Oncotest Scores

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited April 2012

    wonderwoman and dianarose, I found the oncotype DX website to be very helpful.  There's a lot of good information out there, especially under the healthcare professional section.  They say grade does not correlate with the oncotype DX.  So it comes down to if you put your trust in the oncotype. 

    Wonderwoman I think if I had gotten that reply from the Cedars pathologist and oncologist, I would be able to rest easy with no chemo.  But I would never make someone else's decision.  Do your research and go with your gut.  My center is a big believer in oncotype score.  I was a 16 and there was no discussion of chemo being a good idea.  I decided to go with the numbers and do my best to exercise, which is also supposed to reduce recurrance and be healthy.  In my mind, it doesn't mean I have no chance of recurrance, it means the chemo wouldn't offer much more benefit in reducing my chance of a recurrance.    

  • doxie
    doxie Member Posts: 1,455
    edited April 2012

    Dianarose,  So sorry you are in such a dilemma.  Bc is a complex disease.  We are all just hoping and "in-my-gutting" that our choices are correct when the treatment is somewhat clear.  I can see why your treatment team is puzzled.  You might consider going for a consultation at a major cancer center.  I didn't do that because there wasn't much to question about the treatment plan.  But your bc presents challenging questions.  Good luck.

  • Crescent5
    Crescent5 Member Posts: 442
    edited April 2012

    Dianarose, what a dilemma! I have the same oncotype scorew w/no + nodes. I would be very nervous about no chemo with 17+ nodes. I see you had 2 tumors IDC & ILC. Did they test both?

  • Dianarose
    Dianarose Member Posts: 2,407
    edited April 2012

    Crescent5- they used the tissue that was from my lumpectomy which was 3 weeks prior to my bmx and it had both types of bc in it. My ER and PR scores were 9.4 and 7.4 which I would assume are on the high end. They are assuming that this cancer was there when I was first diagnosed almost 8 yrs ago but was not detected. Thank God it is not real aggressive. I think if my score was in the teens I would consider chemo, but not with a 6. I want to fight with the right weapons. I know my new MO talks to others at Dana Farber, so hopefully they have come up with a plan by the time I see him on Monday. Nodes positive or not, chemo is of no benefit to me and the cancer I have. .

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2012

    Diana Rose....the only thing I can think of is parp inhibitors, which are still in trial, but in a case like yours, perhaps worth a shot. 

    You are right that the low oncotype women with a lot of nodes did not really get much of a benefit from chemo. Especially with the ILC, which tends to be low oncotype.

    Wonder, it sounds like things are lining up for you!

  • newbe6
    newbe6 Member Posts: 44
    edited April 2012

    I was obsessing over this topic last year at this time and think I will revisit it. What is the ki67 and is it in the oncotype report? I have that, but would love to be able to think that grades are subjective and I could be 2 instead 3!

  • Spokanellie
    Spokanellie Member Posts: 46
    edited April 2012
    I'm wondering about the ki67 too. I think I understand what it is, but I don't think my Oncotype report has the information. It was 4 pages long and only has my score (15, recurrence risk 9%), charts for negative node and positive node, and then bar graphs on the last page for ER, PR & HER2. Is there a longer report I should be asking for? (I couldn't find it on the pathology report either after searching both the biopsy path report and the surgical path report.)
  • wonderwoman123
    wonderwoman123 Member Posts: 27
    edited April 2012

    Hi Spokanellie!

    Are stats are pretty similar.  I found my ki-67 on my first biopsy report.  and when i requested the long form pathology report, it was on about page 9.  it had changed significantly between the two which i also found interesting.  You would think it might go up since after the biopsy the cells would be repairing that intrusion and so cell development might be higher... but in my case it was 50% after the biopsy and 21% from the lumpectomy... and i have just had a 2nd opinion pathology report and i am waiting for the hard copy, but the doctor on the phone said i was in the intermediate range, which i believe is 10-20%  - you might have to ask for your doc for your ki67 and he will look it up and maybe send you more details about yours.

    So you must be done radiation by now, and on to the hormone therapy?  How is that going?  Any side effects?

    Linda 

  • Spokanellie
    Spokanellie Member Posts: 46
    edited May 2012

    Hi, Linda. Yes, the numbers are similar. I haven't even met with the RO yet though (May 8), so I don't know when I'll actually get this show on the road. There have been several delays, but this cancer is slow growing, so I'm going to outlive it (and any of its little squatter relatives).

    First there was discussion between the MO and the SO (and even the local tumor board!) about whether to do neoadjuvant therapy or start with surgery. The SO won that one because there wasn't a lot to have to shrink first (1.5 cm lump) and we already knew there was at least one met to the nodes. She removed all the axillary nodes to be certain, so that's taken a while to heal.

    Next I developed an axillary staph infection 5 days post-op that didn't respond to oral antibiotics, so back in the hospital for 4 more days.

    And then when the Oncotype came back low and only a 9% RR with 1-2% relative change, both the SO and MO said, "Let's throw all our weight behind hormonal therapy. That'll be a bigger systemic punch than chemo would be." So I'll be on Femara generic for 5 years.

    Theoretically I'll be able to skip radiation to the underarm and "just" have whole breast radiation. I'm looking forward to learning the RO's plan. I don't know how long it'll take to get all the measurements and then the simulation. Meanwhile I'm working on my range of motion exercises for my armpit -- that sounds really odd, doesn't it? Laughing The idea of holding my arm over my head for any length of time gives me cold sweats.

    Ah well, nothing has changed my conviction of a positive outcome. I just wish I could get on with it!

  • wonderwoman123
    wonderwoman123 Member Posts: 27
    edited May 2012

    Spokenellie: - the waiting must be killing you!  ugh  May 8th seems so far away.  As luck would have it, i am still waiting also.  The 3rd opinion MO, wants the 2nd opinion pathologist to do a few more tests. ha  so i am awaiting those results.  I am very grateful for the thoroughness, as i had decided on just the radiation, when i found out my grade was a II.  And every doctor kept repeating the chemo would have little to no benefit... but once i made that decision, my 3rd opinion doc called and said, hang on making that decision if you can, i would like to run a few more tests.

     So i wait also!  I will let you know how it goes!

    For you it is probably great that there has been a long wait giving you more recovery time since you had to deal with that infection.  Good to let it really heal well.

    Here is to next week and getting started! 

  • artsee
    artsee Member Posts: 1,576
    edited May 2012

    Wonderwoman....In your heart...tell us, what is your decision? No matter what the opinions...what have you concluded?

  • wonderwoman123
    wonderwoman123 Member Posts: 27
    edited May 2012

    artsee - in my heart i have believed i was to get the chemo...but difficult to make that decision when everyone is saying the 'but the test says no'..... the 2nd path report confirmed my suspicions and i am a Luminal B which benefit from chemo, unlike Luminal A's (from what i can understand).  Also confirmed some of my tumor was Grade II and some Grade III which could explain the lower test score if the oncotest happened to be done on a lower area.

    I start TC X 4 tomorrow.  Any helpful hints?

    Thanks for asking that question... i could not articulate at that moment, but i appreciated it.

    Hugs

    Linda 

  • artsee
    artsee Member Posts: 1,576
    edited May 2012

    Hi Linda,

    This is interesting. I applaud you for being so adament. I wasn't. I said 'get me the juice...and let me get the hell out of here'.

    It's doable....helpful hints? Drink lots of water and let the stuff run through you fast. Don't be afraid to take those nausea drugs even if you feel ok. Good luck and you're in my prayers.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2012

    Wonderwoman...what a process! But I bet you feel more secure having done the research.

    Glad you feel like you have a plan.

    Good luck! 

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited May 2012

    I've been following your story wonderwoman.  It sounds like your MO's were so responsive and thorough, following up on your concerns.  Personally I think you made the right choice to do chemo with Grade 3, despite the oncotype score and it turns out your issues matched some things I read about different parts of the tumor being of different grades.

    Is the "T" Taxotere or Taxol? Overall, it sounds like a light regimen...I just finished my 6th chemo dose dense (Adrimaycin/Cytoxin and now Taxol).  I think Adriamycin is much harsher than others, but I have to say, very doable.  If they give you Emmend, it really does control the nausea.

  • joanneasiata
    joanneasiata Member Posts: 719
    edited May 2012

    Hi ladies just read a few of the posts here ,how did u get your oncotype and what is is .? I'll go away and do a bit of reading up on it

    Jojo

  • wonderwoman123
    wonderwoman123 Member Posts: 27
    edited May 2012

    Hi Joanne - The oncotype test looks at the genetic makeup of the tumor, specifically 21 genes and it weighs that with the er pr and her aspects and makes a prediction based on this information as to your likelihood of relapse, and the benefit of chemo.  

    I think in the past they have found many women were overtreated since they did not have the type of tumors that chemo would be so beneficial so this test was developed to try to be more specific and allow a more specific treatment protocol for each individual tumor type.  

    here is a link to the companies website which might help you:  http://www.oncotypedx.com/en-US/Breast.aspx

    How are you doing?  It looks like you have been at this for almost 2 years.  

    Cheers,

    Linda 

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited May 2012

    I had an onco score of 14.  I was told my nodes were clean, no vascular invasion, just take arrimidex.  I'm 62.

    Just for confirmation I sent the slides to Memorial Sloan Kettering.  They found a micromet in a node and vascular invasion.

    Pathologists look through a microscope and decide.  You need the most skilled pathologists, these things are hard to see.

    I got several opinions.  All but one said to go on arrimidex.  The dr. at Memorial Sloan Kettering said that arrimidex is very new.

    The onco test is very new.  It takes decades to be sure.  She wanted me to do chemo.  So I did.  She said I might get a 3%

    advantage and if you are one of the 3% that is a lot.

    So I did a six month round of CMF.  

    I had the last infusion 2 months ago.  

    I don't know if it was the right thing to do.  It meant I was off of arrimidex for 6 months and if that really is the best treatment for my

    estrogen positive tumor then why be off of it?  and I gained a ton of weight on chemo which is the worst thing for recurrence.

    I also did not excercize.

    I think no one knows for sure.  It's the "gray area".  But I felt I had to do what I could.

    I'm still wondering if radiation might not have been a good idea.  

  • artsee
    artsee Member Posts: 1,576
    edited May 2012

    Timbuktu...I guess I"m a little surprised that you had that long of chemo. I would have thought it would be 4 times and rads. It sure tells us Drs. are all different in their opinions.

  • jacksoncaroline
    jacksoncaroline Member Posts: 3
    edited May 2012

    I am grade 3, stage 1 with onco test 22.  I am in the dilemma of deciding my treatment plan.  Due to overall health and age (66), oncologist doesn't think the benefits of chemo outweigh the risks.  Don't know what to do.  Reoccurrence rate is 14% with taking hormone therapy and radiation.  What do you think?

  • jacksoncaroline
    jacksoncaroline Member Posts: 3
    edited May 2012

    Artzee I am in somewhat the same staging and grading as you.  I had te onco test and came out at 22 (gray area)  I am 66 and moderate health and weight problems.  My dr has said chemo would not benefit me that much and doesn't feel with my other issues I should take it.  Did you have chemo

  • artsee
    artsee Member Posts: 1,576
    edited May 2012

    Hi Jackson...It looks like you are in the 'grey' area as for as Oncotype is concerned. I had 4X chemo only because of the grade 3 and my onco score was 35. That just told the story for the Drs. who were very surprised. I had 32 rounds of rads as well. I still don't really get the whole onco scoring and went with the Dr's recommendations.

    I was 59 at the time and exercised and normal weight. Who knows? I still say do the chemo. It's doable and I will never say I wish I would have done that, but now it's too late. Good luck in your decisions and keep me posted.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2012

    @artsee CMF is a milder chemo...and older one as well, but it takes more treatments. (Sometimes they do it dose dense) At MSK they tend to use it for borderline cases.

    On Wisconsin, BTW, I love that state! 

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2012
  • Lee7
    Lee7 Member Posts: 657
    edited May 2012

    Thanks SpecialK for posting that link.

    Do you know what the low-hi range is for the Ki67 scores that determine if its a Luminal A or B?

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited May 2012
    lee7 - I've read, but open for correction, that a Ki67 over 20% is considered high.  It was something I researched as my initial path had my Ki67 at "60% Poor Prognosis."  That caught my eye, to be sure. Is that the definition for differentiating luminal A from B, no idea.
  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited May 2012

    Wow, this is all so interesting.  I have an Oncotype score of 13, recurrence chance 8%, but I also have 3 positive nodes which have sizable cancer in them, but not broken through.  The Adjuvant test was a little more gloomy, but they test different things.  If only there were reliable study results with the Oncotype testing for women in my situation with positive nodes, but there really aren't any large studies yet.  Understandably, few want to enroll and take the chance of getting chemo when it might not benefit and might harm and their docs aren't encouraging them to enroll.  I think there is a newer study happening now that will help somebody in the future.  My MO said I was in a gray area, the RO said to do both rads and chemo, and I was left to decide.  I did not know about Lumina or Ki67 scores.  I decided to do CMF, starting Friday. 12 weekly, 6 weeks of rads, then 12 weekly again.  Weekly because the SE's may be less.  Interesting note, since I had extended morning sickness with all three of my girls, my chances of being nauseous with chemo go way up.  Give me anti-emetics, please.  My MO says I can stop the CMF if it's too much, that's how unsure we are of the benefit.  But I decided to give it a try, think of it as a little less time than a pregnancy, my temporary job, whatever.  At least I'll know I gave it a shot.  Of course, after reading all this, I am wondering if putting off Tamoxifen/AIs is such a good idea.  Ultimately, I am putting a large amount of trust in my MO, who I think is capable and knowledgeable.  I go to a cancer center in Seattle where a lot of research happens and I know she is up on all the studies, worldwide.  I will ask her about the Lumina and Ki67, though.  Sometimes the docs just don't know how much info patients want.  I want a lot.  My treatment plan isn't written in stone.

    God bless all of you, those who have made decisions and moved on and those in the middle of the decision-making process.  No looking back. 

  • mybee333
    mybee333 Member Posts: 1,189
    edited May 2012

    My prev. MO was involved in some of the initial research with Oncotype testing.  I was first treated at a university research hospital.  My Oncotype is 16. He said that meant no chemo.  There would not be enough benefit to offset the risks.  There really wasn't a discussion.  He presented this as a fact and we moved on to discussing AI's. I'm not saying he was right, just relating what happened.  I didn't question it at the time. He is currently involved in research looking at the long term use of AIs past 5 yrs., to avoid recurrence. I had a multifocal cancer with IDC, DCIS, Paget's - 1.4 cm tumor, several other microtumors, no nodes, ER+. I had a mastectomy, after two lumpectomies failed to get clean margins. 

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited May 2012

    WonderWoman,

    Hope you're feeling better!

    I just saw your link to the Oncotype webpage. I didn't know they had predictors for node-positive tumors in post-menopausal women. The report given me did not include that. Another thing to ask my MO about! Thanks.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2012

    Jeannie, it's tough making that decision isn't it.

    The study for node positive women is very small. I had one slightly positive node and it was still a tough call. 

    I think you made a good choice, CMF has milders sides I hear. 

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