MO says Oncotype test underestimates recurrence risk....

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orangeflower
orangeflower Member Posts: 146
edited June 2020 in Stage I Breast Cancer

Hi friends. I was diagnosed in January, and I had a second opinion appointment with a medical oncologist at Memorial Sloan Kettering a couple of days ago. I wanted information about my recurrence risk with and without endocrine therapy. My Oncotype test said that I have a 3% risk of recurrence in the next 9 years if I take tamoxifen. The oncologist said to take the percentage of risk on Oncotype tests with a grain of salt...She said studies coming out in recent years have shown that recurrence risk is higher than oncologist used to believe. She said that she was confident that my recurrent risk it’s actually more like 10% over the course of 15 years, even with endocrine therapy. Without it, she thinks my risk is 15%.

I was quite surprised to hear this. Has anyone else been told that the percentage of risk reported by the Oncotype test underestimates risk?

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  • KeepingCalm
    KeepingCalm Member Posts: 88
    edited May 2020

    Hi Danne,

    Yes, that happened to me although under slightly different circumstances and kicked me into doing chemo of which I'm now through 2 of 4 rounds so even though was initially very disappointed about that am now feeling like I'm making progress and so far hasn't been nearly as bad as one might think.

    In my case I was on a 2 week clinical trial prior to surgery of a drug that MO feels could definitely have influenced the tumor proliferation factors that factor into the Oncotype. That said, a 2nd opinion felt that was just speculation and suggested a middle step could be to get the Mammaprint which would place me at either low or high risk instead of just over the line into intermediate as my Oncotype came back. The 2nd opinion also felt that even without Mammaprint I could reasonably make the decision to forgo chemo. However, insurance might not have covered the second test and more importantly for me one could speculate that there could have been the same underestimate issue.

    In the end, while I am strongly Er+, my PR was + but low, but HER2- and all of that combined with my relatively young age (39) had my MO say that her projection for me was more like like 13% or so recurrence risk with just surgery and endocrine therapy and she said her perspective was that this was not a “good enough" outcome if the option of chemo + endocrine therapy could theoretically bump me well into less risk - in my case she suggested 5-7%. She felt this was more important given the number of decades ahead of me. That said it is of course a very personal decision and I don't know yet what being on long term endocrine therapy will be like. Stats have benefits but also don't account for everything. After all I fell into the much less likely I'm getting breast cancer at all in the first place at my age and am trying to do everything in my power to put me on the other side of those odds going forward.

    Have you input your stats? In my case these were helpful to me in that the were very much in line with what my MO felt my recurrence risks are.

    http://www.lifemath.net/cancer/


    https://breast.predict.nhs.uk/



  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2020

    Danee78, wasn’t this and the variables discussed in great depth and detail in your other thread?

    https://community.breastcancer.org/forum/78/topics/876292?page=1#post_5546763


  • orangeflower
    orangeflower Member Posts: 146
    edited May 2020

    No, this is about the Oncotype test basically being wrong.

  • orangeflower
    orangeflower Member Posts: 146
    edited May 2020

    It sounds like they just don't know for sure what your recurrence risk is and are just guessing to some degree. I thought the Oncotype was a sophisticated test you could really trust....

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2020

    I think that was covered in the other thread as to discussion of the same Oncotype score being significantly different if you are,say, 30 versus 70 at age of diagnosis. If you are old the score might overestimate, thus the other optional calculation, If you are young that is why the score could lead an oncologist to still recommend chemo if you are very young even if the score would normally indicate “no chemo.”

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited May 2020
    I think the Oncotype is a good predictor for the first five years, but not necessarily after that. This is just my opinion based on the fact that I had a low Oncotype (12) and a high BCI.
  • RatherBeSailing
    RatherBeSailing Member Posts: 130
    edited May 2020

    Oncotype doesn't take into account tumor size and grade.


    https://www.ascopost.com/issues/august-25-2019/tum...


  • BCat40
    BCat40 Member Posts: 241
    edited May 2020

    RatherBeSailing, thanks for posting that article. It's pretty relevant to me because I am 40 and had an Oncotype score of 20, which puts me in that bucket where they are scratching their heads as to whether or not to recommend chemo.

    I also note that Oncotype doesn't take into account whether there was lymphovascular invasion. I am clinically low risk because my tumor was 8mm with a mitotic score of 1 and ki67 of 5%, also there was no LVI. However my oncotype score puts me in the intermediate risk category. According to Oncotype I would get a ~3% benefit from ET and a ~4% benefit from CT. I am getting a second opinion from another MO next week.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2020

    Bcat, I highly recommend getting a second opinion.

  • BCat40
    BCat40 Member Posts: 241
    edited May 2020

    Cowgirl, I managed to get myself a telemed consult for monday with a doctor at another breast center who works with a lot of premenopausal women. Another issue is that the largest cross section of my tumor came back as 50% ER positive, meaning half the cells don't have estrogen receptors. So if cells with no estrogen receptors are floating around hormone therapy is not going to help. My current MO said the hypothesis of the 1.6%-6.5% benefit to women under 50 of CT in the intermediate risk oncotype category is the chemopause effect. So I said, are you saying that if I have cells floating around with no estrogen receptors I'm still not getting a CT benefit and there's no way to kill them? She didn't really have an answer and suggested herself that I get a 2nd opinion.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2020

    BCat, glad to hear that you will be getting a second opinion. I found my oncologist through getting a second opinion--the first oncologist was very highly rated but I wasn't really at ease with her. Loved my oncologist and still see him once a year. Keep us posted.

  • KathyL624
    KathyL624 Member Posts: 217
    edited May 2020

    i thought recent studies clarified the value of oncotype. I was diagnosed 4 years ago and my oncologist at Sloane Kettering put a lot of stock in the oncotype results

  • orangeflower
    orangeflower Member Posts: 146
    edited May 2020

    Kathy, do you have a link? My first MO seemed to trust the Oncotype, second one from Sloan did not.

  • orangeflower
    orangeflower Member Posts: 146
    edited May 2020

    Thanks for the link BCat49

  • BCat40
    BCat40 Member Posts: 241
    edited May 2020

    Danee, it is interesting that your MO thinks Oncotype may be understating the risks, because in comparing with some other ladies who had their Oncotypes done a few years ago, they have been lowering the risk numbers for the same scores. Same happened with my mother's--she was node negative, oncotype 13; they told her she had an 8% risk with Tamoxifen alone. Mine was node negative, 20, and mine says 6% risk with AI/TAM alone. My mother got her Oncotype in 2015 and mine was this year.

  • orangeflower
    orangeflower Member Posts: 146
    edited May 2020

    BCat40, it sounds like a crapshoot. I feel like they can really only give us a ballpark figure. They keep learning new things too. I know my recurrence risk is low, but I don’t know really how low.

  • BCat40
    BCat40 Member Posts: 241
    edited May 2020

    I agree, sometimes it feels like they're fumbling in the dark.

  • BCat40
    BCat40 Member Posts: 241
    edited June 2020

    Update, had consult with second MO. She thinks my Oncotype score of 20 w/ a 6% distant recurrence risk w/ AI or TAM translates to a ~12% risk with no treatment. She says the drugs have a ~50% benefit so she is doubling it, but I do think it's a little inflated since she seems to be using the percent benefit of any recurrence rather than just distant recurrence. If you take that the AI/TAM gives a ~35% reduction in distant recurrence risk, I would have a ~9% risk w/ no treatment.

    I asked about the RS-pathology-clinical (RSPC) tool from Genomic Health that would factor my small tumor size etc into the risk score. She said she did not have the tool handy, but that it would most likely bring my score down due to the favorable clinical features. She said it would make me feel better but that she didn't want to use it to discourage me from getting treatment. I thought that was a refreshingly candid statement.

    She thinks that w/ my 20 oncotype score and younger age, it would "not be wrong" for me to have chemo, but that it would probably only give me a 1-3% benefit.

    So my options are:

    1) Have no further treatment, accept my 9-12% distant recurrence risk and move on with my life;

    2) Do just chemo and get a 1-3% percent risk reduction (however I think the incremental benefit is calculated as if I were also doing ET, as it was in the TAILORx study, if not doing ET, the benefit by itself may be a bit higher);

    3) Do just hormone therapy and get a ~3% risk reduction (~6% according to this MO; I think that is inflated);

    4) Do both hormone therapy and chemo, however MO could not say that the risk reduction would be cumulative as opposed to having partially overlapping effects.

    I will not do #4. I am either picking one treatment or doing no further treatment and moving on. Benefit of chemo--would be a 3 month treatment, then I could move on. Downside--highly toxic. Benefit of ET--somewhat less toxic than chemo. Downside of ET--would be for 5-10 years, with no guarantee that I would be able to tolerate any of the drugs for any length of time.

    If I do chemo the window to do it is within 3 months of surgery. So I have the month of June to decide while undergoing rads.

  • orangeflower
    orangeflower Member Posts: 146
    edited June 2020

    Hi BCat40. Are you sure about not doing number four? Some people do well with chemotherapy, and you might also. Same thing with endocrine therapy. With endocrine therapy, if you can’t stand it, you can always stop. There’s no harm in trying it. You have to remember how young you and I are (I’m 42). We have many estrogen-filled years ahead of us. Many years ahead of us in which to get a recurrence. The risk is there for life, and the window of opportunity to reduce that risk is during these first years after the diagnosis. I understand where you’re at right now, feeling resistant to treatment. I felt like that also. You’re going through radiation, I can see why you want all this to end.

    My surgeon told me that Oncotype score cut off for getting out of chemotherapy was 15 for people of our age.

    Where did you find your second medical oncologist? Mine was from Sloan Kettering, it’s a world famous cancer center, and she did say to take the Oncotype score with a grain of salt. What if she’s right in your risk is actually higher than 6%. 😱 Another thought about risk and all these percentages. At our age, we were really unlikely to get cancer in the first place, but here we are. Just something to ponder.

    Another thought about age and risk. The oncologist pointed out to me that the Oncotype report is only looking at nine years. The risk actually extends into the rest of your life, not just 9 years. She described the risk as having a long tail. So your risk of ever getting a breast cancer recurrence is definitely more than 6%.

    There’s no right answer, and we all make our own risk/benefit analysis. I hope that you make the one that’s most comfortable for you, and I’m sorry that you’re going through this experience!


  • BCat40
    BCat40 Member Posts: 241
    edited June 2020

    Hi Danee, the 2nd opinion was from an MO at Weill Cornell, she has her undergrad from Harvard, MD from Duke and MPH from Harvard. My original MO happened to practice at MSK before coming to my current breast center.

    I feel like the incremental benefit of chemo if I decide to do ET anywayis too small for the toxicity. The treatment also has a .5% risk of causing leukemia.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited June 2020

    BCat40, I can see your diagnose is ILC, same as mine. I was told that chemo doesn't work well in our case and OS+AI works better. Also, Oncotype doesn't mean much in ILC as it does in IDC. From your 4 options, what option was the one your MO highly suggested?

  • BCat40
    BCat40 Member Posts: 241
    edited June 2020

    She basically said chemo was up to me and would recommend ten years of lupron plus AI or tamoxifen (or I would do a different SERM Toremifene since I take Wellbutrin). I have heard that about ILC too, but I also heard Megan Cruz at the Cleveland Clinic speak at a recorded event, she is known for treating lobular. She said the idea that chemo doesn't work in ILC is probably an overgeneralization. Also the conventional wisdom is that ILC is highly hormone positive yet the largest cross section of my tumor left at my hospital lab was only 50% ER+ and the sample that was sent to Oncotype is potentially even lower. So I'm not sure how much to buy into the conventional wisdom. I just don't know if I can ever get there to allow them to inject me to shut down my ovaries.

    I am also thinking about having a sample sent out to Mammaprint. That Nature article talking about the LobSig test for ILC mentioned that mammaprint has been validated for node negative ILC.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited June 2020

    I wasn't offered Mammaprint. Even for Oncotype, I was told that the tumor was too small to test it. Scary since I had a small breast tumor with positive nodes. The sneaky ILC!

    How many nodes did you have removed?

  • BCat40
    BCat40 Member Posts: 241
    edited June 2020

    Lilly, I had one node removed, and it was negative, so they didn't take any others. I had a mammogram, ultrasound and MRI prior to surgery so I'm fairly comfortable they had the full picture. That is def sneaky to get into your nodes but have such a small tumor! But one thing I learned since getting cancer, is that being node-negative doesn't count for as much as you'd like because there could still be undetected tumor cells floating around. :(

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited June 2020

    My surgeon took 4 sentinel nodes and one extra that was on the way. The extra one was positive. This makes me worried how ILC has skipped the nodes to nest to an outside node. I asked the question if letrozole will stave/kill the cancer cells or will make the cells not to multiply. One MO said I don't know the second said it does both. I have a feeling doctors don't know for sure how these toxic drugs work and why they work up to 50% of the time, and why cancer cells mutate, etc.

  • MikaMika
    MikaMika Member Posts: 342
    edited June 2020

    Lilly,

    What was in this extra node? Isolated tumor cells or something bigger?

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited June 2020

    I had a node with small metastatic ILC and the other one outside sentinel group of nodes had ITC. ITC are cancer cells that wonder around and can find a place to land so I take them seriously. That's how the show starts, first with ITC. I read and MO agreed that ILC is very sneaky and unfortunately doesn't create lumps that can be caught with MRI, etc. In my case ILC in breast was very small and located towards middle of chest, on the opposite direction one SN node was metastasized and then ITC to another one outside SN group. Makes me nervous on how ILC grows. I was told for ILC ovarian suppression + AI work better than Tamoxifen.

    Mika, what treatments are you taking? Did you have any positive nodes?

  • MikaMika
    MikaMika Member Posts: 342
    edited June 2020

    I had one sentinel node removed with rare ITC. But my surgeon told they never know how those cells appeared in lymph nodes - travel on their own (which is not good) or because of biopsy and surgery, i.e. "passive transportation" (this is better). I had BMX+radiation. Now on Lupron+Arimidex.

  • BCat40
    BCat40 Member Posts: 241
    edited June 2020

    I'm now getting a third opinion next week with an MO at Dana Farber who does research in ILC. Will report back what he has to say about Oncotype.

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