Oncotype Dx Test

frances1
frances1 Member Posts: 28

 Did Anyone of you had done the above test that had ILC grade 2 with axillary node removal

 with one lymph positive, clear margin, lession 5 cm,and post-menopausal...

 Please let me know and what was your scores and what kind of treatment you had done...and is the test reliable...One doctor adviced me to do it and one said its not validated for what I have....

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Comments

  • LoriL
    LoriL Member Posts: 185
    edited June 2010

    The whole purpose of the Oncotype DX test is to give some guidance as to whether or not chemotherapy would be benficial for stage 1 and 2 people. Since you obviously will be receiving chemotherapy because of your positive lymph node and size of your lesion, I'm not sure why the Oncotype Dx would be helpful. Best wishes to you! 

  • nash
    nash Member Posts: 2,600
    edited June 2010

    Actually, OncotypeDX has been validated for post-meno women with a positive node. See here (sorry I can't post a live link):

    http://www.oncotypedx.com/BREAST/PatientCaregiver/IsOncotypeRight.aspx

    I know of at least one ILC woman with a large (4cm+) tumor who had a good response to neoadjuvant HT.

  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    The doctor who thought the test didn't apply probably didn't know it was available for women with 1-3 positive nodes. This information seems to get around slowly, even among oncs. You can take it, and Iwould recommend it.  No test is 100 percent accurate, but it is highly reliable and backed by considerable research. They have a website which has information about the test and the basis for it.

    The onc may also have been impressed by the size, but ILC just tends to be bigger and is not necessarily more aggressive if it is big. This is what the oncotype dx can tell you

  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited June 2010

    Hi Frances,

    I would definately get the OncotypeDX done.  My tumor was between grade 2 and 3 along with being pleomorphic and my score was only a 9.  I feel great and have faith in this test.  I have not been able to find one person who had a low score with a reoccurance and I have been asking all over the internet.  Good luck and take care!

    Nancy

  • frances1
    frances1 Member Posts: 28
    edited June 2010

     Nancy  and Seabee

     Did you had chemo treatment or radiation or what

      Thanks for both for your reply

  • frances1
    frances1 Member Posts: 28
    edited June 2010

     Hey everybody

    Thank you for ladies for replying ..that helps a lot..but

     Most of the ones that answered me had negative lymph...Did any of you had as me one positive

     lymph with lesion 5cm and did the oncotype dx test and what was the score and the treatment

      please advice

      Thanks

  • weesa
    weesa Member Posts: 707
    edited June 2010

    frances, I had the OncotypeDx done on archived tissue. I had already done chemo and radiation but I wanted to know how aggressive my cancer was because I was having great difficulty taking an aromatase inhibitor anad wanted to stop early. My oncotype score was an 18. I stopped early.

  • frances1
    frances1 Member Posts: 28
    edited June 2010

     Seabee

     Thank you again for your reply..I know you had 3 positive lymph..

     what treatment did you take..did you take chemo....

  • Seabee
    Seabee Member Posts: 557
    edited August 2010

    frances1--My little beast was irregular in shape and multifocal, according to MRI extending in one direction to 6 cm. It was classified as 2.2 for whatever reason. My oncotype score was16 and I declined chemo, mainly because the research I was reading indicated that most HER2- lobular tumors do not respond well to chemo. Most of them are slow growers and are not affected. But if yours is one of the exceptions, then it's good to know that too.

    Many people feel better if they do chemo, because even if they have a recurrence they feel that they used every available weapon. Now if I went through chemo in spite of the evidence I had collected and had a recurrence, I would just be hopping mad for getting another bad break. I wouldn't blame myself for trusting the evidence--but that's just me. Everybody's different.

  • frances1
    frances1 Member Posts: 28
    edited June 2010

     Seabee

     I also been told that mine is irregular in shape..did you take radiation and blocker for 5 years

     or you had other treatment..let me know

     thanks

  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    frances1--Yes, I did radiation and am taking Femara, since I am post menopausal. I have no noticable side effects from Femara. I already had stiff joints from arthritis, and don't notice anythihg getting worse. I did both of these because they seemed likely to be helpful.

  • hlya
    hlya Member Posts: 484
    edited June 2010

    Hi, Seabee,

    May I know your ER%? 16 should not be a high score? 

  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    hlya--according to the path report, ER=95%, PR=0. Oncotype represents the expression on a numerical scale, in my case ER=10.9 out of 12.5 maximum, PR=4.5 out of 10 maximum.

    A score of 18 is on the border between low and intermediate risk. High scores begin at 30.

  • hlya
    hlya Member Posts: 484
    edited June 2010

    Thanks Seabee!

  • JannaC
    JannaC Member Posts: 30
    edited June 2010
    Seabee-Did you have a lumpectomy or mastectomy?  I had an onco score of 19 and also declined chemo. I had 25 days of radiation and I'm on Femara and have no real side affects.  I'm still going to see my onco every 3 months for blood tests.  I go tomorrow and am always a little squeamish, even though I don't get the results for a week.
  • Brenda1919
    Brenda1919 Member Posts: 5
    edited June 2010

    Hi,

    I feel very fortunate as will. My Oc DX was a 5 . Although, I haven't researched yet. Can you please send me some info that you have with a low recurrence. I'm so happy that you score was a 9 Thank God!!!

    Thanks Brenda

    PS: I'm still trying to figure out where everything is on this site.  I'll get there:)

  • paulac
    paulac Member Posts: 2
    edited June 2010

    I have just recently been diagnosed with Stage 1 Invasive ductal carcinoma, ER+, PR-, Her2-. My tumor was .9 cm, negative nodes. I had a lumpectomy therefore I will have radiation as well as the estrogen inhibitor. My Oncotype DX score was 21 which changed minds about my treatment. Should I have chemo and if so what is the chemo choice? I have varying opinions about treatment. Any information from others would be appreciated. PC

  • paulac
    paulac Member Posts: 2
    edited June 2010

    I am not sure.

  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    JannaC--I had a lumpectomy and radiation, am now on Femara.  I see the BS, RAD onc, and med onc every 6 months. Had an MRI and mammo in February. I like being followed closely.

  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    Paulac--People with low intermediate scores who don't feel comfortable skipping chemo often opt for some of the "lighter" regimens. No A would be called for given your DX. 

  • frances1
    frances1 Member Posts: 28
    edited June 2010

     Seabee

     with Femara are you getting hot flashes..I been told when I start using Tam my hot flashes will

     be worse..what are you doing and what everybody doing with hot flashes....

  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    Frances1--As far as I know I had a total of 2 or 3 mild hot flashes during menopause (premenopause was worse for me), and I have not had any on Femara.

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited June 2010

    My score was 17 with my ER/PR the same as Seabee 10.9/4.5. I am in the midst of 16 rads (had #5 today). I opted for no chemo as it only reduced my recurrance % by 3%. I am 58 and the potential se's outweighed the 3% benefit. Am scared to take Arimidex but I will try to give it a shot. My body does NOT like any kind of drug so it will be one day at a time for me.

  • KKeckiella
    KKeckiella Member Posts: 5
    edited June 2010

    I'm glad I asked for the Oncotype test.  It turns out my score was 35.  Woo Hoo.. bring on the chemo!  I have since finished chemo x4 and just got done with rads  1 week ago.  It's no fun of course, but I for one am happy for the options.  It did simplify my goals and treatment.  I'm now a 'T' girl for a couple of years when we may switch to AIs.  We will see how it goes.  Karen

  • MaureenA
    MaureenA Member Posts: 39
    edited June 2010

    Hi Frances,

    My stats and treatment plan were similar to several others.  Oncotype score 16, ER score 9.9 and PR score 7.1.  At the time of diagnosis I was 57 and postmenopausal, lumpectomy, did not do chemo, but did radiation and have been on Arimidex for about 26 months.  I am fortunate to tolerate Arimidex fairly well.  Some joint stiffness...I resemble the Tin Man when I get up from a chair after I have sat for a while, some hot flashes, but all quite tolerable.  Thinking good thoughts for you.

  • frances1
    frances1 Member Posts: 28
    edited June 2010

     Hello everyone

     Finally the oncotype dx results came and my score was 17 , ER 8.4  PR 7.4 According to the drawing chart it stats that I will benefit 4% from chemo, even though I had one lymph positive out

     of 32 negative and my lesion was 5cm.  My doctor leaving the decision to me..Iam considering not to do chemo just the radiation and tamoxifen..Do you think Iam doing the right decision

     Its not enough suffering from cancer but also from hot flashes (after stopping the estrogen that I was taking for years)..need help please in making decision and what are you ladies doing with your hot flashes..

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited June 2010
    Frances - to do chemo or not is a very personal decision. All I can tell you is what my decision was. As I said above, I am 58 and the potential se's of chemo outweighed the benefit of 3% risk reduction for me. You need to discuss this with family and friends and ultimately, do what you feel is best for you.
  • Seabee
    Seabee Member Posts: 557
    edited June 2010

    Frances--One thing you  might consider is that hot flashes are temporary: your body will adjust. Some of the worst ses of chemo are permanent.

  • Hood1980
    Hood1980 Member Posts: 537
    edited July 2010

    Frances,  I would also like to encourage you to seek out additional oncologists for their opinion.  I went to 3 different ones.  The tie breaker was the onc at Johns Hopkins that told me with a tumor of my size (4.5 cm), they would definitely go with chemo.  Again, like others have said it is your personal decision.  I have no long term effects from my 4 Txs of Taxotere/Cytoxan and I feel that I have done everything I could possibly do (along with eating right & exercising) to prevent BC from coming back.

  • gpawelski
    gpawelski Member Posts: 564
    edited July 2010

    frances1

    Oncotype DX can measure the activity of dozens of genes and reveal which ones are most active. The test is expensive, but many insurers cover it because it often prevents even more costly and unnecessary chemotherapy.

    Predictive accuracy is the only data existing to validate the Oncotype DX test, which wasn't a prospective study and certainly wasn't a "real world" study. The Oncotype DX test has been independently validated by the original laboratory group which published the results.

    Also, no one is seriously proposing that any of the molecular tests now available (Oncotype DX, EGFR amplification/mutation) should have to be proven efficacious, as opposed to merely accurate, before they are used in clinical decisions regarding treatment selection.

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