    Thank you all for your input and your words of encouragement. Those of you that have already gone through this have helped me by sharing their stories, both good and bad, and making me feel like I can do whatever it takes to win this battle.

    I will be giving thanks for all of you tomorrow.

    Cindy,
    I am in that study.
    Cindy,
    I am in that study. I didn't know my onco score at the time but I meet all the criteria and I knew I had the choice of leaving it if I wished to. I also hoped let it be low (preference of course) or high but like you mine was in the middle, 21. I was torn. Do I continue in the study or opt out and make my own decision. I decided to remain in the study. The reason for the study is to see if chemo does make a difference in these intermediate numbers. It meant that I would be randomized into chemo/no chemo but then I was going to have to make that decision anyway. I am in the no chemo group. I would have be fine with chemo and I am fine with no chemo. I felt that it was an important study and I want to be part of the future of treatments. But I based staying in the study on several things, my age, grown child and knowing that my choice could be of benefit to my own child or grandchild one day. I don't regret it. It is a very personal choice and with your number there is no clear cut choice. Go with your gut, your heart, your head and do what you know will be the best decision for you, your family and your personal situation. That will be the right choice for you, just as mine is the right choice for me even though our numbers are so close. Big hugs are being sent your way. And whatever choice you make my prayers are with you that you slay the beast.
    Stef
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #19
    fauxma said:

    Cindy,
    I am in that study.
    Cindy,
    I am in that study. I didn't know my onco score at the time but I meet all the criteria and I knew I had the choice of leaving it if I wished to. I also hoped let it be low (preference of course) or high but like you mine was in the middle, 21. I was torn. Do I continue in the study or opt out and make my own decision. I decided to remain in the study. The reason for the study is to see if chemo does make a difference in these intermediate numbers. It meant that I would be randomized into chemo/no chemo but then I was going to have to make that decision anyway. I am in the no chemo group. I would have be fine with chemo and I am fine with no chemo. I felt that it was an important study and I want to be part of the future of treatments. But I based staying in the study on several things, my age, grown child and knowing that my choice could be of benefit to my own child or grandchild one day. I don't regret it. It is a very personal choice and with your number there is no clear cut choice. Go with your gut, your heart, your head and do what you know will be the best decision for you, your family and your personal situation. That will be the right choice for you, just as mine is the right choice for me even though our numbers are so close. Big hugs are being sent your way. And whatever choice you make my prayers are with you that you slay the beast.
    Stef

    I didn't have to make the
    I didn't have to make the choice Cindy. I think everyone is different in what they would do. Some would take chemo even if the % of it helping was only 1 percent. Others will pass on chemo if it would help them 4 percent. Just decide what you want to do, what you can live with. Good luck!
  • Sunrae
    Sunrae Member Posts: 808
    #20
    cindycflynn said:

    Study
    Yes, when I first met with my oncologist she told me I was eligible for a study on the Oncotype. If I participated, th cutoff ranges would have been lower, with the intermediate between 12 and 22 I think. For me, I'd still fall into Intermediate which would put me in a randomized group with a 50/50 chance of being given chemo. So I could sign up and let someone else decide for me, but this is not a decision I want anyone else to make for me.

    Thank you all for your input and your words of encouragement. Those of you that have already gone through this have helped me by sharing their stories, both good and bad, and making me feel like I can do whatever it takes to win this battle.

    I will be giving thanks for all of you tomorrow.

    My onc told me about the
    My onc told me about the same study and I was about ready to enter. Then I found out that you had to already have surgery, which I have not. After discussing it all with my husband I decided that I still wanted to make my decision, not have it randomly done for me, I felt like you do. The onc still felt like Femara was the right choice for me and I think so too. Wishing you the best as you make your choice!

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