UK Predict? Easily see your chances of recurrence.

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jesnort5
jesnort5 Member Posts: 17
edited December 2019 in Hormonal Therapy - Before, During, and After

Has anyone played around on UK Predict? https://breast.predict.nhs.uk/tool

You enter your info and it shows you your predicted chance of recurrence. Looks like it was developed using data from 5,000 women with breast cancer. Its predictions were then tested on data from another 23,000 women from around the world. What do you think? My doctor mentioned it briefly and I googled it...

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  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2019

    I got 1.4% reduction for hormone therapy 8% risk and 14% for 15 years.

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  • ksusan
    ksusan Member Posts: 4,505
    edited September 2019

    My 15-year risk is 17%, which is about what my surgeon had calculated.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited September 2019

    This tool has been around for a while but it's good to be reminded of the relative value of various treatments (e.g., in my case the hormonal therapy is more important than chemo or Herceptin were). Reminder that the tumor size is in mm, not cm.

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited September 2019

    This is the only tool available to me, as triple negative. Oncotype doesn't work. It's what I used to decide to have chemo, since my MO was ambivalent about it.

    For those who haven't used it, the "results" can be displayed in a variety of ways, with icons or chart or curves, etc. Also note that "surgery" means either mastectomy OR lumpectomy with radiation. There isn't a separate variable for radiation.

    Here are my 10 year results, given my age, hormone receptor status, HER2 status, chemo, tumor size, nodes involved. What it shows is that for patients like me, 14 of them will die from breast cancer even though they had chemo. Six of them will survive because of chemo. So, was chemo worth it? Well, if you look at 20 who would have died from BC and say that 30% them won't because of chemo, to me that makes chemo worth it. That's why I did it.

    I don't know how the doctors calculate the reduced risk, but that's how I look at it. I want to be one of the 6 that didn't die, because I had chemo.

    Thanks for sharing the link for this. It's good to put it out there for people who don't know about it.

    image

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited September 2019

    Also, from the ABOUT page:

    "The tool applies to women who have had surgery for early invasive breast cancer and are deciding which other treatments to have. It is not designed for women who have had neo-adjuvant treatments (chemotherapy given before surgery) or have already been treated for cancer, for women whose breast cancer is in both breasts or has already spread to distant parts of the body at the time it is diagnosed or for women with non-invasive breast cancer, such as as Ductal Carcinoma In Situ or Lobular Carcinoma In Situ. It is also not designed for men with breast cancer.

    The current version of the tool does not include all the treatments that are currently available. We are working to include more in the near future. In the meantime, an appropriate clinician will be able to advise on all the treatment options suitable for a particular patient.

    Predict only asks for certain information about the cancer. The inputs it asks for are the ones that we have enough information about to predict how they affect survival rates. It does not differentiate between the types of surgery (for example, mastectomy or lumpectomy) or ask for lifestyle factors such as smoking or exercise. These will affect survival, but at the moment we can't say by how much."

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  • ErenTo
    ErenTo Member Posts: 343
    edited September 2019

    This is sobering, particularly for higher stages. At 15 years, only 20% would be alive with surgery alone with my stats. And 34 extra women are alive thanks to all the treatments.

    image

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  • Beesie
    Beesie Member Posts: 12,240
    edited September 2019

    There is also CancerMath. I prefer the Treatment Outcome Calculator, and find that showing the results as a pictogram is the clearest way to understand the results.

    When someone here is asking about prognosis, I always look at both PREDICT and CancerMath and compare the results. Usually they are pretty similar.

    Breast Cancer Treatment Outcome Calculator

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  • ksusan
    ksusan Member Posts: 4,505
    edited September 2019

    This one also doesn't differentiate # years of hormonal treatment. I appreciate that it breaks out the chemo categories.

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  • ErenTo
    ErenTo Member Posts: 343
    edited September 2019

    I don't think any of them take into account the number of years of hormone therapy, susan. But hopefully data should start to emerge in a few years.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited September 2019

    CancerMath is uses old data, too: "All calculators have been verified against cancer patients diagnosed between 1987-2007 in the United States Surveillance, Epidemiology and End-Results database. The breast cancer and melanoma calculators have also been validated against a database of ~30,000 breast cancer and ~7,000 melanoma patients seen at Partners Hospitals"

    It's frustrating that there is no calculator for those of us with bilateral invasive BC. I just assume that I can use the larger tumor, but clearly people like me weren't taken into account for the statistics.

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  • LeesaD
    LeesaD Member Posts: 383
    edited September 2019
    Does anyone know what generation is Taxotere/Cytoxan chemo? I never know which one to pick with these when I try and use the calculators? Also I had 2 sentinel nodes with just micromets and 2 positive axillary nodes so I never know whether to put 2 or 4 positive nodes 🤷‍♀️ .
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  • MountainMia
    MountainMia Member Posts: 1,307
    edited September 2019

    LeesaD, yes, there are certainly issues. I think maybe we shouldn't get too hung up on the numbers, anyway. All we can do is ballpark it, and hope that we're on the right side of the odds.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited September 2019

    My tendency is to look at statistical models but I'm a mathematician. I find many of the studies interesting, especially er+ pr- cancers. Hopefully, with big data collection and so many tools we can get more information on various treatment regimes.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2019

    leesa - TCX4 is a second gen regimen according to this info:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4538915/

    I have the same dilemma with a combo of positive nodes - I just run the calculator both ways to see the difference for a best/worst case scenario.

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  • ksusan
    ksusan Member Posts: 4,505
    edited September 2019

    Taxotere/Cytoxan is 3rd gen according to the Predict site:

    The options in this web tool cover generic chemotherapy regimes used most commonly in England:

    • No chemotherapy at all
    • 2nd gen is short for second-generation chemotherapy drug regimes such as FEC (fluorouracil, epirubicin and cyclophosphamide)
    • 3rd gen is short for third-generation chemotherapy drug regimes that contain taxanes such as paclitaxel (Taxol) and docetaxel (Taxotere)
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  • DorothyB
    DorothyB Member Posts: 305
    edited September 2019

    After I realized one looked at size as mm and the other as cm, the two came up with the same benefit of hormone therapy - 6% in 15 years.

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited September 2019

    I wasn't able to use Taxotere and MO opted not to prescribe Taxol for concern that I'd react to it, too. I had dose dense AC x 4. He told me using it dose dense would put its efficacy just behind what the Taxotere and Cytoxan (every 3 weeks) would have been. Will have to hope that is 3rd gen-y enough.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2019

    ksusan - good to know that Predict has that info, particularly since it is part of the criteria for the calculator. I found it difficult to find listings for 3rd gen regimens for taxanes that did not also include Adriamycin.

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  • ksusan
    ksusan Member Posts: 4,505
    edited September 2019

    SpecialK, I did as well.

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  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited September 2019

    Thank you for mentioning it is in mm and not cm that changed things considerably.

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  • BCboard63
    BCboard63 Member Posts: 23
    edited October 2019

    Does anybody know if there is any hospitals/MOs use these predict tools to help early stage patients to decide if hormone therapy necessary?

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  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited October 2019

    My doctor used a predict tool after my surgery. I had radiation and am on hormone therapy, but the radiation was because I had a positive lymph node at diagnosis, and since I am hormone positive, I get hormone therapy. I read a comment on here from years ago about how lucky those of us are that are eligible for hormone therapy are, and I try to remember that when I get discouraged from all the side effects.

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  • BCboard63
    BCboard63 Member Posts: 23
    edited October 2019

    MissouriCatLady- thank you for response. What predict tool your doctor used? American version or UK version?

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  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited October 2019

    I am not 100% certain, but I do believe it was UK version.

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  • BCboard63
    BCboard63 Member Posts: 23
    edited October 2019

    Thank you very much MissouriCatLady

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  • canadaliz
    canadaliz Member Posts: 37
    edited October 2019

    Hi All, I wonder why it doesn't take into account rads. I had the extra boost too which was supposed to decrease my odds by 4%. Cheers, Liz

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2019

    PREDICT and CancerMath assess only the risk of distant recurrence (i.e. metastatic), not local recurrence.

    The risk of mets is the same whether a patient has a mastectomy or a lumpectomy + rads. For those who have a lumpectomy, the addition of rads reduces the risk of a local (in the breast) recurrence but generally does not reduce the risk of a distant recurrence.


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  • BCboard63
    BCboard63 Member Posts: 23
    edited October 2019

    Is there any tool to assess/predict the risk of local recurrence?

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  • Beesie
    Beesie Member Posts: 12,240
    edited October 2019

    Some medical centers have developed models to assess local recurrence risk. Here is one:

    https://www.tuftsmedicalcenter.org/ibtr/

    There is also a Dutch model: https://www.evidencio.com/models/show/562

    I don't know how accurate either of these models are since they don't seem to be used much.

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  • BCboard63
    BCboard63 Member Posts: 23
    edited October 2019

    Beesie,

    Thank you so much for your always in-depth knowledge/info. Really appreciate it!


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