Anyone with an intermediate oncotype?

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  • qazi_rehan
    qazi_rehan Member Posts: 1
    edited May 2011

    Kindly anyone explain about this score , I need a research on it.

    Thanks 

  • Steff66
    Steff66 Member Posts: 33
    edited May 2011

    I have no idea about my oncotype, not told here in Norway but I asked for a Ki-67 test which is usually only done if there is lymph node involvement. it came back today and it is 40%! it really scared me sice all oncologists so far before test was done have said chemo in my case is being overtreated. but now I see oncol. on Friday, I probably start chemo then although It is not clear how chemo helps in my case. all I have read is that high Ki67 score is poorer prognosis, no matter whether you're N0 or N1. anyone knows more about Ki67 and chemo? wishing you all the very best! Steff66

  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    Steff when my onco looked at all my path he said if my Ki67 was over 10% he would have recommended chemo.  Mine was under 10% so he did not recommend it.  I really do not know that much about the KI67.  Good luck with your onco appt.

  • GabbyCal
    GabbyCal Member Posts: 277
    edited May 2011

    Hi Steff66 -

    I'm not familiar with Ki67, but can tell you that I was told ILC Grades 1&2 don't respond to chemo as well as ILC Grade 3 and/or IDC. I was also told ILC responds well to aromatase inhibitors (Arimidex, etc.).  Something to ask your MO about on Friday.

    I'm hoping you get good news on Friday. 

  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited May 2011

    Lovelillian I am waiting for my oncotype results and have been discussing the possibilties with my hubby. I am still not sure but with the middle average being 18 - 31 we were discussing 25 to be my cuttoff point to have chemo.. I'm hoping I don't have to make that decision .. will probably find out tomarrow.. At 24, I would probably not do it either..but would not miss any of my recheck appointments..

  • Lee7
    Lee7 Member Posts: 657
    edited May 2011

    GmaFoley,

    I'm curious about your positive node since I had one also. Did you get any info about whether it was a micromet (under 2mm in size), or just some isolated cells in it? 

    My first Onc did say chemo for me when my node showed up as a macromet, (over 2mm in size). I pushed to have the Oncotype done anyways, got a 20 score, and ultimately decided not to do any chemo, just rads and hormonal tx.   

    I hope you have a low score and have the decision be easier for you.

    Lee

  • NewatThis
    NewatThis Member Posts: 41
    edited May 2011

    Lee and others,

    What helped you make the decision not to have chemo? I'm really struggling.  My onco score was 19. Having chemo seems to be a choice--and I'm afraid I'm making the choice not to have it because I'm too afraid to lose my hair and to look and feel sick. It's a numbers game, I was told by one oncologist. Chemo will improve my chances of no recurrence by 3-4 percent...which also doesn't seem alot...but is not having chemo a responsible choice? It would really help to know how others made the choice. thanks...

  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    NewatThis-- my MO gave me the same numbers and he said that he did not feel it was worth the SE that I would have from it for such a little improvment. My score was 23

  • NewatThis
    NewatThis Member Posts: 41
    edited May 2011

    Thank you, Sherry.  I spoke again with the oncologist today.  I am heading straight to radiation, and not doing chemo. The next phase of this roller coaster begins!

  • shelbytroy12
    shelbytroy12 Member Posts: 26
    edited June 2011

    I had a score of 25 and chose chemo.  For me the 3-4% chance of improvement was worth it to me.  I figure it's my life I'm talking about.  I can deal with the side effects (and have, as I finished chemo in Feb).  I didn't want to second guess my decision later.  If you feel good about your decision, then you should go with it and don't look back.  Best of luck to you.

  • nanaof2
    nanaof2 Member Posts: 112
    edited June 2011

    Shelbytroy, it is a personal choice, but like you my husband said any chance is too much, so I did the treatments. We didn't want to second guess ourselves later.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2011

    My MO has agreed to send both my tumors for the oncodx test. He was reluctant because I have bilateral disease. He tells me there is no real data on how to interpret the test results in such cases. I'm hoping for 2 low scores since I'm leaning away from chemo anyway. But intermediate scores will probably confuse me more.....

  • Lee7
    Lee7 Member Posts: 657
    edited June 2011

    coraleliz,

    The Oncoscores will at least give you more info about your tumors and how aggressive or hopefully not aggressive they are. I think more info is better.

    I sent you a PM too.

    Lee

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2011

    This post has been around a month or so but thought I would still offer my 2 cents worth...My score came by 11 and my tumor is Grade 1. The oncotype test determined my cancer is non aggressive. My ONC said no chemo - halfway through Rads. I have to say if the grade of my tumor had been a 3 I probably would have done chemo. diane

  • lindaku
    lindaku Member Posts: 13
    edited June 2011

    My score was a 17 and I am grade 3.  My Onc is advising against chemo and said he would have even if the score had been a bit higher.  Who knows, there is a 2% chance chemo will help me and I will regret not having it and there is also an equal chance chemo will affect me adversely and I will regret going that route.  Its a tough call, isn't it?  Everyone has to decide for themselves.

  • TinaT
    TinaT Member Posts: 2,300
    edited June 2011
    lindaku:  Aack!  You're right, it's tough.  Our scores are very close - you're at the upper limit of the low range and I'm at the lower limit of the intermediate range at 18.  I was expecting to fall squarely into that low range because my surgeons predicted that the number would be "very low" due to finding my cancers so early.  So the 18 was a bit of a surprise.  However, the predictions paralleled the statistics that my oncologist got with Adjuvent! Online so she's comfortable and agrees with my decision to forgo chemo.  Yes, it's a crapshoot!!!
  • lindaku
    lindaku Member Posts: 13
    edited June 2011

    Clyn:  I had an interesting discussion with my onco today.  I know we are both concerned about the grade 3 diagnosis.  He stated that the grade is a "peek" at your tumor.  It is like looking across the street through the window of their bedroom and saying "Boy, that room is a mess".  Then you get your onco score.  If it is low, it is like going across the street, entering their bedroom and saying "Hey, it wasn't as bad as I thought.  Now I have a lot more information to base my decision on."  Since I am on the high end of the low risk scale, my chance of a recurrence is 11% in the next 5 years.  That does include those with much larger tumors as well so it probably isn't that high for me.  But it also says that getting chemo probably won't change that percentage.  Once again, bleh.  Since this discussion is on intermediates, my onco also said he wouldn't have advised chemo unless I was in the high range.

     I had my ct simulation today for starting radiation.  Should start mid next week. 

  • TinaT
    TinaT Member Posts: 2,300
    edited June 2011
    Clyn:  You'll feel so much closer to having your plan in place after your onc appointment.  Good news about the tumor board - the more heads put together, the better! Best wishes...
  • TraNguyen
    TraNguyen Member Posts: 2
    edited June 2011

    Hi everyone! We r from Viet Nam. My mum 62  with diabetes and hypertension has 27 score - intermediate oncotype dx too. Dianososis 09/05/2011, 3cm, stage IIA, 0/3 nodes, ER+11.3, PR+6.5, HER2-. It is very difficult to make decision about chemo or not. 2 doctors recommend chemo, but I am afraid of the risk because she is not young and has diseases. Please give advice! Thanks a lot!

  • ColoGal
    ColoGal Member Posts: 14
    edited June 2011

    My score was 21, but it was not the only thing that I considered when I chose NOT to take chemo.  I was DX'd with Stage2, M0,N0, IDC, Pr+, Er+, Her2-, 2 years ago,  I chose to have a mastectomy to get rid of as much of the affected tissue as possible. My surgeon was able to get wide, clean margins. Honestly, I felt like I was being pressured into getting on the chemo train.  The oncologists that I started out with was so gung-ho about chemo, but would not directly answer questions about the benefits to my specific type of cancer. Turns out, my Oncotype score revealed a 3% improvement with chemo, versus taking Tamoxifen alone.  When I consulted other oncologists - they all pretty much said the same thing.  If a patient does not see at least a 10% improvement, from a certain treatment, it's typically not recommended. So, I decided not to poison my body for a 3% improvement.  However, if the grade of the tumor would have been higher, or if I had lymph node involvement, or if the surgical margins had been tight, I would have probably done chemo.  Also, keep in mind that cancer is binary. It's yes or no. Not a % of.  Statistically, I should not have gotten cancer. No family history, I don't smoke, or drink. I am almost a vegetarian and I have a very active lifestyle.  So statistics are useful to an extend.  BTW:  I changed oncologists about a year after I was diagnosed. The first thing I asked my new Oncologists was how she felt about my decision to forgo chemo. After looking at my various reports, she told me that in my case, it probably would not have made much of a difference.  If you would like her contact info - let me know. She is in Colorado - very highly regarded breast cancer research Oncologist.

  • Tankweti
    Tankweti Member Posts: 13
    edited February 2017

    I was Stage I, triple positive: ER, PR, HER2 highly positive. No one ever offered me Oncotype DX. My original onc only wanted me to do radiation + Tamoxifen with no Herceptin. I concluded the man was either nuts or trying to make work for himself when I came back with metastases. All my other docs asked me why he didnt want to Rx Herceptin and my response has been - "I don't know. You would have to ask him about his rationale. " Went for a 2nd opinion to Sloan Kettering. I had done my homework and knew exactly what I wamted: Taxol + Herceptin. It was not known if Herceptin worked without chemo and since I was node negative and PET negative, I opted for the least offensive regimen.as I live alone and have no support system. I had also fallen on ice and broken my right wrist just before treatment. The MD at Sloan agreed that I could go with weekly therapies of Taxol + Herceptin x 12 weeks, followed by Herceptin alone for one year. Taking weekly chemo is much less stressful than taking dose dense treatments every 2-3 weeks. Dose dense is what most patients receive. It essentially means you are getting a double or triple dose every two to three weeks. Weekly dosing takes very little out of you. While it is true that the dose is cumulative, and at the end you may feel a little under the weather, it is certainly a lot more do able than dose dense. I used cold caps and did not lose my hair although it did thin minimally under the influence of a year's worth of Herceptin. I am now going on 3 years post diagnosis and no evidence of disease.

  • nem126
    nem126 Member Posts: 109
    edited February 2017

    Hi Everyone,

    Just got my oncotype results today. Score of 16. So at the very upper edge of "low risk." Distant recurrance rate is 10% with rads and tamoxifen.

    What complicates things a bit is that I'm only 32. If I was older I think it would be easier to say no chemo, but I'm young and I don't know what to do. Theoretically I have a long life ahead of me... it seems like a long time for the cancer to come back. However, my onc said that I could go either way, but she thinks the side effects of chemo are worse than the potential benefit. She estimated 2% benefit.

    ER, PR +.

    Please help. Thoughts/ similar experiences GREATLY appreciated. I am getting a second opinion, but I also don't want to put off my rads too much longer while I wait.

    Sarah

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited February 2017

    Nem- I saw you on another thread and then that you posted about the Oncotype question so popped in here to share. Mine was 23 and got the same advice, risk to benefit would not help me and chemo would have been over treating my case. I was 52 when I was diagnosed and my docs said you likely will live another 30 years so we like to do chemo when we think you really need it (certain types for sure get it like HER2 positive, node positive pathology). I had something like a 2-3% reduction with chemo. I had very similar pathology to you from the info you did share on your byline.

    You are young and not sure if you have had children yet, but chemo can change things with fertility so best to get some advice from that direction too before you decide (maybe you have already.......)

    You may want to ask your MO if no chemo then what? My guess is after rads, you are going to be put on tamoxifen (usually for pre-menopausal women vs. the AIs for post) for either five or ten years. That helps to keep the reoccurrence risk down.

    Decisions with no clear cut guidelines make it so hard. Once you gather all the facts, I suggest to do a pros and cons of doing chemo vs. not doing it (side by side comparison). I had to make some similar decisions related to what type of rads I would do and this was what really helped me do it. The list that is longer usually is the winnner.

    PM me if you want to talk more. Happy to help!


  • nem126
    nem126 Member Posts: 109
    edited February 2017

    Hi Jazzy,

    Thanks for the feedback! I went ahead and just started rads, mostly because the 2 other hospitals I tried to schedule a second opinion with couldn't get me in for another month. I didn't feel comfortable waiting that long. So, maybe not the best way to make the decision, but in the end I felt I had no choice but to just get started with rads. Hopefully it was the right decision.

    I'm 2 treatments into 6 1/2 weeks of rads, and then I'll be on some sort of hormone therapy for 5-10 years. Probably tamoxifen, but I've heard about younger people doing monthly shots combined with AIs as well. Not sure which is better. I worry a bit about being instantly flung into menapause at the ripe old age of 32 with the latter option.

    Sarah

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