oncotype dx

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calm
calm Member Posts: 46
edited June 2014 in Stage I Breast Cancer

I am just wondering whether oncotype dx is a standard diagnostic test for early stage cancer and if so, when do you find out about it. I have had my surgery, but don't meet with the surgeon for another couple of weeks, but I got most of my results over the phone (confirming my pre-surgery info)--and I won't see an oncologist for about a week after that. I am er+ so my surgeon talked about hormone therapy already (Tam or an aromatase Inhibitor)--but I am wondering whether chemo will be of any benefit or not and I am reading that the oncotype test might help determine that (unless it comes out in the intermediate range).

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  • hmm
    hmm Member Posts: 2,183
    edited January 2010

    My oncotype testing was suggested and then ordered by my oncologist. I did not meet with her until after my surgery. It took a few weeks for the results and it turned out that doing chemo would have offered totally no benefit and actually would have been a negative. The test itself is expensive but my insurance covered it in full.

    Sorry you have to be here but it is good that you have found this place. It has been a big help to me and continues to be so.

    Good luck and best wishes,

    Pat

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  • calm
    calm Member Posts: 46
    edited January 2010

    Hmm, thanks. Yes I think that if a test can confirm whether ChemoT would have very strong benefit or none at all (or negative as you state) that would be valuable info to have. I'll ask my oncologist when I meet him/her--not that far along yet.

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  • darsura
    darsura Member Posts: 71
    edited January 2010

    My breast surgeon ordered the test after she received my pathology report following surgery.  I had 2 different cancers, a .6cm IDC and a 1.5cm ILC.  Only the ILC was sent for oncotyping.  I did not meet with my oncologist until after I received the oncotype result, and he started me on arimidex.  It was very helpful to have my score to help decide on my treatment.

    Best wishes!

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  • hmm
    hmm Member Posts: 2,183
    edited January 2010

    last- you are very welcome and good luck with the test.

    Pat

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  • u32374
    u32374 Member Posts: 68
    edited January 2010

    There is a very long older thread on this site about the Oncotype testing.  See if you can find it or get it bumped up so you can read it.  From what I remember my Onco Dr. said it is used to determine usefullness of chemo for patients that have small size, low grade positive tumors with no lymph node involvement.

    You can tell with my DX that it was recommended that I have the test done.  My score was 25 which resulted in 6 chemo treatments of T/C.

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  • calm
    calm Member Posts: 46
    edited January 2010

    Thank-you u32374. I did find the thread. I see my oncologists next week and will ask about that test as I gather a low score wouldsuggest not to bother with chemo and a high score suggests chemo will benefit. Not sure what an intermediate score will tell them/you.

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  • Harley44
    Harley44 Member Posts: 5,446
    edited January 2010

    hello and welcome to all the newcomers,

    I see lots of messages about the oncotype test...  now I'm sure that it's a very good test so don't get me wrong, but...  don't place too much weight on this test...    While I am hoping for a very low score for all of you who are getting oncotype testing, let me explain MY story...

    I was INTERMEDIATE...  so I was just in that gray area, that they weren't too sure about.

    so I got chemo anyway...    just want you all to know that sometimes the Oncotype test is NO HELP WHATSOEVER, as in my case...

    good luck to you all

    Hugs

    Harley

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited January 2010

    To add to the confusion - I had the Oncotype DX test done which also put me in the "gray" zone (score of 22 with a 14% chance of recurrence). My onc originally said that was a "low" score and I wouldn't need chemo; 10 minutes later, after he got the results of my FISH report, which showed my tumor was Her2++++, he changed his mind and said I WOULD need chemo for 4 months with Herceptin for a year. Needless to say I was extremely disappointed.

    Do you know if your tumor tested positive for Her2? If it's equivacal upon initial testing, your onc will have to send it out to a special lab for a FISH test.......if it comes back positive, you'll need Herceptin no matter what the Oncotype DX score says; therefore, most onc's will wait until they know if the tumor is Her2+ before sending out for Oncotype DX.

    Good luck and I hope you DON'T need chemo!

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  • pj12
    pj12 Member Posts: 25,402
    edited January 2010

    last,

    I asked my surgeon to submit my specimen for the oncotype to speed things up.  It takes 2-3 weeks so if you wait til your oncolgist visit it will be even longer before you can use the info to make your treatment plan.

    I, too, was intermediate so in the grey area... but ended up no chemo.

    pam 

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  • somanywomen
    somanywomen Member Posts: 872
    edited January 2010

    If I had not found this site 4 months ago, I doubt I would have ever heard on the oncotype dx, when I brought it up to my onco doc, he seemed surprised that I even knew what it was...It did help me decide against chemo since it would just add 2% to my non recurrence rate of 86%...I did however do the rads and now the arimidex...

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  • calm
    calm Member Posts: 46
    edited January 2010

    I had my surgery (mastectomy) January 5--see my surgoen Feb 1, with medical onc Feb 2 and rad onc Feb 4--so I will bring up the oncotype test when I see all of these people. I know I am ER + and node negative and small tumour and grade 2--but don't know yet about HER2 + or -. My goal is to be as aggressive as possible in treatment-but if chemo is going to have no benefit (or risks outweigh benefits) then I don't want to go through it, and I understand the oncotype score can help determine that--except for those in the gray/intermediate area which I gather they just don't know yet if there is/is not a major benefit. This sometimes feels like a crap shoot!

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited January 2010

    I hope you find out soon if you need chemo - and why did you have to wait so long to see your surgeon and onc? I saw my surgeon two weeks after my surgery.......and I saw my onc the day after my surgery. If I had to wait as long as you I'd be a nervous wreck.........also, you'll have to wait about 3-4 weeks or more for the results of the Oncotype DX (if they decide to do it). Your surgeon should have your complete surgical pathology report by now.......including whether or not your tumor was Her2+ or equivacol...........can you call him and get the results over the phone?

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  • calm
    calm Member Posts: 46
    edited January 2010

    swimangel172, the time to see my surgeon was a bit long, but I did get my results by phone within about 7 days. I could have gone in to see another surgeon in his place but chose to wait to see him, but asked that they forward my results to the oncologists immediately (which they did) so I wouldn't have to further delay those appointments--which is why they are all lined up together. I am comfortable with timing, knwoing that treatment needs to start within about 12 weeks, and I will be meeting with them 4 weeks from surgery--i am not sure, however, whether I will have time to get the oncotype test done but I will ask them. The time has given me time todo research which I am thankful for so I will be an informed participant in my treatment. But yes, waiting is one of the hardest part of this journey.

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  • erica10
    erica10 Member Posts: 13
    edited January 2010

    My Mom is 61 had bc in 1979 and 2007.  She had mastectomy with each and no lymph involvement. However her onco dx was 28 and the oncologist recommended chemo. The tumor was about 1 cm as they said it had some encapsulation (sp) and her HER2 came back as equivacal.  She did not get a FISH test and we never heard of it.

    Do you think she could still get the FISH test. Do they keep the cancer tissue at the hospital for years. I hate this for her. She has lived in partial fear of reoccurance since 1979. 

    She helps me care for my critically ill daughter. I just dont know how much we can take

    Also, she lost weight up to her diagnosis in 07and never gains even over the holidays so that has me worried.

    I want to help her do testing if it can eliminate some fear.  It seems the anxiety of testing is overwhelming.  She also has Low Vit D and calcium of 10.6 in her bloodwork.

    I would appreciate any advice.

    Erica

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    some small stage 1's do not get it, if their onc's feel chemo is not necessary.

    For most early stage er+ her-, it's a very common test.

    I had several long threads about it.

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  • orange1
    orange1 Member Posts: 930
    edited January 2010

    They do keep tissue samples for a long time, so perhaps the FISH test can be done.  If she comes back positive for Her2+ she could consider the herceptin without the chemo (herceptin alone is not harsh at all - most people only get a runny nose from it).  It is more effective with chemo, but considering she doesn't want chemo - this is something she could take without the chemo side effects.  However, if she is Her2+, it is an aggressive cancer and she should probably have chemo.  There is an easier regimen now called TCH - not fun, but easier than some of the other regimens.

    Good luck

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  • erica10
    erica10 Member Posts: 13
    edited January 2010

    Orange1,

    Thank you for the information about the FISH test. What I am wondering is if she had the surgery in Sept 2007, would the drs still do the herceptin and possible recommend the chemo (if she would do it)

    Also, I am wondering what scans/tests should be done at this time, what is standard.

    Thanks

    Erica

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  • 1OUgirl
    1OUgirl Member Posts: 27
    edited February 2010

    My onc told me that it was very important to get the oncotype test for people in my position.  Stage 1, 9mm, no node involvment and ER+.  She said that all indications point to just radiation and then tamox.  BUT -- because of my age (43), lets see what the oncotype test reveals.  The test had only just become available about 8 months prior to my diagnosis (04/05).  Doc said that her office had never had a oncotype test come back high.  Mine was the first with a whopping 52!  I began to cry when she told me but she gave me food for thought.  If they didn't have this test, I would most likely never have gotten chemo and she believes that I would probably be one of those stage 1 breast cancers that gets revisited by this disease.  With this knowledge, the high score people get some extra needed protection and the low score people get to forgo unnecessary chemo.  It's the intermediate people who are stuck in the gray area that probably have the most agnonizing decision to make about chemo.  On April 1, I'll be 5 years out and still doing great.  At first that number 52 bothered me to no end but as time passed, it just became another number and I refuse to worry about the future because I'm too busy living for today.

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  • YramAL
    YramAL Member Posts: 1,651
    edited February 2010

    My cancer was Stage 1, grade 2, 1.5 cm in size with no lymph node involvement. The first oncologist I saw recommended chemotherapy because my tumor was over 1 cm., period, end of discussion. She did not really seem open to the idea of oncotype testing.

    I went to another oncologist for a second opinion, and boy, am I glad! He firmly believes in the value of oncotype testing, and ordered the test. I made the decision ahead of time that if I got a high score, I would of course have chemo, and also that if I got an intermediate result(the dreaded gray area!) I would get chemo as well. My results came back low! I got a score of 11, which in my case gives me a recurrence rate after 10 years of only 7%. Not only that, the risks of chemo would be greater than the benefits of chemo for me. I am so glad I decided to have the test done. 

    I chose the second doctor to be my oncologist. I firmly believed that if I was going to go with the results of the oncotype test, I needed to be with a doctor that had faith in the results of the test as well. I also felt his approach was more individualized, whereas the first doctor took more of a "one size fits all"  approach.

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  • Marion
    Marion Member Posts: 207
    edited March 2010

    Hello ladies,

    My oncotype score was 21, in the dreaded gray area ... A low score can go up to 18, so I missed a low score by 3 tiny points... :(

    I chose chemo to be safe. Even though my tumor was small and low grade, I had a micro-metastasis in one node, so I felt like chemo was the right thing to do. 

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited March 2010

    My BS just automatically ordered OncoDX testing to find out everything and had results sent to my oncologist and my primary care doc and gave me one as well.  I just assumed everyone was now being tested for it here.

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