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Oncotype Dx

mudd
mudd Member Posts: 26

(having computer trouble so I had to delete and repost)

Waiting for the Oncotype results to come in but was wondering - do they give a score in "years" like CancerMath online tool? For instance to need chemo how many "years" benefit would it have to have for the risk benefit ratio on the Oncotype . I am 65 and plugged in numbers on Cancermath and for my case there was a substantial difference in years if I checked chemo versus someone at age 45. Does anyone have any info to guide me on this until I get the actual results? My stress level is through the roof at this point I understand that ANY days advantage is worthwhile but my doctors were saying that there is a certain cutoff where the risks of chemo outweigh any benefit it might provide Very confused about what the Onco actually means.

Comments

  • plumster1
    plumster1 Member Posts: 100
    edited November 2017

    hi mudd

    Oncotype dx gives your risk of metastic spread after 10 years which includes at least five years of hormonal treatment. It is given as a number score which correlates to a percentage. For example my number was 12 which gave me an 8% risk of metastic spread if I complete 5 years of tamoxifen. I believe if you do not do hormonal treatment the risk doubles. Then it shows your percent benefit from doing chemo. My benefit was very small so the risks associated with chemo were not worth it for me. However, someone with a higher Oncotype dx score which means a higher risk of metastic spread might be able to significantly reduce their percentages and chemo would be worth it. Hopefully, this helps. Fingers crossed for a low score a that I explained it correctly :

  • specialk
    specialk Member Posts: 9,211
    edited November 2017

    Here is a list of sample reports, click on the individual samples after you open the link>

    http://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/interpreting-the-results

  • mudd
    mudd Member Posts: 26
    edited December 2017

    Still confused. So does the Oncotype factor in the patients age as well as tumor status? And are the AI drugs considered? Thanks so much. I'm obsessed with this now

  • Georgia1
    Georgia1 Member Posts: 188
    edited December 2017

    Just chiming in to agree. And it is confusing! The Oncotype DX gives you a score, as plumster points out. That number puts you into one of three categories: low (risks of chemo outweigh the benefits); intermediate; and high, where chemo is recommended. My score was 18, which is on the border between low and intermediate. I really, really didn't want to have chemo so I was happy with that score. And fyi in talking it through with my medical oncologist, she shared that the break point where she starts thinking about chemo is 25.

    Then in addition you get a risk percentage, which is your risk of a distant recurrence within 10 years. Mine is 11 percent. That's based on a large sample of women who had masectomies (mostly) and five years of Tamoxifen. So it's not perfect but the best way currently available to forecast risk of metastasis.

    Also confusing: your doctor can make a separate risk estimate of cancer in the same breast being treated now. That's called local recurrence and it's different. So, for example I'm having radiation to lower the risk of local recurrence and will likely take Tamoxifen to lower the risk of distant recurrence.

    Hope that helps and so sorry you are stressed. We've all been there. But you should have other results (tumor size, lymph node status, ER status) which are arguably more important than the Oncotype DX.

  • Georgia1
    Georgia1 Member Posts: 188
    edited December 2017

    Oncotype DX does not factor in age, diet, exercise level, etc. So your personal risk may well be lower than what the test spits out. It only factors in the genetic profile of your tumor. And it's an old database so the baseline is five years of Tamoxifen.

  • edwards750
    edwards750 Member Posts: 1,568
    edited December 2017

    The test is widely used by Oncologists. It is the one with the best research. My score was 11. 8% chance of recurrence.

    I’m confused what does exercise or diet have to do with it? Of course we all need to be diligent about both but why would a test like that even consider those factors? It’s your tumor only with no regard to family history.

    I’ve never heard an oncologist talk about taking any of those things into account when calculating your score.

    Diane

  • Georgia1
    Georgia1 Member Posts: 188
    edited December 2017

    Sorry if my answer to Mudd was confusing. Just saying that the recurrence estimate is based on the experiences of a large set of women and it throws off an average based on the tumor only. Some people were of course above average and some below. Some older, some younger. Some with good insurance, some not. Some changed their diet, exercised, some did not. So it is a good average estimate, but not necessarily a good personal average.

  • nancyhb
    nancyhb Member Posts: 235
    edited December 2017

    As edwards points out the Oncotype tests the genomics of the tumor and has been validated and relied upon for many years as a predictor of risk and recurrence potential. The “average based on tumor only" is a vital piece of the treatment puzzle. In the past chemo was determined almost exclusively based on tumor size and node status; we now know that those are not necessarily the best standards to decide on a treatment that itself comes with long-term risks. Oncotype and Mammaprint are incredibly important tools in weighing risks vs. benefits of chemo for many early-stagers with 3 or fewer positive nodes. Rather than a “personal average" these tests rely on large scientific datasets to pinpoint tumor behavior.

    I acknowledge that exercise, eating well and stress reduction are important tools in our arsenals, but those don't affect the genetics of our cancer. These tests are too important to dismiss as simply “averages”.

  • Georgia1
    Georgia1 Member Posts: 188
    edited December 2017

    Nancy I agree and sorry if my answer to Mudd's question was confusing. Oncotype DX is an important test, especially for making decisions about chemo.

  • edwards750
    edwards750 Member Posts: 1,568
    edited December 2017

    Georgia - its more blind optimism than confusion. There are no asterisks to that test. It’s pretty cut and dry. My Oncologist recommended it for me because as she said women have been over treated for years and subjected to unwarranted treatments like chemo. The Oncotype test was instrumental in preventing just that.

    Nancy explains it very well.

    I’m sure you were just trying to be helpful. I knew what the test entailed. I’m just glad we have it.

    Diane

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited December 2017

    "And it's an old database so the baseline is five years of Tamoxifen." Tamoxifen has been widely used here because yes, it's an older drug and there's a lot of experience with it. It's also a treatment that's appropriate for ER+ women regardless of menopausal status which makes the test results useful to the widest possible range of users. In a certain sense, Georgia, all databases are "old" because validating a test such as the Oncotype or the Mammaprint takes a long time. This is especially important in a cancer such as ER+ breast cancer where recurrences tend to occur over a long time frame. Limiting the data to five years wouldn't have been nearly as useful.

  • Georgia1
    Georgia1 Member Posts: 188
    edited December 2017

    Hi Hopeful. Yep, agreed. I was simply answering Mudd's question "...are the AI drugs considered?"



  • Licorice
    Licorice Member Posts: 2
    edited December 2017

    I am 67 and in Canada. My oncotype test was sent to the US and 2 1/2 weeks later, and having not heard anything, I called my cancer centre only to be told it has been "delayed". I am running out of patience with everything in general. I was diagnosed in July/Aug. 2017 with early stage 2, hormone positive, HER negative breast cancer. No node involvement. However the diagnostics have been a nightmare here ( I live in a retirement community, even though I am still actively employed in the medical field myself). Frustration abounds, and I need to move forward. Grrrrr.

  • mudd
    mudd Member Posts: 26
    edited December 2017

    Dear Licorice - I'm in the same boat as you. I am also in my 60s and waiting for the Oncotype and was told there was a delay in my insurance approving the test so now I have to wait 2 more weeks for the results. I have a similar diagnosis and the waiting is making me crazy since I feel so up in the air about my diagnosis.

  • runor
    runor Member Posts: 1,612
    edited December 2017

    It seems that the Canadian medical system should be called the Hurry Up and Wait system! If you get quick treatment in Canada you are the exception and not the rule! When you find out you have cancer it feels like an emergency (and in some cases it is!) and for all the hype about early detection, your early cancer gets damn old while you wait for your appointments, treatments and results! For me there was at least 3 weeks between anything happening. Often longer. It made me crazy - and bitchy. It also drove me batty how you're barely able to stand being in your own skin anymore, you're freaking out, not sleeping, it's on your mind constantly, and the person who FINALLY phones to make your appointment obviously hasn't got a care in the world as they chew gum and sip coffee and I want to reach through a phone and strangle them!

    Licorice, I waited almost a month for my Oncotype results. I was going to say it was the longest month of my life but that's a lie. ALL of these months have been too long. 2017 sucked hard. I hope things get moving for you. At least going forward is better than standing still in anguish and stress.

  • Licorice
    Licorice Member Posts: 2
    edited December 2017

    Agreed. Totally. Having to tell myself to put on my big girl panties, stop complaining and move forward is becoming increasingly difficult since July and as the year moves towards the holiday season. I manage to basically push negativity aside during my work day, and during waking moments. I sleep well, but must dream horrible dreams because I sometimes can’t shake the feeling of dread....then I do my day and move on. The best that I can. The waiting game is the absolute worst....I even lose my temper with the cat....omg.

  • edwards750
    edwards750 Member Posts: 1,568
    edited December 2017

    It took 2 weeks for me to get my Oncotype test results. I feel for all of you playing the waiting game. I had so much riding on the results not the least of which was chemo or no chemo.

    I vividly remember the phone call from my BS’ office. I got the call the day before I was going to see my Oncologist. I have caller ID thankfully. The nurse’s first words were good news....I cried for the first time during the whole BC process.

    It’s worth the wait but tough waiting.

    Diane

  • meow13
    meow13 Member Posts: 1,363
    edited December 2017

    In my opinion too much rides on the oncodx test results. My score was 34 on which tumor the ilc or the idc I don't know. But I chose no chemo because I wasn't willing to take the risk associated with it. My chances were 23% recurrence in 10 years, and about 12.5% with chemo. This based on using tamoxifen while I did AI drugs not the same. I am over 6 years NED and don't regret my decision.

    It is a mathematical curve fitting algorithm based on tumor traits. If we really understood the disease so many would not die from it. They are basing treatment on statistics. Can chemo kill cancer cells, yes it can but does it kill all dangerous cancer cells very unlikely. Does hormone therapy kill er+ cancer cells, yes but will it get everything unlikely.

  • edwards750
    edwards750 Member Posts: 1,568
    edited December 2017

    Maybe Meow but I’m glad they have it. I shudder to to think what it was like before the test. It’s not a perfect barometer but it’s a start.

    I’m glad you are doing so well. I am 6 years out too. Stats are overblown sometimes but I like my odds. There are no guarantees of course but I’m hanging on to my optimism stats driven or not.

    Diane

  • cookiegal
    cookiegal Member Posts: 527
    edited December 2017

    Yes AI's have a small statistical advantage over Tamox. So in theory if you are going to do AI's instead of tamox you could calculate the chance of mets a point or two lower.

    So on oncotype I had a 14% ten year mets rate

    In my head I said, AI's might make that more like 12 or 13.

    Ironically I am now on Tamox after 4.5 years on AI. Go figure!

    I put a lot of faith in the Oncotype test which was just being approved for node positive back in 2009.

    I was a 22.

    Over the years I have had doctors ask how I had the foresight to make that choice back then.

    It wasn't easy, it was scary, and I did a lot of research.

  • mac5
    mac5 Member Posts: 85
    edited October 2019

    Am also waiting on Oncotype Score.

    This Test wasn’t available for the first time around with BC so no idea how to judge it’s effectiveness in Treatment decisions.

    I’m 68 years old had IDC 8 years ago and now I’m diagnosed with ILC. Without any results from the Oncotype Test my assigned Oncologist has told me the only Treatment she will recommend is AI. No chemo no radiation.

    I have a Breast Tumor and during the Breast MRI the chest wall lit up. I’m told the Tumor is not “attached” to the chest wall. Does this sound suspicious for metastasis?

    My anxiety level is off the charts right now. I had AI the first time and absolutely don’t want to do that again! It was not worth living.

    What questions should I be asking?

  • Georgia1
    Georgia1 Member Posts: 188
    edited October 2019

    Hi Mac5. This is not a particularly active thread so you might start a new topic. But I'm so sorry about the recurrence! I assume you're having surgery? Then I would certainly ask if Tamoxifen could be an acceptable substitute for the AI. Best of luck to you, and HUGS.

  • edwards750
    edwards750 Member Posts: 1,568
    edited October 2019

    Sorry Mac that sucks. Idk whether that means it’s metastatic or not. My sister had metastatic BC. Her BC came back 3x within a 7 year period.

    I’m 8 years out last August. No guarantees apparently. I had the Oncotype test in 2011. My score was low@11 so I dodged chemo. I did have 33 radiation treatments.

    Hope your score is low. Keep us posted.

    Diane

  • mac5
    mac5 Member Posts: 85
    edited November 2019

    Thanks to you both.

    My Oncotype Score is 18...not good prediction for effective chemotherapy but we're going to have a try at it anyway. The lit up area on the MRI is thought to be ILC also. So the MO has recommended 3 cycles of CMF.

    An older Treatment regimen but since I have RA, she's hoping we can get some positive response to either the size of the Tumor or the presence in the chest. I'm willing to chance it.

    My birthday is Wednesday, chemo starts Thursday. Celebration or commiserations?