Oncotype Dx Test Anyone?

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Warrior_Woman
Warrior_Woman Member Posts: 1,274
edited January 2016 in Waiting for Test Results

My Oncotype test results will be in 12/24/13.  That's right.  Christmas Eve as all the doctors are rushing home for the holidays.  And yes, I'm on the East Coast and Genomic Health is on the West.  Surely my results will sit on the fax machine for the entire holiday.  For anyone not familiar with it, the Oncotype DX breast cancer assay is a test that examines a tumor tissue at a molecular level and gives information about the likelihood of breast cancer recurrence and effectiveness of chemotherapy.  I have attempted to predict my own results to lessen my anxiety but there is no predicting.  Is there anyone else waiting on the Oncotype score?  Anyone else who is also going insane in an effort to make their own score prediction?  And the new anticipated results date is 1/3/14!  Ugh.

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Comments

  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2013

    hi

    I was where you are five years ago   all my tests, meetings, surgery  happened over Thanksgiving and Christmas..... It felt like  a special kind of torture.  My oncotype also did not go out when I thought it would, so I did not know the results until about January 7th.... I remember, by the time Christmas came, I just stopped worrying about it.  I had had a lumpectomy with pretty good pathology, no nodes and I figured that I could probably go either way on the chemo--no matter what the oncotype score--so I worked hard to enjoy my kids, friends and family during the holiday and viewed myself as cured from the surgery--- it was not easy, but the worry was exhausting me--- so I made sure to get outside every day--- and just try to find some peace in my own mind... which is really all that matters.  

    The thing you are anxious about is chemo.  The oncotype will give you some good data as to whether you would benefit from any chemo--- you may or you may not.... what was most surprising to me was that I had to push my doctors to tell me what they thought once the results came in.  Only if it is above 30 or 35 will they definitively say "chemo"  below that, in the gray areas, they don't "tell" you what to do..... and certainly if it is really low, they will recommend against it--but many here who have had low scores have wondered if they should go forward anyway... it is not easy and while it is nice to have additional information, that can sometimes also be overwhelming... 

    Let me reassure you--when the time comes to make a decision, you will have all the information you need and you will know what you need to do for you and your situation..... you really will....if you have any anti anxiety meds, it is worth leaning on them at this point if you find it all to be too much--- because it can really feel that way.  

    Happy Holidays---- let us know--hoping for a 0 on the oncotype for you....

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Momand2kids - Bingo!  You nailed my concerns precisely.  I have chosen to meet with my Oncologist at 3 PM Christmas Eve when my family will be eating dinner.  I could wait until after the holiday but the not knowing will make me crazier.  I especially appreciate your reassurance that I will have all the information I need for my situation because I'm guessing I will be in a gray area.  Thank you so much for your reply and happy holidays to you too!

  • Daninayd
    Daninayd Member Posts: 58
    edited December 2013

    It is very hard to wait for test results, especially around the holidays.

    I was at Costco, when my oncologist called me to tell me that my Oncotype score is 4 and I do not need any chemo. Initially, he told me that the test will take 3 weeks to get the results in, thus I was very surprised to get them within a week.

    I hope you have a great score....

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Thank you Daninayd.  My experience to date is that test results come back faster than expected.  I think they give more time so that we don't bug them with phone calls.  Originally I was told New Years and now it has been moved up.  Happy Holidays!

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2013

    My oncotype came back much faster than expected. My MO, who was reluctant to order it called me with the results. The results were ready less than 1 week after Genomic Health recieved my tumor. I was also a 4. Hope you're results come in sooner than anticipated

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited December 2013

    Hi all,  

    Thought I would share this url that will take you to a supplemental table/spreadsheet that will let you estimate your oncotype score with three different regression analyses.  The ER and PR numbers range from 0-300...so if you are 100% ER positive, enter 300....if you are 50%, enter 150, etc.  If you want to read the entire article, chop off the url starting /suppinfo.   I used this while I was waiting for my oncotype and it was really close when I averaged all three.   MsP

    http://www.nature.com/modpathol/journal/vaop/ncurrent/suppinfo/modpathol201336s1.html

    The green sections are where you enter the variables for each of the categories and the highlighted yellow area is where the computed recurrence score is reflected.  If you are not familiar with Excel spreadsheets, ask someone who is to help you.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    MsPharoah - THANK YOU!  I have scoured the internet looking for something like this and I greatly appreciate your sharing it.  Please confirm that I did this correctly, if you would please.  I entered my data in the green sections of the first column as I am HER2 negative and used a 0 for the Her2 number (my Her2neu score is +1).  I entered ER/PR based upon the 300 scale.  I calculated my score twice for each of the three regression analysis sections.  The first time I used the numbers provided by my first pathology report from my original biopsy and the second time I used the slightly different numbers from my post mastectomy pathology report.  All three recurrence scores for my first pathology report were around 19 and my second scores were 15.55, 13.55 and 17.23.  Does this description sound to you like I did this correctly?  I am really on the border.  My ki67 is 40% and I know that will kick it up a bit.  I am such a numbers person and I know we're more than numbers.  Nonetheless, I really appreciate this resource.  

    Coreleliz - The cost of the test leads some docs to order the test when the outcome isn't obvious.  My surgeon waited until my pathology report came back. If it were up to me they would have sent for it immediately.  

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited December 2013

    Hi, Warrior....

    You did it perfectly!  One thing I did was to do a high/low for each model because even though my pathology said 100% ER, I knew that wasn't the case....so I did it once with 300 and the second time with 270 and I did that for any of the categories that I wasn't sure about.  For instance my nottinham score was a 4 on the biopsy and a 5 on the surgical pathology.    Then I ended up with 6 scores, a high and low for each model.  When I was done, the average score was 21 which was pretty close to the 24 I got on the Onco.  At least I was prepared for being in the dreaded gray zone!!  All that said, I did opt for chemo.  I did pretty good and am glad I did it.

    Good luck to you, hon.

  • jpteacher1
    jpteacher1 Member Posts: 52
    edited December 2013

    I am also waiting for my Oncotype DX test results.  I had my lumpectomy on December 3rd.  I am Stage 1A and Grade 2.  I will have radiation for sure, but we won't know when until the Oncotype DX comes back and a decision can be made regarding further treatment.  Since I am on Medicare, the hospital could not even send in my specimen until December 17th--two weeks after surgery because of government rules.  My appointment with my oncologist was made for January 13th so we can be sure the results will be back by then.  It's always in the back of my mind--my sister went through a lumpectomy last year at this same time.  She ended up selecting chemo--Stage 2A grade 3 and Oncotype result of 29 along with radiation.   I'm keeping my fingers crossed that I won't need chemo, but am also preparing just in case.  Happy Holidays to me with this hanging over my head.  Waiting is extremely difficult.  I'm sure there are others going through the same thing right now.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Hi jpteacher - I am also Stage 1A, Grade 2.  Stage 2A Grade 3 almost always gets recommended for chemo....(I think).  Did you try the link MsPharoah sent?  The article that goes with it is compelling.  Ultimately, while I still have to wait wait wait, I am finished reading every stupid oncology journal I can find in order to try to find some clue about where I may stand.  Happy Holidays jpteacher.  

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    MsPharoh - Of course I thought of another question.  If 21 was your average score, what was your high score?  My highest comes from the numbers of my first path report and the score is 19.07-19.4.  The final path report produces numbers all below the magical 18 as the numbers were slightly improved.  I like my 2nd report better but I doubt that either is 100% accurate.  

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited December 2013

    Warrior, of the 6 scores I created,  the highest was 23.   Something that helped me during the wait was to use that time to decide (with my family) where my cut off was.  And I did a lot of research about chemo and side effects, etc.  Thats when I learned that it is possible to maintain a normal schedule during chemo.  So while I was disappointed when I got my score, I was ready to go, physically and emotionally.  

    I know the waiting is hard.

    MsP

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    MsPharoh - Another early riser.  That's exactly what I am thinking about.  Where is my cutoff?  Where did you draw the line for yourself?  My surgeon mentioned that the scores that are intermediate yet close to high or low are "simpler decisions".  I think what she meant is that in her opinion being just above 18 doesn't warrant chemo.  Of course I didn't ask her opinion of the cutoff.   Have you seen any research about where a reasonable cutoff is for the intermediate range?  

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited December 2013

    Warrior woman, good morning.  Yes I get up early every day.  Love it!  So my score was in the middle of the middle and im not so sure that if it was a 23 , i would have opted out of chemo just because it was at the lower end of the middle.    For me it was the degree of distant recurrence risk reduction I was getting.  The oncotype score includes a recurrence score.  At 24, my recurrence score was 16.  Chemo gives you a 20 percent risk improvement as follows:  16X.20..3.2 point reduction.  So my 16 becomes 12.8.   You can see that a lower oncotype, let's say 21 , might have a recurrence score of 14...so chemo might reduce that to 11.2.  For me, I estimated 20 or above to be chemo for sure and that I would go with my oncs recommendation if it was lower than 20.

    But, you should take other things into consideration, in my opinion.  How old are you?  If you are under 50, you've got a lot of years of living ahead so your risk horizon is longer and if you have children who depend on you, that may make you more risk averse.  How healthy are you?  I am a hardy, active person and knew I could handle chemo.  (i was right.  LOL).  The way I looked at it was that my real distant recurrence risk was either 0 or 100 percent and there is no cure for breast cancer....you only know if you are cured if you die of something else so....chemo for me was my chance for a cure as a stage 1 patient. 

    I hope this gives you food for thought.  These decisions are not easy but once you make them, everything falls into place. 

    Love, MsP

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    "degree of distant recurrence risk reduction"  Bingo!

  • newbee
    newbee Member Posts: 17
    edited December 2013

    Hi  Live your name. I am one year out of the Onco test and I get it....the entire process from start to finish is like being in a bad dream...Just live it out...that is my advice. Waiting for that test was nearly as bad as hearing the initial news...Keep busy, enjoy the holidays w your family and keep positive. Mine was fairly good news and so we all live with this and it will get easier....you will adjust and take your life back. We are with you. What is, is...accept and do what you have to do...you will be a stronger person through it and you will receive many gifts...be open to receive them. I send you strength and peace....

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Newbe - Thank you! I continue to paint the image of myself with a strong and wonderful future.  I keep telling myself that I will come through this a better person.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2013

    Warrior

    I concur with Pharoah--it is good to figure out what your "line in the sand will be" and you do have to consider things like your age, health, etc.  I ended up in the gray area-- I had 2 kids, 12 and 7 and I was hale and hardy---so I did 4 A/C treatments-- I am a higher education professional and was able to be at work most of the time--- my chemo was done over an 8 week period, so honestly, it went by fairly quickly-- it was the dead of winter, so it was not like I was missing out on much--- 

    I hope you get a low score and don't have to make any decisions.  But if things turn out differently, know that it can be done--- when I look back now, I am amazed at what I did..... I was pretty awesome!!!!!    

    I am just about 5 years out from treatment--still pretty hale and hardy--- my kids are now 12 and 17 and  I don't think they remember much about it-- we kept their lives pretty normal during that time..... 

    I wouldn't want to do it again, but I know if I had to, I could.  You are stronger than you think... but let's just hope for a 0 on the oncotpye

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Thank you, momand2kids - Interestingly I'm a college prof. as well and it is the dead of winter.  That certainly makes the whole mess easier.  

  • Sharlyn25
    Sharlyn25 Member Posts: 18
    edited December 2013

    I so feel your pain.  My insurance authorization for the test got misfiled by the insurance company three weeks ago.  I went to my oncologist last Fri. for the Oncotype Dx results.  My oncologist said we could go ahead with radiation because she does not expect my Oncotype results to be anything but low risk.  I said I needed to wait until the test comes back which adds another two weeks (probably more with the holidays).  It is so frustrating.  I would like to get on with whatever treatment so I could get my life back sooner rather than later.  It seems all I do is wait, wait, wait.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Sharlyn - One would think this experience would improve patience...  It does NOT!  Be well and I hope the holidays are comfortable for you.

  • wallycat
    wallycat Member Posts: 3,227
    edited December 2013

    No result is easy to wait for.  Sending good thoughts.

    My first onco (fired him) said he was positive I would be low.  i ended up at 20.  4% benefit if I followed up with tamoxifen and 3 doctors said not worth doing the chemo.  Maybe because mine was ILC? or maybe the risk of chemo is not worth a 4% benefit.  I never gave myself a cut-off.  I looked at mitosis/grade/type of cancer and risk/benefit ratio of chemo.  

    Best to you.

  • sammolisa
    sammolisa Member Posts: 180
    edited December 2013

    I too had all of my diagnosis, surgery, testing, chemo between the end of Sept 2010 and Christmas that year.   My onc type test came back at 29.   I was never anxious about the test results though.   Devastated to find out  I had to have chemo.   

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Wallycat and Samolisa - Thank you for sharing your experience and lending support.  I am committed to doing whatever I must to be healthy.  Those intermediate scores are the problem.  They just don't know what to do with them.  I will get all the information, weigh it out and listen to all the advice of the oncs. 

  • wyo
    wyo Member Posts: 541
    edited December 2013

    Warrior- there is some type of study going on now I believe to determine benefit  with chemo vs non-chemo in the intermediate Oncotype range group.  I can't remember where I heard or read it but probably here LOL. 

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2013

    I think the study mentioned above might be the TailorX study.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Interestingly the Taylor X is looking at women with Onco scores in the 12-25 range.  Hopefully this makes everything clearer in the future.  For everyone dealing with this today, we have one shot to get it right.

  • NancyHB
    NancyHB Member Posts: 1,512
    edited December 2013

    I have always felt grateful that my score was 42 - not because I'm an over-achiever (which I am), but because it left no doubt in my mind that I needed chemo, and that chemo would be a benefit to me.  I did try - twice - Tamoxifen, and gave it up, so my recurrence score is a little higher now than it would be had I followed protocol.  And I did my 20 weeks of chemo over winter/spring of my first year of grad school, and worked as a grad assistant, and while it was tough it wasn't impossible (frankly, I enjoyed being part of the academic world and have really hated to leave it behind - almost makes going back to get a doctorate an enjoyable idea!)  

    Pharoah, thanks for the link.  I played with it using the results I have to determine my ki67 (my pathologist's lab does not do the ki-67 so it's the one piece of the puzzle I didn't have, and wondered about).  Interestingly enough, given what I *do* know (including my final Oncotype score) - my ki67 is somewhere around 96.  Cripes.

    Good luck, Warrior Woman - I hope your results are cut-and-dried one way or another.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Hi Nancy - All the agony seems to be around the intermediates.  I hate to say it but I agree.  I'd rather have a clear cut easy to make decision.  

  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2013

    WW

    the year I was diagnosed, the markets tanked, every xmas party was cancelled--I did not have to be social--it was like the universe was helping me during the waiting and diagnosis--and frankly, doing chemo in January and February was great-- no one was out, (I live in the NE) so I could just fly under the radar at work and at home.

    did you see the onc yesterday???

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